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  • 1. September+OCTOBER 2012 CURE NEWS FROM AIDS 2012 facing up to lipoatrophy POSITIVE Women Making decisions, creating policy, and improving lives
  • 2. ABOUT PREZISTA ®PREZISTA® (darunavir) is a prescription medicine. It is one treatment option Rifamate,® Rimactane®), sildenafil (Revatio®) when used to treatin the class of HIV (human immunodeficiency virus) medicines known as pulmonary arterial hypertension, indinavir (Crixivan®), lopinavir/protease inhibitors. ritonavir (Kaletra®), saquinavir (Invirase®), boceprevir (Victrelis™),PREZISTA® is always taken with and at the same time as ritonavir (Norvir ®), or telaprevir (Incivek™)in combination with other HIV medicines for the treatment of HIV infection • Before taking PREZISTA, tell your healthcare professional if you are ®in adults. PREZISTA® should also be taken with food. taking sildenafil (Viagra, Revatio®), vardenafil (Levitra,® Staxyn®), ® • The use of other medicines active against HIV in combination with tadalafil (Cialis,® Adcirca®), atorvastatin (Lipitor ®), rosuvastatin PREZISTA®/ritonavir (Norvir ®) may increase your ability to fight HIV. (Crestor ®), pravastatin (Pravachol®), or colchicine (Colcrys,® Your healthcare professional will work with you to find the right Col-Probenecid®). Tell your healthcare professional if you are taking combination of HIV medicines estrogen-based contraceptives (birth control). PREZISTA® might reduce the effectiveness of estrogen-based contraceptives. You must take • It is important that you remain under the care of your healthcare additional precautions for birth control, such as condoms professional during treatment with PREZISTA® This is not a complete list of medicines. Be sure to tell yourPREZISTA® does not cure HIV infection or AIDS and you may healthcare professional about all the medicines you are taking orcontinue to experience illnesses associated with HIV-1 infection, plan to take, including prescription and nonprescription medicines,including opportunistic infections. You should remain under the vitamins, and herbal of a doctor when using PREZISTA. ® What should I tell my doctor before I take PREZISTA®?Please read Important Safety Information below, and talk to yourhealthcare professional to learn if PREZISTA® is right for you. • Before taking PREZISTA, tell your healthcare professional if you have ® any medical conditions, including liver problems (including hepatitis B or C), allergy to sulfa medicines, diabetes, or hemophiliaIMPORTANT SAFETY INFORMATION • Tell your healthcare professional if you are pregnant or planningWhat is the most important information I should know to become pregnant, or are breastfeedingabout PREZISTA®? — The effects of PREZISTA® on pregnant women or their unborn • PREZISTA® can interact with other medicines and cause babies are not known. You and your healthcare professional will serious side effects. See “Who should not take PREZISTA®?” need to decide if taking PREZISTA® is right for you • PREZISTA® may cause liver problems. Some people taking — Do not breastfeed. It is not known if PREZISTA® can be passed PREZISTA, together with Norvir ® (ritonavir), have developed liver ® to your baby in your breast milk and whether it could harm your problems which may be life-threatening. Your healthcare professional baby. Also, mothers with HIV should not breastfeed because HIV should do blood tests before and during your combination treatment can be passed to your baby in the breast milk with PREZISTA. If you have chronic hepatitis B or C infection, your ® healthcare professional should check your blood tests more often What are the possible side effects of PREZISTA®? because you have an increased chance of developing liver problems • High blood sugar, diabetes or worsening of diabetes, and increased • Tell your healthcare professional if you have any of these signs and bleeding in people with hemophilia have been reported in patients symptoms of liver problems: dark (tea-colored) urine, yellowing taking protease inhibitor medicines, including PREZISTA® of your skin or whites of your eyes, pale-colored stools (bowel • Changes in body fat have been seen in some patients taking HIV movements), nausea, vomiting, pain or tenderness on your right medicines, including PREZISTA. The cause and long-term health ® side below your ribs, or loss of appetite effects of these conditions are not known at this time • PREZISTA® may cause a severe or life-threatening skin • Changes in your immune system can happen when you start taking reaction or rash. Sometimes these skin reactions and skin rashes HIV medicines. Your immune system may get stronger and begin can become severe and require treatment in a hospital. You should to fight infections that have been hidden call your healthcare professional immediately if you develop a rash. However, stop taking PREZISTA® and ritonavir combination treatment • The most common side effects related to taking PREZISTA® include and call your healthcare professional immediately if you develop any diarrhea, nausea, rash, headache, stomach pain, and vomiting. This is skin changes with these symptoms: fever, tiredness, muscle or joint not a complete list of all possible side effects. If you experience these pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed or other side effects, talk to your healthcare professional. Do not stop eyes, like “pink eye.” Rash occurred more often in patients taking taking PREZISTA® or any other medicines without first talking to your PREZISTA® and raltegravir together than with either drug separately, healthcare professional but was generally mild You are encouraged to report negative side effects ofWho should not take PREZISTA®? prescription drugs to the FDA. Visit, or call 1-800-FDA-1088. • Do not take PREZISTA® if you are taking the following 28PRZDTC0288R8 medicines: alfuzosin (Uroxatral®), dihydroergotamine (D.H.E.45, ® Please refer to the ritonavir (Norvir ®) Product Information (PI and PPI) Embolex, Migranal ), ergonovine, ergotamine (Cafergot, Ergomar ®), ® ® ® for additional information on precautionary measures. methylergonovine, cisapride (Propulsid®), pimozide (Orap®), oral Please read accompanying Patient Information for PREZISTA® midazolam, triazolam (Halcion®), the herbal supplement St. John’s wort and discuss any questions you have with your doctor. (Hypericum perforatum), lovastatin (Mevacor,® Altoprev,® Advicor ®), simvastatin (Zocor,® Simcor,® Vytorin®), rifampin (Rifadin,® Rifater,®
  • 3. IS THE PREZISTA ® EXPERIENCE RIGHT FOR YOU? There is no other person in the world who is exactly like you. And no HIV treatments are exactly alike, either. That’s why you should ask your healthcare professional about PREZISTA® (darunavir). Once-Daily PREZISTA® taken with ritonavir and in combination with other HIV medications can help lower your viral load and keep your HIV under control over the long term. In a clinical study* of almost 4 years (192 weeks), 7 out of 10 adults who had never taken HIV medications before maintained undetectable† viral loads with PREZISTA® plus ritonavir and Truvada.® Find out if the PREZISTA® EXPERIENCE is right for you. Ask your healthcare professional and learn more at Please read the Important Safety Information and Patient Information on adjacent pages. Snap a quick pic of our logo to show your doctor and get the conversation started. *A randomized open label Phase 3 trial comparing PREZISTA®/ritonavir 800/100 mg once daily (n=343) vs. Kaletra®/ritonavir 800/200 mg/day (n=346). †Undetectable was defined as a viral load of less than 50 copies per mL. Registered trademarks are the property of their respective owners. Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2012 06/12 28PRZ12036G
  • 4. IMPORTANT PATIENT INFORMATION PREZISTA (pre-ZIS-ta) • o not have any kind of sex without protection. Always practice D (darunavir) safe sex by using a latex or polyurethane condom to lower the Oral Suspension chance of sexual contact with semen, vaginal secretions, or blood. PREZISTA (pre-ZIS-ta) Ask your healthcare provider if you have any questions on how to (darunavir) prevent passing HIV to other people. Tablets Who should not take PREZISTA?Read this Patient Information before you start taking PREZISTA and Do not take PREZISTA with any of the following medicines:each time you get a refill. There may be new information. This • lfuzosin (Uroxatral®) ainformation does not take the place of talking to your healthcare • ihydroergotamine (D.H.E. 45®, Embolex®, Migranal®), ergonovine, dprovider about your medical condition or your treatment. ergotamine (Cafergot®, Ergomar®) methylergonovineAlso read the Patient Information leaflet for NORVIR® (ritonavir). • isapride cWhat is the most important information I should • imozide (Orap®) pknow about PREZISTA? • ral midazolam, triazolam (Halcion®) o• REZISTA can interact with other medicines and cause serious P • he herbal supplement St. John’s Wort (Hypericum perforatum) t side effects. It is important to know the medicines that should not be • he cholesterol lowering medicines lovastatin (Mevacor®, Altoprev®, t taken with PREZISTA. See the section “Who should not take Advicor®) or simvastatin (Zocor®, Simcor®, Vytorin®) PREZISTA?” • ifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) r• REZISTA may cause liver problems. Some people taking PREZISTA P • ildenafil (Revatio®) only when used for the treatment of pulmonary s in combination with NORVIR® (ritonavir) have developed liver arterial hypertension. problems which may be life-threatening. Your healthcare provider Serious problems can happen if you take any of these medicines with should do blood tests before and during your combination treatment PREZISTA. with PREZISTA. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often What should I tell my doctor before I take PREZISTA? because you have an increased chance of developing liver problems. PREZISTA may not be right for you. Before taking PREZISTA, tell your• ell your healthcare provider if you have any of the below signs and T healthcare provider if you: symptoms of liver problems. • ave liver problems, including hepatitis B or hepatitis C h • ark (tea colored) urine D • re allergic to sulfa medicines a • ellowing of your skin or whites of your eyes y • ave high blood sugar (diabetes) h • ale colored stools (bowel movements) p • ave hemophilia h • ausea n • re pregnant or planning to become pregnant. It is not known if a • omiting v PREZISTA will harm your unborn baby. • ain or tenderness on your right side below your ribs p Pregnancy Registry: You and your healthcare provider will need to • oss of appetite l decide if taking PREZISTA is right for you. If you take PREZISTA while you are pregnant, talk to your healthcare provider about howPREZISTA may cause severe or life-threatening skin reactions or rash. you can be included in the Antiretroviral Pregnancy Registry. TheSometimes these skin reactions and skin rashes can become severe purpose of the registry is follow the health of you and your baby.and require treatment in a hospital. You should call your healthcare • re breastfeeding or plan to breastfeed. Do not breastfeed. We do aprovider immediately if you develop a rash. However, stop taking not know if PREZISTA can be passed to your baby in your breastPREZISTA and ritonavir combination treatment and call your healthcare milk and whether it could harm your baby. Also, mothers with HIV-1provider immediately if you develop any skin changes with symptoms should not breastfeed because HIV-1 can be passed to the baby inbelow: the breast milk.• fever Tell your healthcare provider about all the medicines you take including• iredness t prescription and nonprescription medicines, vitamins, and herbal• uscle or joint pain m supplements. Using PREZISTA and certain other medicines may affect• listers or skin lesions b each other causing serious side effects. PREZISTA may affect the way• mouth sores or ulcers other medicines work and other medicines may affect how PREZISTA• ed or inflamed eyes, like “pink eye” (conjunctivitis) r works.Rash occurred more often in patients taking PREZISTA and raltegravir Especially tell your healthcare provider if you take:together than with either drug separately, but was generally mild. • edicine to treat HIV mSee “What are the possible side effects of PREZISTA?” for more • strogen-based contraceptives (birth control). PREZISTA might einformation about side effects. reduce the effectiveness of estrogen-based contraceptives. YouWhat is PREZISTA? must take additional precautions for birth control such as a condom.PREZISTA is a prescription anti-HIV medicine used with ritonavir and • edicine for your heart such as bepridil, lidocaine (Xylocaine mother anti-HIV medicines to treat adults with human immunodeficiency Viscous®), quinidine (Nuedexta®), amiodarone (Pacerone®,virus (HIV-1) infection. PREZISTA is a type of anti-HIV medicine called a Cardarone®), digoxin (Lanoxin ®), flecainide (Tambocor ®),protease inhibitor. HIV is the virus that causes AIDS (Acquired Immune propafenone (Rythmol®)Deficiency Syndrome). • arfarin (Coumadin®, Jantoven®) w • edicine for seizures such as carbamazepine (Carbatrol®, Equetro®, mWhen used with other HIV medicines, PREZISTA may help to reduce Tegretol®, Epitol®), phenobarbital, phenytoin (Dilantin®, Phenytek®)the amount of HIV in your blood (called “viral load”). PREZISTA may also help to increase the number of white blood cells called CD4 (T) cell • edicine for depression such as trazadone and desipramine mwhich help fight off other infections. Reducing the amount of HIV and (Norpramin®)increasing the CD4 (T) cell count may improve your immune system. • larithromycin (Prevpac®, Biaxin®) cThis may reduce your risk of death or infections that can happen when • edicine for fungal infections such as ketoconazole (Nizoral®), myour immune system is weak (opportunistic infections). itraconazole (Sporanox®, Onmel®), voriconazole (VFend®)PREZISTA does not cure HIV infection or AIDS and you may continue to • olchicine (Colcrys®, Col-Probenecid®) cexperience illnesses associated with HIV-1 infection, including • ifabutin (Mycobutin®) ropportunistic infections. You should remain under the care of a doctor • edicine used to treat blood pressure, a heart attack, heart failure, mwhen using PREZISTA. or to lower pressure in the eye such as metoprolol (Lopressor®, Toprol-XL®), timolol (Cosopt®, Betimol®, Timoptic®, Isatolol®,Avoid doing things that can spread HIV-1 infection. Combigan®)• Do not share needles or other injection equipment. • idazolam administered by injection m• o not share personal items that can have blood or body fluids on D • edicine for heart disease such as felodipine (Plendil®), nifedipine m them, like toothbrushes and razor blades. (Procardia®, Adalat CC®, Afeditab CR®), nicardipine (Cardene®)
  • 5. IMPORTANT PATIENT INFORMATION• teroids such as dexamethasone, fluticasone (Advair Diskus®, s • Changes in your immune system (Immune Reconstitution Syndrome) Veramyst®, Flovent®, Flonase®) can happen when you start taking HIV medicines. Your immune• bosentan (Tracleer®) system may get stronger and begin to fight infections that have been• medicine to treat chronic hepatitis C such as boceprevir hidden in your body for a long time. Call your healthcare provider (VictrelisTM), telaprevir (IncivekTM) right away if you start having new symptoms after starting your HIV• medicine for cholesterol such as pravastatin (Pravachol®), medicine. atorvastatin (Lipitor®), rosuvastatin (Crestor®) • ncreased bleeding for hemophiliacs. Some people with hemophilia I• edicine to prevent organ transplant failure such as cyclosporine m have increased bleeding with protease inhibitors including (Gengraf®, Sandimmune®, Neoral®), tacrolimus (Prograf®), sirolimus PREZISTA. (Rapamune®) The most common side effects of PREZISTA include:• almeterol (Advair®, Serevent®) s • diarrhea • headache• medicine for narcotic withdrawal such as methadone (Methadose®, • nausea • abdominal pain Dolophine Hydrochloride), buprenorphine (Butrans®, Buprenex®, Subutex®), buprenorphine/naloxone (Suboxone®) • rash • vomiting• edicine to treat schizophrenia such as risperidone (Risperdal®), m Tell your healthcare provider if you have any side effect that bothers thioridazine you or that does not go away.• edicine to treat erectile dysfunction or pulmonary hypertension m These are not all of the possible side effects of PREZISTA. For more such as sildenafil (Viagra®, Revatio®), vardenafil (Levitra®, Staxyn®), information, ask your health care provider. tadalafil (Cialis®, Adcirca®) Call your doctor for medical advice about side effects. You may report• edicine to treat anxiety, depression or panic disorder such as m side effects to the FDA at 1-800-FDA-1088. sertraline (Zoloft®), paroxetine (Paxil®) How should I store PREZISTA?This is not a complete list of medicines that you should tell your • tore PREZISTA oral suspension and tablets at room temperature Shealthcare provider that you are taking. Ask your healthcare provider [77°F (25°C)].or pharmacist if you are not sure if your medicine is one that is listedabove. Know the medicines you take. Keep a list of them to show your • Do not refrigerate or freeze PREZISTA oral or pharmacist when you get a new medicine. Do not start any • Keep PREZISTA away from high medicines while you are taking PREZISTA without first talking with • REZISTA oral suspension should be stored in the original container. Pyour healthcare provider. Keep PREZISTA and all medicines out of the reach of children.How should I take PREZISTA? General information about PREZISTA• ake PREZISTA every day exactly as prescribed by your healthcare T provider. Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZISTA for a • ou must take ritonavir (NORVIR®) at the same time as PREZISTA. Y condition for which it was not prescribed. Do not give PREZISTA to • o not change your dose of PREZISTA or stop treatment without D other people even if they have the same condition you have. It may talking to your healthcare provider first. harm them.• Take PREZISTA and ritonavir (NORVIR®) with food. This leaflet summarizes the most important information about• wallow PREZISTA tablets whole with a drink. If you have difficulty S PREZISTA. If you would like more information, talk to your healthcare swallowing PREZISTA tablets, PREZISTA oral suspension is also provider. You can ask your healthcare provider or pharmacist for available. Your health care provider will help determine whether PREZISTA tablets or oral suspension is right for you. information about PREZISTA that is written for health professionals.• REZISTA oral suspension should be given with the supplied oral P For more information, call 1-800-526-7736. dosing syringe. Shake the suspension well before each usage. What are the ingredients in PREZISTA?• f you take too much PREZISTA, call your healthcare provider or go I Active ingredient: darunavir to the nearest hospital emergency room right away. Inactive ingredients:What should I do if I miss a dose? PREZISTA Oral Suspension: hydroxypropyl cellulose, microcrystallinePeople who take PREZISTA one time a day: cellulose, sodium carboxymethylcellulose, methylparaben sodium, citric• f you miss a dose of PREZISTA by less than 12 hours, take your I acid monohydrate, sucralose, masking flavor, strawberry cream flavor, missed dose of PREZISTA right away. Then take your next dose of hydrochloric acid (for pH adjustment), purified water. PREZISTA at your regularly scheduled time. PREZISTA 75 mg and 150 mg Tablets: colloidal silicon dioxide,• f you miss a dose of PREZISTA by more than 12 hours, wait and then I crospovidone, magnesium stearate, microcrystalline cellulose. The film take the next dose of PREZISTA at your regularly scheduled time. coating contains: OPADRY® White (polyethylene glycol 3350, polyvinyl People who take PREZISTA two times a day alcohol-partially hydrolyzed, talc, titanium dioxide).• f you miss a dose of PREZISTA by less than 6 hours, take your I PREZISTA 400 mg and 600 mg Tablets: colloidal silicon dioxide, missed dose of PREZISTA right away. Then take your next dose of crospovidone, magnesium stearate, microcrystalline cellulose. The film PREZISTA at your regularly scheduled time. coating contains: OPADRY® Orange (FD&C Yellow No.  6, polyethylene • f you miss a dose of PREZISTA by more than 6 hours, wait and then I glycol 3350, polyvinyl lcohol-partially hydrolyzed, talc, titanium dioxide). a take the next dose of PREZISTA at your regularly scheduled time. This Patient Information has been approved by the U.S Food and Drug If a dose of PREZISTA is skipped, do not double the next dose. Do not Administration.take more or less than your prescribed dose of PREZISTA at any onetime. Manufactured by:What are the possible side effects of PREZISTA? PREZISTA Oral Suspension Janssen Pharmaceutica, N.V.PREZISTA can cause side effects including: Beerse, Belgium• ee “What is the most important information I should know about S PREZISTA?” PREZISTA Tablets• iabetes and high blood sugar (hyperglycemia). Some people who D Janssen Ortho LLC, Gurabo, PR 00778 take protease inhibitors including PREZISTA can get high blood Manufactured for: sugar, develop diabetes, or your diabetes can get worse. Tell your Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ healthcare provider if you notice an increase in thirst or urinate 08560 often while taking PREZISTA. NORVIR® is a registered trademark of its respective owner.• hanges in body fat. These changes can happen in people who take C antiretroviral therapy. The changes may include an increased PREZISTA® is a registered trademark of Janssen Pharmaceuticals amount of fat in the upper back and neck (“buffalo hump”), breast, © Janssen Pharmaceuticals, Inc. 2006 and around the back, chest, and stomach area. Loss of fat from the Revised: June 2012 986588P legs, arms, and face may also happen. The exact cause and long- term health effects of these conditions are not known.
  • 6. 5537 N. Broadway St.Chicago, IL 60640phone: (773) 989–9400fax: (773) 989–9494email: inbox@tpan.comwww.positivelyaware.comeditor-in-Chief Jeff Berryassociate editor Enid Vázquezcopy Editors Sue Saltmarsh, Jason LancasterWeb Master Joshua Thorne EXCLUSIVELY ON www.positivelyaware.comCreative director Rick Guascocontributing writersKeith R. Green, Liz Highleyman,Sal Iacopelli, Laura Jones,Jim Pickett, Matt Sharp Surface vs. substance A website—and app—that encourages truth in Internet datingphotographers Knight, Joshua Thorne Additional conference coverage from AIDS 2012 advisorsDaniel S. Berger, MDGary Bucher, MDMichael Cristofano, PA Follow us We read youJoel Gallant, MD on Facebook and on comment on our articlesSwarup Mehta, PharmD TwitteR (@posaware) at POSITIVELYAWARE.COM © 2012. Positively Aware (ISSN: 1523-2883) is published bi-monthly by Test Positive Aware Networkadvertising inquiries (TPAN), 5537 N. Broadway St, Chicago, IL 60640. TPAN is an Illinois not-for-profit corporation, providingLorraine Hayes information and support to anyone concerned with HIV and AIDS issues. Positively Aware is a registered trademark of TPAN. All rights reserved. Circulation: 100,000. For reprint permission, contact Sue Saltmarsh. issues mailed bulk rate for $30 donation; mailed free to those living with HIV or those unable to contribute. We accept contribution of articles covering medical or personal aspects of HIV/AIDS. We reserve the right to edit ordistribution Manager decline submitted articles. When published, the articles become the property of TPAN and its assigns. You may useBradley P Mazzie your actual name or a pseudonym for publication, but please include your name and phone Although Positively Aware takes great care to ensure the accuracy of all the information that it presents, Positively Aware staff and volunteers, TPAN, or the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein. Opinions expressed in Positively Aware are not necessarily those of staff or TPAN, its supporters and sponsors, or distributing agencies. Information, resources, and advertising in Positively Aware do not constitute endorsement or recommendation of any medical treatment or product. TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIV-informed medical practitioner, preferably a personal physician.POSITIVELY AWARE A model, photographer, or author’s HIV status should not be assumed based on their appearance in PositivelyIS PUBLISHED BY Aware, association with TPAN, or contributions to this journal. Distribution of Positively Aware is supported in part through an unrestricted grant from ViiV Healthcare.4 SEPTE MB E R +O C TO B ER 201 2 P os i t i v e lyAware .com
  • 7. SEP+OCT 2012 VOLUME 24 NUMBER 6 D e pa r t m e n t s 6 In Box 6 Readers’ poll 7 editor’s Note What is a woman? 13 Briefly FDA approves Truvada for HIV prevention. Rapid home HIV test approved. Initial study results find dolutegravir/Epzicom is superior to Atripla. 34 Conference Update News from the XIX International AIDS Conference in Washington, D.C. 44 ask the HIV specialist Safe sex is for seniors, too. 45 WHOLISTIC PICTURE Battle of the sexes? c o v e r F e at u r e s 22 Securing care for HIV-positive women Challenges and solutions for women living with HIV. 26 Black women, society, and HIV An expert talks about the context of infection. 28 ‘Everyone needs a support system’ How one therapist helps HIV-positive women learn to take care of themselves. 30 Nine months to birth day HIV and pregnancy—keeping yourself and your baby healthy. F e at u r e 41 The mirror has two faces A personal account of using facial filler for lipoatrophy. On the cover and this page: Tamara wilson, HIV-Positive since 1999, photographed by chris KnightP osi t i ve S E P T E MB E R+ OC TOB E R 2 01 2 5
  • 8. In Box join the conversation: and @posaware Readers’ poll In the JULY+AUGUST issue, we askedHIV testing in prison? Before you tested HIV-positive, did you think you were at risk?First let me say this is I had no idea that anyonestrictly my opinion in has the same problems as No. I didn’tanswer to your reader’s me. The issue touched me 8% thinkpoll question concern- deeply. about HIV testing in prison. Simply knowing you’re 16% Yes, but II believe it should be there, that I can reach out practicedrequired upon entering to someone for information safer sex.and leaving prison. seems to make everything a 24% Yes, but I Prior to my incarcera- little bit better. I’m not sure thought I was at low risk.tion, I worked at Prevention how to receive future issues,Point Philadelphia (a needle but put me on your mailing Yes, but I 33% didn’t program), the Gay list if at all possible! 19%& Lesbian AIDS Education —Dwayne E.Initiative, and I spoke at various events Floridaabout HIV/AIDS in the prison system. I’vebeen positive for 18 years and for the last Good wishes Your comments:11 years I’ve been trying to get as many Comment on July+August Editor’s Note: “I barebacked all the way after my firstpeople tested as possible. Thank you for the uplifting article, “Wish encounter—I have no one to blame but At present, I have three and a half years HIV Away.” Though easier said than done, I myself and my lack of self-esteem.”left on my sentence. During my incarcera- know that I’ll be able to pick my head up intion, I have been a Peer Educator teaching the morning and continue on with a posi- “After I found out, I wanted to kill myself—a class called Positive Voices behind the tive outlook on the day. I’m not at the stage my partner never told me he had HIV.”Walls (a little plug never hurts!) and an yet where people can know, only becauseadvocate for testing. I’m open about my I’m just two months into this disease, but I “Before I tested positive, I alwaysHIV status, so HIV can have a “face” that know I will get there (fingers crossed). practiced safe sex. But I also rememberdefies the expectations of some of the —Steven feeling like no matter how much of amen in here. via good boy I was, HIV was going to get me.” After taking my class for 16 weeks, Ihave seen men’s attitudes change com- Hidden no more “I practiced safer sex until depressionpletely because they see me living healthy, I have to let you guys know how much and drugs got in my way.”happy, with a loving family, and looking I appreciated the article, “The Hiddenforward to a long life. People,” in your January+February 2012 “I never thought about it. I suspect I So, yes, testing should be mandatory, issue. I would love to have the Muslim was infected in 1986. At that time, therealong with education and good informa- brothers come to Memphis to speak in the wasn’t much information availabletion about prevention. very near future. My southern hat goes off about infection and I had no idea what —Larry to the writer Sue Saltmarsh for the article. behavior was risky and what wasn’t.” White Deer, Pennsylvania And love to Karim Rush, Shadeed Jenkins, and Iman Boyd. “I thought those who caught HIV ledYou’re not the only one Great job, POSITIVELY AWARE! You reckless lives, taking drugs and hav-Finally, I’ve found relief! On May 21st, I guys rock! ing many anonymous partners andread my first ever issue of Positively  —Anthony Hardaway unprotected sex. I was naïve to believeAware—the March+April Drug Guide. via the Internet I would be OK if I limited myself to one casual partner every few months.”Do the write thinG. Positively Aware treats all communications (letters, e-mail,etc.) as letters to the editor unless otherwise instructed. We reserve the right to edit for this issue’s poll question:length, style, or clarity. Unless you tell us not to, we will use your name and city. Who is more stigmatized because of HIV? Positively aware We read you. 5537 N. Broadway St. SHare your comments Chicago, IL 60640 about our articles at cast your vote at POSITIVELYAWARE.COM positivelyaware.com6 SEPTE M B E R +O C TO B ER 201 2 P os i t i v e lyAware .com
  • 9. Editor’s NOTE Jeff Berry @PAeditor What is a woman? I’ve had many teachers in life, including women up of mostly women, HIV-positive There are who have taught me particularly important lessons about educator and activist Linda Scruggs countless said it best by stating she wasn’t examples in courage, strength, resilience, caring, and compassion. going to ask for anything, because our culture of women have been asking to be strong, coura- Cindy, the oldest of my three sisters, realized at an counted in for the last two decades. “Today I stand here geous women early age that it was her job to help look after the other to give you some directions. We’ve decided to stop ask- and their four kids in the Berry clan. My sister Barb became a ing, and maybe you just need the recipe.” many accom- veterinarian, the first doctor in our family. The one who Scruggs called for meaningful involvement of women plishments was closest to me in age, Wendy, became my best friend at every level, from the government to local communities and contribu- growing up. My mother Norma went back to work when and organizations, and also made it clear that women are tions to the I started preschool in the early 1960’s, and continued not just asking for male-run organizations that “tolerate” a world. So why working as a schoolteacher and elementary school prin- women’s program. “We need the support and resources… is it that so cipal until she retired. And my grandmother, Ruby, lived to give us the power to heal our sisters, to change our many women to be 101, and would often recount to us colorful stories men. We are the mothers of the earth.” who are in from her life, such as the one about traveling all day in In her talk, Scruggs also shared part of what she says positions a covered wagon to see the Wright Brothers perform got her to the stage that day. She learned she was HIV- of power breathtaking feats in their amazing flying machines. positive while visiting a perinatal clinic and was 13-weeks and leader- All these women and others demonstrated to me pregnant, and had to decide whether to terminate the ship appear wonderful qualities that I respected and admired, and pregnancy and live five years, or have the baby and pos- threatening sought to emulate and incorporate into my own sense sibly live three. She says she’s glad that day the doctor to so many of values and ideals. There are countless examples in was wrong, and her son, Isaiah, was born free of HIV, who live in our culture of strong, courageous women and their and he just recently turned 21. our male- many accomplishments and contributions to the world. “I could’ve made the decision to have an abortion. dominated So why is it that so many women who are in positions An abortion would not have been the first one I had had, society? of power and leadership appear threatening to so many but I had an experience with God. I had an experience who live in our male-dominated society? that…made me really look and reflect about women. A recurring theme at this year’s International AIDS After all, what is a woman who thinks she’s ugly? What Conference was the role of women in ending the is a woman who feels she has no self-value? What is a epidemic. In her address at the conference opening woman who allows not one, but two men to rape her in plenary, Secretary of State Hillary Clinton talked about silence? What is a woman who allows an uncle to molest the essential role of communities, especially people liv- her and others and still be silent?... What is a woman ing with HIV, in turning the tide on the epidemic. “And it who feels that she’s been broken and voiceless? What is will come as no surprise to you,” Clinton told the packed a woman who’s afraid of understanding herself? What audience, “that I would like to highlight the particular is a woman who spent a lifetime trying to be someone role that women play.” other than herself? Clinton pointed out that in Sub-Saharan Africa “I’ll tell you, that cold November day, that woman women account for 60% of people living with HIV. was me, but it was through the support of this commu- “Women want to protect themselves, and they want nity that I was able to find a voice and a place, thatPHOTO: Chris Knight adequate health care, and we need to answer their call,” I could be just who I say I am. I am a woman.” said Clinton. “Every woman should be able to decide when and whether to have children. This is true if she is Take care of yourself, and each other. HIV-positive or not. Women need and deserve a voice in the decisions that affect their lives.” In a lively morning plenary session by a panel made P osi t i ve S E P T E MB E R+ OC TOB E R 2 01 2 7
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  • 15. BRIEFLY Enid Vázquez FDA approves Truvada for PrEP The Food and Drug Administration (FDA) reduction counseling, consistent and participants who in July approved Truvada as the first correct condom use, regular HIV testing, took Truvada in the medication to help prevent HIV infec- and screening for and treatment of other prescribed once- tion. As expected, the approval came sexually-transmitted infections, stating daily dose. with restrictions. that “Truvada is not a substitute for safer “The Partners Truvada, a combination of tenofovir sex practices.” PrEP trial was conducted (Viread) and emtricitabine (Emtriva), is Truvada now carries a Boxed Warning in 4,758 heterosexual couples, one of the most prescribed medications on its drug label alerting health care where one partner was HIV-infected and for HIV in this country. For HIV preven- professionals and uninfected individuals the other was not (serodiscordant cou- tion, the use of Truvada is called “PrEP,” that Truvada for PrEP must only be used ples),” the press release continued. “The for “pre-exposure prophylaxis.” by people confirmed to be HIV-negative trial evaluated the efficacy and safety of “[We] commend the FDA’s approval of before being prescribed the drug and [both] Truvada and [Viread] tenofovir [Truvada] for the use of [PrEP] to prevent tested at least every three months dur- versus placebo in preventing HIV infection HIV transmission. This approach can ing use to reduce the risk of developing in the uninfected male or female partner. prevent many new infections and could drug resistance. Both the antiviral and the Results showed Truvada reduced the risk dramatically impact HIV transmission PrEP dose is one pill taken once daily. of becoming infected by 75% compared worldwide,” said Kenneth H. Mayer, MD, Truvada maker Gilead Sciences worked with placebo. Medical Research Director and Co-chair with the FDA to create a Risk Evaluation “No new side effects were identified of The Fenway Institute at Fenway Health. and Mitigation Strategy (REMS) for in the clinical trials evaluating Truvada “My colleagues and I are delighted to have Truvada PrEP. The REMS focuses on a pre- for the PrEP indication. The most com- helped to demonstrate the utility of this scriber training and education program mon side effects reported with Truvada promising approach for HIV prevention.” in counseling and managing individuals include diarrhea, nausea, abdominal David Ernesto Munar, President/CEO who are taking or considering Truvada for pain, headache, and weight loss. Serious of the AIDS Foundation of Chicago, said, PrEP. The REMS looks at the elements of adverse events in general, as well as “Our challenge now is to implement PrEP a comprehensive HIV prevention strategy, those specifically related to kidney or as strategically as possible, and to ensure the importance of adhering to the recom- bone toxicity, were uncommon.” the people who need it most, those who mended daily dosing regimen, and the As a condition of approval, Gilead are most at risk for HIV, have access.” serious risks of taking Truvada for PrEP if Sciences is required to collect and “This is an enormous turning point, a already infected with HIV or of becoming analyze samples from individuals who real game changer, in the fight against infected while taking it. become infected with HIV while taking HIV,” said Jim Pickett, AFC’s Director According to the press release, Truvada to see if they’ve developed drug of Prevention Advocacy and Gay Men’s “Truvada’s safety and efficacy for PrEP resistance. The company is also required Health. “The toolbox we have now has were demonstrated in two large, random- to collect data on women who become Truvada as PrEP. We can look forward to ized, double-blind, placebo-controlled pregnant while taking Truvada for PrEP more sex acts being protected, especially clinical trials. The iPrEx trial evaluated and to conduct other research. among individuals who have already Truvada in 2,499 HIV-negative men “Today’s decision is the culmination chosen, for whatever reason, to not use or transgender women who have sex of almost 20 years of research involving condoms consistently.” with men and with evidence of high investigators, academic and medical According to a press release from the risk behavior for HIV infection... Results institutions, funding agencies, and nearlyPhoto: Joshua Thorne FDA, “Truvada is to be used for [PrEP] in showed Truvada was effective in reduc- 20,000 trial participants around the combination with safer sex practices to ing the risk of HIV infection by 42% com- world, and Gilead is proud to have been prevent sexually-acquired HIV infection in pared with placebo in this population. a partner in this effort,” said Norbert adults at high risk.” Efficacy was strongly correlated with Bischofberger, PhD, Executive Vice The FDA said Truvada for PrEP should drug adherence in this trial.” President, Research and Development be used as part of a comprehensive It was also shown in iPrEX that there and Chief Scientific Officer, Gilead HIV prevention plan that includes risk was a 92% reduction of risk for HIV in Sciences. >> P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 13
  • 16. BRIEFLY Enid Vázquez in the greatest expansion of HIV preven- Rapid homeMoises Agosto tion tools than at any other time in the history of this epidemic. Coupled with the HIV test approved reforms included in the Patient Protection and Affordable Care Act, as well as the In June, the Food and Drug National HIV/AIDS Strategy, we are in a Administration (FDA) approved the position for the first time in over three OraQuick In-Home HIV Test, an HIV decades to finally end this epidem- self-test kit that does not require sending ic. Today’s decision is another important a sample to a laboratory for analysis. The step in realizing that goal.” kit, which tests a swab from your mouth, is approved for sale in stores and online Dolutegravir/Epzicom to anyone age 17 and older. (Although HIV is not found in saliva, evidence of superior to Atripla? exposure to the virus—called HIV anti- bodies—is found in the mouth and indi- Shionogi-ViiV Healthcare LLC announced cates infection.) A positive result at home that initial results from its Phase 3 study must then be followed up with a confir- SINGLE (ING114467) show superiority of matory blood test from a laboratory. its investigational HIV medication dolute- The FDA said the test can be falsely >> The following is from a statement gravir plus Epzicom over Atripla, one of negative for reasons that include the from Moises Agosto, Director of the most widely prescribed antiviral med- occurrence of HIV infection within three Treatment Education, Adherence, and ications in the country. At 48 weeks, 88% months before testing. People who Mobilization for the National Minority of study participants on the dolutegravir engage in behaviors that put them at AIDS Council (NMAC): regimen achieved undetectable viral increased risk of getting HIV—including load (less than 50 copies/mL) vs. 81% of having unprotected sex with new part- “While PrEP shows substantial promise as those on Atripla, a statistically significant ners, or injecting illegal drugs—should be a supplement to current HIV prevention difference. The company said the dif- re-tested on a regular basis. They should efforts, it is by no means a panacea and ference was primarily driven by a higher not interpret a negative test to indicate is only effective when used in conjunction rate of discontinuation due to adverse that engaging in high risk behavior is with traditional prevention and risk reduc- events in the Atripla arm. All individuals safe. tion strategies, such as condom usage. in the study were taking antiviral therapy “Anti-retroviral medications, like for the first time, a group that does the Truvada, are extremely powerful drugs best in HIV treatment. There were 414 with the potential for serious side individuals put on dolutegravir and 419 effects. As such, PrEP should only be put on Atripla. Overall, 2% of those on the used by individuals who are highly vul- dolutegravir-based regimen discontinued nerable to HIV infection, including those due to adverse events vs. 10% of those in sero-discordant couples, sex workers, receiving the Atripla regimen. The most and gay men. Its efficacy is also directly common adverse events while on Atripla related to an individual’s adherence to were neurological (reported by 41% of a regimen, and should only be used by Atripla recipients vs. 15% of participants those who can commit to taking it regu- receiving the dolutegravir), while the larly. Finally, use of PrEP by individuals most common drug-related adverse who may already be HIV-positive could events with dolutegravir were in the gas- increase the risk of drug resistance. trointestinal system (reported by 22% of “In recent years, there have been a people on dolutegravir vs. 22% of those number of promising developments in given Atripla). biomedical interventions—from treat- Dolutegravir is an investigational ment as prevention and pre-exposure integrase inhibitor (INSTI), the same class prophylaxis to microbicides and vaccine as Isentress, the only INSTI currently on research. These advances have resulted the market. 14 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 17. E-NEWS | Sign up for the weekly email newsletter of positively aware. go to positivelyaware.comFrom the Weekly E-News is an important step forward in our fight Studies find against the disease.” once-daily ‘Quad’Website offers ViiV Healthcare is the first pharma- ceutical company to support the program is safe and effectiveaccess to HIV meds with HIV/AIDS medications and funding.for uninsured The goal of HarborPath is to get all HIV/AIDS medications into the program The findings of two large international randomized studies published in TheHarborPath, a new non-profit organiza- and serve uninsured individuals with: Lancet medical journal indicate that thetion, has been established to create a new once-daily pill combining threeprogram that offers a single place where n An easy-to-use website with a single antiretrovirals and a booster molecule isuninsured HIV-positive people who portal to determine eligibility for the a safe and effective alternative to twootherwise qualify for manufacturer- program and to fill prescriptions for widely used drug regimens for newlysponsored patient assistance programs participating companies’ HIV/AIDS diagnosed HIV-positive adults who have(PAPs) can apply for and receive their medications. had no previous treatment. The studymedications. The “one stop shop” portal n Automatic notifications for both the results also indicate that the new “Quad”will provide a streamlined, online process individual and the case manager of pill is faster acting, doesn’t have the neu-to qualify individuals and deliver the qualification for the program. ropsychiatric side effects associated withdonated medications through a mail- n A pharmacy that ships a 3-month sup- other combinations, and could improveorder pharmacy. HarborPath will pilot the ply of all participating medications in compliance with treatment.program in states with high need, includ- one package within two business days “Patient adherence to medication ising Alabama, Texas, and Virginia. of final approval and confirms delivery vital, especially for patients with HIV, To create the portal, HarborPath of the medications. where missed doses can quickly lead toworked closely with the National Alliance n Renewal reminders to individuals and the virus becoming resistant to medica-of State and Territorial AIDS Directors case managers to improve medication tion. Older HIV treatment regimens(NASTAD) and the Clinton Health Access adherence. involve taking several pills multiple timesInitiative (CHAI), which provided the seed n A fully automated portal that case a day,” explains Paul Sax from Brighamfunding for the organization. On World managers can access at any time and Women’s Hospital, Harvard MedicalAIDS Day 2011, President Bill Clinton noted for up-to-the-minute status of an School, lead author of the first study.the need to fight HIV/AIDS in the U.S. individual’s application or shipment. If “Our results provide an additional highly “I am proud that my foundation is needed, live support is also available potent, well-tolerated treatment option,partnering with NASTAD and other through a toll-free call center. and highlight the simplicity of treatmentpharmaceutical manufacturers to make resulting from combining several anti-sure Americans living with HIV have Murray Penner, Deputy Executive retrovirals in a single pill. Studies haveaccess to the life-saving medications Director at NASTAD, said, “Under the cur- shown that single pill treatments improvethey need,” said President Clinton. “This rent PAP process, an individual or their both adherence and patient satisfaction, case manager has to apply and help prevent prescription errors, separately to each com- thereby reducing the likelihood of treat- pany’s program for these ment failure and drug resistance.” medications, which can be The first study randomly assigned complex and time-consum- 700 patients from centers across North ing. Missing doses or failing America to start treatment with two to fill prescriptions because different single tablet regimens—either of complications sometimes the Quad, combining the new integrase associated with these pro- inhibitor elvitegravir (EVG) boosted with cesses may result in serious cobicistat (a new pharmacoenhancer; health consequences, or COBI) plus emtricitabine/tenofovir even death, in addition to (Emtriva/Viread), or Atripla (efavirenz/ increased transmission of emtricitabine/tenofovir), the current gold the virus. HarborPath is standard regimen approved by the FDA designed to address this in 2006. urgent need in the U.S.” After 48 weeks of treatment, 88% >>P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 15
  • 18. BRIEFLYEnid Vázquezof patients given the Quad had sup- was reached by 90% of people in the first conference to be held in the U.S.pressed viral loads (less than 50 copies/ Quad group compared with 87% in the since President Obama lifted the travelmL), compared with 84% in the Atripla atazanavir/ritonavir/emtricitabine/teno- ban on HIV-positive people, his anticipa-group. fovir group. tion of such events as displays of the Adverse events that led to patients The safety of the two regimens was AIDS Memorial Quilt, a planned marchdiscontinuing treatment were infrequent also similar. and demonstration, the performanceand similar in both groups. Mild nausea of the Tony Award-winning play Thewas more common with the Quad, butpatients were less likely to have dizziness, PA’s editor debuts Normal Heart, as well as the many global leaders in AIDS policy, advocacy, andabnormal dreams, insomnia, and rash blog on HuffPo treatment advances that presented at thecompared with the Atripla regimen. conference. The second trial included 708 Positively Aware editor Jeff Berry hastreatment-naïve adults from 146 medical joined other AIDS activists and journalistscenters across Australia, Europe, NorthAmerica, and Thailand. Patients were such as The Body’s Kellee Turrell, the AIDS Foundation of Chicago’s David Ernesto Did he get infected?randomly assigned to receive a once-daily Munar, and others in becoming a blogger In the July+August issue of PositivelyQuad or a popular and recommended published by The Huffington Post. Aware, a young man in Chicago, Chris,twice-daily combination of Norvir- In advance of the upcoming AIDS 2012 was anxiously awaiting the results of hisboosted Reyataz (atazanavir/ritonavir) World AIDS Conference, Berry wrote HIV tests following a potential exposureplus Truvada (emtricitabine/tenofovir). “Reflections from an Epidemic: Carrying through sex (“PrEPing,” July+August). The primary endpoint, to achieve viral the Torch to AIDS 2012.” In it, he talks Two months later, he remainslevels below 50 copies/mL by week 48, about the significance of this being the HIV-negative. Simplify your life. Turn your assorted prescription medicine bottles into single-dose packs. Easy to remember. Easy to take. Each pack contains all the pills of a single dose. Free FedEx shipping anywhere in the continental U.S. J Discount Pharmacy Call to place your first order: (773) 278-533716 SE P TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 19. TPAN, publisher of Positively Aware, is commemorating 25 years of service to Chicago’s HIV community. Join Jamar Rogers, of NBC’s “The Voice,” for a special performance. October 4, 2012 5:30–8:30 PM | Chicago Cultural center Tickets available at Event sponsors ANNIVERSARY PARTNERS $100,000 AND ABOVE $50,000 AND ABOVE Alphawood Foundation Janssen TherapeuticsPhoto: Matthew Garsteck Bristol-Myers Squibb $25,000 AND ABOVE $10,000 AND ABOVE Abbott Virology AIDS Foundation of Chicago EMD Serono Blue Cross and Blue Shield Lloyd A. Fry Foundation of Illinois ViiV Healthcare Cheetah Gyms Walgreens Gilead Sciences, Inc. Macy’s MillerCoors Steamworks
  • 20. COMPLERA (emtricitabine/rilpivirine/tenofovir disoproxil fumarate) is a prescription medicine used as a complete single-tablet regimen to treat HIV-1 in adults who have never taken HIV medicines before. COMPLERA does not cure HIV or AIDS or help prevent passing HIV to others. one The for me Patient model. Pill shown is not actual size.INDICATION Do not take COMPLERA if you are taking the following medicines: • other HIV medicines (COMPLERA provides a complete treatment for HIV infection.)COMPLERA (emtricitabine 200 mg/rilpivirine 25 mg/tenofovir disoproxil fumarate ® • the anti-seizure medicines carbamazepine (Carbatrol®, Equetro®, Tegretol®,300 mg) is a prescription HIV medicine that contains 3 medicines, EMTRIVA® Tegretol-XR®, Teril®, Epitol®), oxcarbazepine (Trileptal®), phenobarbital (Luminal®),(emtricitabine), EDURANT™ (rilpivirine), and VIREAD® (tenofovir disoproxil fumarate) phenytoin (Dilantin®, Dilantin-125®, Phenytek®)combined in one pill. COMPLERA is used as a complete single-tablet regimen to treat • the anti-tuberculosis medicines rifabutin (Mycobutin), rifampin (Rifater®,HIV-1 infection in adults (age 18 and older) who have never taken HIV medicines before. Rifamate®, Rimactane®, Rifadin®) and rifapentine (Priftin®)COMPLERA does not cure HIV and has not been shown to prevent passing HIV • a proton pump inhibitor medicine for certain stomach or intestinal problems,to others. It is important to always practice safer sex, use latex or polyurethane including esomeprazole (Nexium®, Vimovo®), lansoprazole (Prevacid®),condoms to lower the chance of sexual contact with any body fluids, and to never omeprazole (Prilosec®), pantoprazole sodium (Protonix®), rabeprazole (Aciphex®)re-use or share needles. Do not stop taking COMPLERA unless directed by your • more than 1 dose of the steroid medicine dexamethasone or dexamethasonehealthcare provider. See your healthcare provider regularly. sodium phosphate • St. John’s wort (Hypericum perforatum) • other medicines that contain tenofovir (VIREAD®, TRUVADA®, ATRIPLA®)IMPORTANT SAFETY INFORMATION • other medicines that contain emtricitabine or lamivudine (EMTRIVA®, Combivir®,Contact your healthcare provider right away if you get the following side effects Epivir® or Epivir-HBV®, Epzicom®, Trizivir®)or conditions while taking COMPLERA: • rilpivirine (Edurant™)• Nausea, vomiting, unusual muscle pain, and/or weakness. These may be • adefovir (HEPSERA®) signs of a buildup of acid in the blood (lactic acidosis), which is a serious In addition, also tell your healthcare provider if you take: medical condition • an antacid medicine that contains aluminum, magnesium hydroxide, or calcium• Light-colored stools, dark-colored urine, and/or if your skin or the whites of your carbonate. Take antacids at least 2 hours before or at least 4 hours after you eyes turn yellow. These may be signs of serious liver problems (hepatotoxicity), take COMPLERA with liver enlargement (hepatomegaly), and fat in the liver (steatosis) • a histamine-2 blocker medicine, including famotidine (Pepcid®), cimetidine• If you have HIV-1 and hepatitis B virus (HBV), your liver disease may suddenly (Tagamet®), nizatidine (Axid®), or ranitidine hydrochloride (Zantac®). Take these get worse if you stop taking COMPLERA. Do not stop taking COMPLERA without medicines at least 12 hours before or at least 4 hours after you take COMPLERA first talking to your healthcare provider. Your healthcare provider will monitor • the antibiotic medicines clarithromycin (Biaxin®), erythromycin (E-Mycin®, Eryc®, your condition Ery-Tab®, PCE®, Pediazole®, Ilosone®), and troleandomycin (TAO®)COMPLERA may affect the way other medicines work, and other medicines may • an antifungal medicine by mouth, including fluconazole (Diflucan®), itraconazoleaffect how COMPLERA works, and may cause serious side effects. (Sporanox®), ketoconazole (Nizoral®), posaconazole (Noxafil®), voriconazole (Vfend®) • methadone (Dolophine®) This list of medicines is not complete. Discuss with your healthcare provider all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.
  • 21. Save up to You may be able to save on the co-pay for 200 your COMPLERA prescription with a Gilead $ HIV Co-pay Assistance Card. Call 1-877-505-6986 for more information per month or visit* COMPLERA. A complete HIV treatment in only 1 pill a day. Ask your healthcare provider if it’s the one for you.Before taking COMPLERA, tell your healthcare provider if you: Common side effects associated with COMPLERA:• have liver problems, including hepatitis B or C virus infection • trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea,• have kidney problems nausea, rash, tiredness, and depression• have ever had a mental health problem Other side effects associated with COMPLERA:• have bone problems • vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles),• are pregnant or plan to become pregnant. It is not known if COMPLERA can harm and pain your unborn child• are breastfeeding; women with HIV should not breast-feed because they can pass Tell your healthcare provider if you have any side effect that bothers you or that HIV through their milk to the baby does not go away. These are not all the possible side effects of COMPLERA. For more information, ask your healthcare provider or pharmacist. Call your healthcare providerContact your healthcare provider right away if you experience any of the for medical advice about side effects.following serious or common side effects: You are encouraged to report negative side effects of prescription drugs to theSerious side effects associated with COMPLERA:• New or worse kidney problems can happen in some people who take COMPLERA. FDA. Visit or call 1-800-FDA-1088. If you have had kidney problems in the past or take other medicines that can cause Take COMPLERA exactly as your healthcare provider tells you to take it kidney problems, your healthcare provider may need to do blood tests to check your • Always take COMPLERA with a meal. Taking COMPLERA with a meal is important to kidneys during your treatment with COMPLERA help get the right amount of medicine in your body. A protein drink does not replace• Depression or mood changes can happen in some people who take COMPLERA. a meal Tell your healthcare provider right away if you have any of the following symptoms: • Stay under the care of your healthcare provider during treatment with feeling sad or hopeless, feeling anxious or restless, or if you have thoughts of COMPLERA and see your healthcare provider regularly hurting yourself (suicide) or have tried to hurt yourself• Bone problems can happen in some people who take COMPLERA. Bone problems Please see Patient Information for COMPLERA on the following pages. include bone pain, softening or thinning (which may lead to fractures). Your *The co-pay program covers up to $200 per month for 1 year from card activation or until the healthcare provider may need to do additional tests to check your bones card expires, up to $2400 in a calendar year. The program is subject to change or cancellation• Changes in body fat can happen in people taking HIV medicine. These changes at any time. may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long-term health effect of these conditions are not known• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting your HIV medicine Learn more at
  • 22. FDA-Approved Patient Labeling COMPLERA may help:Patient Information • Reduce the amount of HIV in your blood. This is called your “viral load”.COMPLERA® (kom-PLEH-rah) • Increase the number of white blood cells called CD4+ (T) cells that help fight off(emtricitabine, rilpivirine and tenofovir disoproxil fumarate) Tablets other infections.Important: Ask your doctor or pharmacist about medicines that should not be Reducing the amount of HIV and increasing the CD4+ (T) cell count may improve yourtaken with COMPLERA. For more information, see the section “What should I tell my immune system. This may reduce your risk of death or infections that can happen whenhealthcare provider before taking COMPLERA?” your immune system is weak (opportunistic infections). COMPLERA does not cure HIV infections or AIDS.Read this Patient Information before you start taking COMPLERA and each time you • Always practice safer sex.get a refill. There may be new information. This information does not take the place of • Use latex or polyurethane condoms to lower the chance of sexual contact with anytalking to your healthcare provider about your medical condition or treatment. body fluids such as semen, vaginal secretions, or blood. • Never re-use or share needles.What is the most important information I should know about COMPLERA?COMPLERA can cause serious side effects, including: Ask your healthcare provider if you have any questions about how to prevent passing1. Build-up of an acid in your blood (lactic acidosis). Lactic acidosis can happen in HIV to other people.some people who take COMPLERA or similar (nucleoside analogs) medicines. Lactic Who should not take COMPLERA?acidosis is a serious medical emergency that can lead to death. • Do not take COMPLERA if your HIV infection has been previously treated withLactic acidosis can be hard to identify early, because the symptoms could seem like HIV medicines.symptoms of other health problems. Call your healthcare provider right away if you • Do not take COMPLERA if you are taking certain other medicines. For moreget any of the following symptoms which could be signs of lactic acidosis: information about medicines that must not be taken with COMPLERA, see “What• feeling very weak or tired should I tell my healthcare provider before taking COMPLERA?”• have unusual (not normal) muscle pain• have trouble breathing What should I tell my healthcare provider before taking COMPLERA?• have stomach pain with Before you take COMPLERA, tell your healthcare provider if you: - nausea (feel sick to your stomach) • have liver problems, including hepatitis B or C virus infection - vomiting • have kidney problems• feel cold, especially in your arms and legs • have ever had a mental health problem• feel dizzy or lightheaded • have bone problems• have a fast or irregular heartbeat • are pregnant or plan to become pregnant. It is not known if COMPLERA can harm2. Severe liver problems. Severe liver problems can happen in people who take your unborn childCOMPLERA or similar medicines. In some cases these liver problems can lead to death. Pregnancy Registry. There is a pregnancy registry for women who take antiviralYour liver may become large (hepatomegaly) and you may develop fat in your liver medicines during pregnancy. Its purpose is to collect information about the health(steatosis) when you take COMPLERA. of you and your baby. Talk to your healthcare provider about how you can take part in this registry.Call your healthcare provider right away if you have any of the following symptoms • are breast-feeding or plan to breast-feed. The Centers for Disease Control andof liver problems:• your skin or the white part of your eyes turns yellow (jaundice). Prevention recommends that mothers with HIV not breastfeed because they can pass• dark “tea-colored” urine the HIV through their milk to the baby. It is not known if COMPLERA can pass through• light-colored bowel movements (stools) your breast milk and harm your baby. Talk to your healthcare provider about the best• loss of appetite for several days or longer way to feed your baby.• nausea Tell your healthcare provider about all the medicines you take, including prescription• stomach pain and nonprescription medicines, vitamins, and herbal supplements.You may be more likely to get lactic acidosis or severe liver problems if you are COMPLERA may affect the way other medicines work, and other medicines mayfemale, very overweight (obese), or have been taking COMPLERA or a similar affect how COMPLERA works, and may cause serious side effects. If you take certainmedicine containing nucleoside analogs for a long time. medicines with COMPLERA, the amount of COMPLERA in your body may be too low and it may not work to help control your HIV infection. The HIV virus in your body may become3. Worsening of Hepatitis B infection. If you also have hepatitis B virus (HBV) infection resistant to COMPLERA or other HIV medicines that are like it.and you stop taking COMPLERA, your HBV infection may become worse (flare-up). A“flare-up” is when your HBV infection suddenly returns in a worse way than before. Do not take COMPLERA if you also take these medicines:COMPLERA is not approved for the treatment of HBV, so you must discuss your HBV • COMPLERA provides a complete treatment for HIV infection. Do not take other HIVtherapy with your healthcare provider. medicines with COMPLERA.• Do not let your COMPLERA run out. Refill your prescription or talk to your healthcare • the anti-seizure medicines carbamazepine (CARBATROL®, EQUETRO®, TEGRETOL®, provider before your COMPLERA is all gone. TEGRETOL-XR®, TERIL®, EPITOL®), oxcarbazepine (TRILEPTAL®), phenobarbital• Do not stop taking COMPLERA without first talking to your healthcare provider. (LUMINAL®), phenytoin (DILANTIN®, DILANTIN-125®, PHENYTEK®)• If you stop taking COMPLERA, your healthcare provider will need to check your health • the anti-tuberculosis medicines rifabutin (MYCOBUTIN ), rifampin (RIFATER , ® ® often and do regular blood tests to check your HBV infection. Tell your healthcare RIFAMATE®, RIMACTANE®, RIFADIN®) and rifapentine (PRIFTIN®) provider about any new or unusual symptoms you may have after you stop taking • a proton pump inhibitor medicine for certain stomach or intestinal problems, COMPLERA. including esomeprazole (NEXIUM®, VIMOVO®), lansoprazole (PREVACID®), omeprazole (PRILOSEC®), pantoprazole sodium (PROTONIX®), rabeprazole (ACIPHEX®)What is COMPLERA? • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodiumCOMPLERA is a prescription HIV (Human Immunodeficiency Virus) medicine that: phosphate• is used to treat HIV-1 in adults who have never taken HIV medicines before. HIV is the • St. John’s wort (Hypericum perforatum) virus that causes AIDS (Acquired Immunodeficiency Syndrome). If you are taking COMPLERA, you should not take:• contains 3 medicines, (rilpivirine, emtricitabine, tenofovir disoproxil fumarate) • other medicines that contain tenofovir (VIREAD®, TRUVADA®, ATRIPLA®) combined in one tablet. EMTRIVA and VIREAD are HIV-1 (human immunodeficiency • other medicines that contain emtricitabine or lamivudine (EMTRIVA®, COMBIVIR®, virus) nucleoside analog reverse transcriptase inhibitors (NRTIs) and EDURANT is an EPIVIR® or EPIVIR-HBV®, EPZICOM®, TRIZIVIR®) HIV-1 non-nucleoside analog reverse transcriptase inhibitor (NNRTI). • rilpivirine (EDURANT™)It is not known if COMPLERA is safe and effective in children under the age of 18 years. • adefovir (HEPSERA®)
  • 23. Also tell your healthcare provider if you take: The most common side effects of COMPLERA include:• an antacid medicine that contains aluminum, magnesium hydroxide, or calcium • trouble sleeping (insomnia) carbonate. Take antacids at least 2 hours before or at least 4 hours after you take • abnormal dreams COMPLERA. • headache• a histamine-2 blocker medicine, including famotidine (PEPCID®), cimetidine • dizziness (TAGAMET®), nizatidine (AXID®), or ranitidine hydrochloride (ZANTAC®). Take these • diarrhea medicines at least 12 hours before or at least 4 hours after you take COMPLERA. • nausea• the antibiotic medicines clarithromycin (BIAXIN®), erythromycin (E-MYCIN®, ERYC®, • rash ERY-TAB®, PCE®, PEDIAZOLE®, ILOSONE®), and troleandomycin (TAO®) • tiredness• an antifungal medicine by mouth, including fluconazole (DIFLUCAN®), itraconazole (SPORANOX®), ketoconazole (NIZORAL®), posaconazole (NOXAFIL®), voriconazole • depression (VFEND®) Additional common side effects include:• methadone (DOLOPHINE®) • vomitingAsk your healthcare provider or pharmacist if you are not sure if your medicine is • stomach pain or discomfortone that is listed above. • skin discoloration (small spots or freckles)Know the medicines you take. Keep a list of your medicines and show it to your • painhealthcare provider and pharmacist when you get a new medicine. Your healthcare Tell your healthcare provider if you have any side effect that bothers you or that doesprovider and your pharmacist can tell you if you can take these medicines with not go away.COMPLERA. Do not start any new medicines while you are taking COMPLERA withoutfirst talking with your healthcare provider or pharmacist. You can ask your healthcare These are not all the possible side effects of COMPLERA. For more information, ask yourprovider or pharmacist for a list of medicines that can interact with COMPLERA. healthcare provider or pharmacist. Call your doctor for medical advice about side effects. You may report side effects toHow should I take COMPLERA?• Stay under the care of your healthcare provider during treatment with COMPLERA. FDA at 1-800-FDA-1088 (1-800-332-1088).• Take COMPLERA exactly as your healthcare provider tells you to take it. How do I store COMPLERA?• Always take COMPLERA with a meal. Taking COMPLERA with a meal is important • Store COMPLERA at room temperature 77 °F (25 °C). to help get the right amount of medicine in your body. A protein drink does not • Keep COMPLERA in its original container and keep the container tightly closed. replace a meal. • Do not use COMPLERA if the seal over the bottle opening is broken or missing.• Do not change your dose or stop taking COMPLERA without first talking with your healthcare provider. See your healthcare provider regularly while taking COMPLERA. Keep COMPLERA and all other medicines out of reach of children.• If you miss a dose of COMPLERA within 12 hours of the time you usually take it, take your dose of COMPLERA with a meal as soon as possible. Then, take your next dose General information about COMPLERA: of COMPLERA at the regularly scheduled time. If you miss a dose of COMPLERA by Medicines are sometimes prescribed for purposes other than those listed in a Patient more than 12 hours of the time you usually take it, wait and then take the next dose Information leaflet. Do not use COMPLERA for a condition for which it was not prescribed. of COMPLERA at the regularly scheduled time. Do not give COMPLERA to other people, even if they have the same symptoms you have.• Do not take more than your prescribed dose to make up for a missed dose. It may harm them.• When your COMPLERA supply starts to run low, get more from your healthcare provider or pharmacy. It is very important not to run out of COMPLERA. The amount of virus in This leaflet summarizes the most important information about COMPLERA. If you your blood may increase if the medicine is stopped for even a short time. would like more information, talk with your healthcare provider. You can ask your• If you take too much COMPLERA, contact your local poison control center or go to the healthcare provider or pharmacist for information about COMPLERA that is written nearest hospital emergency room right away. for health professionals. For more information, call (1-800-445-3235) or go to are the possible side effects of COMPLERA?COMPLERA may cause the following serious side effects, including: What are the ingredients of COMPLERA?• See “What is the most important information I should know about COMPLERA?” Active ingredients: emtricitabine, rilpivirine hydrochloride, and tenofovir disoproxil• New or worse kidney problems can happen in some people who take COMPLERA. fumarate If you have had kidney problems in the past or take other medicines that can cause Inactive ingredients: pregelatinized starch, lactose monohydrate, microcrystalline kidney problems, your healthcare provider may need to do blood tests to check your kidneys during your treatment with COMPLERA. cellulose, croscarmellose sodium, magnesium stearate, povidone, polysorbate 20. The• Depression or mood changes. Tell your healthcare provider right away if you have tablet film coating contains polyethylene glycol, hypromellose, lactose monohydrate, any of the following symptoms: triacetin, titanium dioxide, iron oxide red, FD&C Blue #2 aluminum lake, FD&C Yellow - feeling sad or hopeless #6 aluminum lake. - feeling anxious or restless - have thoughts of hurting yourself (suicide) or have tried to hurt yourself This Patient Information has been approved by the U.S. Food and Drug Administration• Bone problems can happen in some people who take COMPLERA. Bone problems Manufactured and distributed by: include bone pain, softening or thinning (which may lead to fractures). Your Gilead Sciences, Inc. healthcare provider may need to do additional tests to check your bones. Foster City, CA 94404• Changes in body fat can happen in people taking HIV medicine. These changes may include increased amount of fat in the upper back and neck (“buffalo hump”), breast, Issued: August 2011 and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long term health effect of these conditions are COMPLERA, the COMPLERA Logo, EMTRIVA, HEPSERA, TRUVADA, VIREAD, GILEAD, and not known. the GILEAD Logo are trademarks of Gilead Sciences, Inc. or its related companies.• Changes in your immune system (Immune Reconstitution Syndrome) can happen ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other when you start taking HIV medicines. Your immune system may get stronger trademarks referenced herein are the property of their respective owners. and begin to fight infections that have been hidden in your body for a long time. © 2012 Gilead Sciences, Inc. All rights reserved. Tell your healthcare provider if you start having new symptoms after starting your HIV medicine. 202123-GS-000 02AUG2011 CON12383 3/12
  • 24. Securing carefor Womenliving with HIVChallenges and solutions for HIV-positive womenby Naina KhannaF ive years ago, women had the dubious distinction of surpassing men as the majority of people in the world living with HIV. And in some countries, including Cambodia, Mozambique, and Rwanda, womennow comprise nearly two-thirds of people living with the virus. In the U.S., the HIV epidemic looks people living with HIV. That is, these socio- Photo: © IAS/Steve Shapiro-Commercialimage.netvery different. Women comprise over a economic factors increase vulnerability toquarter of the estimated 1.2 million people poor health outcomes, with or without anliving with HIV in the U.S.—not including HIV diagnosis. U.S. women living with HIVtransgender women, for whom no accu- are disproportionately likely to be womenrate data are available. In 1984, women of color (over 80%), especially black andrepresented only 8% of HIV infections in Latina, and living in poverty, comparedthe U.S. Thus, even at a national level, the to men living with HIV. According to thetrend is troubling. Data from 2012 show HIV Cost Services and Utilization Studythat in the District of Columbia, rates of (HCSUS), 64% of HIV-positive women innew HIV diagnosis among black women ongoing medical care had annual incomeshave doubled. In Maryland, 35% of all AIDS under $10,000, compared with 41% ofdiagnoses are among women, and in the HIV-positive men in care. More than twiceU.S. Virgin Islands, 36.4% of people with as many HIV-positive women (76%) asan AIDS diagnosis were women in 2009. HIV-positive men (34%) are living with andAnd when you drill down further, particu- caring for at least one child under the agelarly in the U.S. South, in some counties, of 18. Thus, care systems for HIV-positiveHIV infection rates among females may women must account for caretaking Organizing Principal: Megaphone in hand,be even higher. Let’s be clear: this is not a responsibilities, including provisions fornumbers game anyone wants to win. minor children. it’s a matter of practicality—we only have Of even more concern, in the United Alarmingly, data show that adher- so many dollars to go around and hoursStates, HIV acquisition among women ence to anti-retroviral therapy tends to in the day and bus vouchers. Sometimesis correlated with race, poverty, experi- decrease among women living with HIV it’s a matter of stigma—we don’t wantence of trauma, mental illness, substance as the number of children under 18 living others to see us taking our meds or goinguse, and vulnerability to assorted social in the home increases. This is no real sur- to medical appointments. And frequentlystigmas—the same factors that reduce prise. As women, we tend to prioritize car- it’s a reflection of how we value ourselves,likelihood of positive health outcomes in ing for others over ourselves. Sometimes especially as poor women, women of22 SE P TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 25. Naina Khanna, Director of Policy and Community Organizing, WORLD, rallies demonstrators at the International AIDS Conference in July. color, women living with HIV. We have employment, and access to quality health Although researchers within the U.S. internalized that our health, our wellness, care, and, if HIV-positive, are less likely and internationally have known for years our wellbeing is too often not a priority for than other populations to receive antiret- that women who have experienced vio- our society and political leaders—so why roviral therapy and more likely to experi- lence and trauma are at elevated risk of should we make it a priority for us? ence negative interactions with health care acquiring HIV (even in non-conflict set- Transgender women are especially providers. Transgender women are also tings), new data released in 2012 show likely to live in extreme poverty, to face disproportionately likely to face violence in that women with HIV in the U.S. are exceptional barriers to safe housing, their communities. twice as likely to have been victims of P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 23
  • 26. Women’s bodies are not only about making babies. Fully upholding our human rights includes upholding our right to be sexual beings who experience joy and erotic pleasure.intimate partner violence and suffer post- already concentrated, or saturated, with collected by the U.S. Positive Women’straumatic stress disorder at a rate five a set of representations and assumptions Network suggest that HIV criminalizationtimes greater than HIV-negative women. about those positions.” Thus, HIV becomes laws, currently on the books in 36 statesRates of violence faced by transgender just another one of several stigmatizing and U.S. territories, may deter womenwomen are likely to be even higher—data social markers. Yet having a socially valued from HIV testing, from accessing care, andreleased in 2011 by the National Coalition identity may impact HIV-positive women’s may intimidate them with regard to dis-of Anti-Violence Programs showed that feelings about themselves and may inspire closing sexual behavior to providers.transwomen comprised 44% of all LGBTQ them to take better care of themselves. In Despite the fact that there are manymurder victims. The same study found one study, HIV-positive women reported other diseases and genetic disorders withthat over half of LGBTQ violence survivors that pregnancy and childrearing provided higher risk of parent to child transmission,did not even report attacks, with the high- them a socially sanctified feeling of being and that assisted reproduction is not onlyest rates of non-reporting being among important and valued. Motherhood permitted but often encouraged in suchtransgender women of color. Not that became a highly valued identity that cases, HIV status has been used as a spe-surprising, given that transwomen also helped mitigate regret related to HIV cial reason to deny HIV-positive women theface disproportionate sexual, physical, and acquisition and other life circumstances. right to conceive naturally or with assis-verbal harassment at the hands of police, One study, published in AIDS Patient tance; the right to comprehensive familyaccording to Injustice at Every Turn—A Care and STDs in May 2010, demon- planning and counseling service; and theReport of the National Transgender strated that of 181 predominantly African right to retain custody of their children.Discrimination Study. Research shows that American HIV-positive women in care in Given last year’s HPTN 052 data, whichwomen, including transwomen, who have two urban HIV medical clinics, only 31% demonstrated a 96% reduction in HIVexperienced trauma are less likely to be reported a personalized discussion with transmission among heterosexual sero-adherent to medication and are more likely their HIV provider about their own fertility discordant partners when viral load wasto face multiple barriers to care overall. desires and intentions. Of those 31%, 64% suppressed, people living with HIV and/ Systemic violence against women also had initiated the conversation themselves or their partners who want to conceivepersists. Women living with HIV in the U.S. with their providers. The same study should be counseled about a range ofcontinue to report significant reproductive found that age was a strong predictor of options, including natural conception andrights violations, despite medical progress provider-patient communication about now pre-exposure prophylaxis (PrEP) forand research and treatment advances that pregnancy, with women under the age of the negative partner. Prevention justiceclearly demonstrate HIV-positive people 30 being six times more likely to have had demands that a range of HIV preventioncan live a long and healthy life, avoid pass- a general conversation about pregnancy options be available, including options thating the virus to children with appropriate with their providers. Another study of 118 are controlled by women. But women’scare and treatment, and even avoid pass- HIV-positive women conducted at the bodies are not only about making the virus to their sexual partners, when University of Rochester found that 54% Fully upholding our human rights includesviral load is suppressed and other factors of participants in that study had been upholding our right to be sexual beingsthat increase vulnerability (such as genital sterilized. The study found high rates of who experience joy and erotic pleasure.sores or ulcers) are not present. “tubal regret” among participants, and And for some of us, that means not using Importantly, for many women living pointed to a need to counsel women liv- condoms, with our partner’s knowledgewith HIV, motherhood may be one of the ing with HIV about reversible methods of and consent. This will require a consciousonly socially valued identities available to contraception. And research conducted by effort of providers counseling patientsthem. As described by Michelle Berger in the U.S. Positive Women’s Network found who have experienced stigma, sometimesWorkable Sisterhood, many women living that women living with HIV self-reported multiple concurrent stigmas, to providewith HIV in the U.S. already exist at the high rates of coerced abortion, tubal liga- accurate information about risk.intersection of race, class, and gender tion, and sterilization. When HIV-positive Despite the significant epidemic amongoppression, in addition to societal stigma women do have conversations with provid- U.S. women—it is estimated that 300,000about any behaviors they engage in, or life ers about their fertility plans, some health women are living with HIV in the U.S., andexperiences they have had—even prior to care providers perceive the pregnancy- 25% is no minor proportion—the NationalHIV diagnosis. “When they became HIV- related needs of women living with HIV HIV/AIDS Strategy, released in July 2010,positive all the positions they occupied— to be limited exclusively to the prevention failed to articulate a single goal specifi-drug user, sex worker, poor woman, were of vertical transmission. In addition, data cally for women. It does not detail how to24 SEP TE MB E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 27. HIV care is more than just medical care. It must be coupled with services designed to uphold sexual and reproductive rights and to address the impact of violence and trauma in women’s lives.reduce new HIV infections among women, living with HIV healthy. Now we have to will result in improved and sustainedto increase access to care, or a strategy to muster the political will and resources to health outcomes.improve women’s health outcomes. The make this possibility a reality. Just lastStrategy similarly failed to articulate the June, the Supreme Court of the United n Promoting research to better under-relationship between violence or trauma States upheld the Affordable Care Act stand the intersection of the biological,and HIV for women. And nowhere in the (ACA)—a piece of legislation that holds behavioral, and social science basesStrategy was the need to strengthen great promise for all women, and espe- for the relationship between increasedsexual health and reproductive choice for cially for women living with HIV. But HIV HIV/AIDS risk, domestic violence, andwomen living with HIV even mentioned. care and treatment is more than just medi- gender-related health disparities. And just this year, although the cation and more than just medical care,President’s proposed domestic HIV budget especially for women. It must be coupled 2012 marks a critical moment in thefor FY 2013 was relatively good, the Part D with services designed to uphold sexual global HIV response. It’s time we trulyprogram was the only part of Ryan White and reproductive rights and to address the commit to upholding women’s rights andfor which a decrease was proposed. Part impact of violence and trauma in women’s the rights of all people living with andD is the only program within Ryan White lives. Women living with HIV still face disproportionately impacted by HIV as anspecifically designed to meet the needs of unique vulnerabilities in 2012 and turning essential component to turning the tide ofwomen, youth, and families. This is indica- the tide on the epidemic for women will the epidemic. This must include:tive of an alarming trend away from wom- require a gender-sensitive response.en-centered care and supportive services Because women’s access to health n Meaningful and visible leadership ofwhen they are more critical than ever. care and ability to adhere to medication women living with HIV in all aspects of Thus, not only are we faced with a is related in large part to other life factors, decision-making.well-documented social and political including our physical, psychological, and“war on women” from the far right, with emotional safety, addressing logistical barri- n Research on and funding for women-all women’s rights and body sovereignty ers to care and promoting safety for women controlled prevention options—toolsbeing utilized as a political football in the is central to achieving the National HIV/AIDS which a woman can use without the2012 election cycle—but women living with Strategy’s goals and to achieving the prom- consent or even the knowledge of herHIV are literally facing disproportionate ise of the Affordable Care Act for women. partner, and which uphold our fullwars: violence, and a battle for their lives, Through ACA implementation, we must rights to sexual pleasure and sexualhealth, and dignity in their own communi- also keep in place services that facilitate and reproductive health.ties, neighborhoods, and homes. access to care for women living with HIV, And in the midst of all this, somewhere including but not limited to psychosocial n Bold action, including a plan and aalong the way we lost our will to address support, peer-based services, transporta- timeline from the White House Officethe gender nuances of the domestic HIV tion, and childcare. of National AIDS Policy to addressepidemic. Thankfully, President Obama’s March the intersections of violence against 2011’s HPTN 052 results demonstrated 30 release of a memorandum establishing women, HIV, sexual and reproductivethat achieving viral suppression in people a federal interagency working group to rights, and women’s with HIV can effectively reduce address the intersection of HIV/AIDS, vio-onward transmission of HIV. Thus, ensuring lence against women and girls, and gen- Naina Khanna is the policy director athigh-quality care and access to voluntary der-related health disparities presents a Women Organized to Respond to Life-treatment for people living with HIV should new opportunity to align the domestic HIV threatening Disease (WORLD) in Oakland,be one of our primary goals as an HIV com- response with international standards and California and coordinates the U.S. Positivemunity—to achieve the National HIV/AIDS to rectify some of these serious oversights. Women’s Network (PWN). She wasStrategy’s prevention and care goals. The workgroup is charged with, among appointed to President Obama’s Advisory In July, the International AIDS other things: Council on HIV/AIDS (PACHA) in 2010.Conference (AIDS 2012) returned to the She has presented and advised on wom-U.S. after a 22-year absence. The theme of n Integrating sexual and reproductive en’s rights and achieving gender-sensitive,AIDS 2012 was Turning the Tide Together— health services, gender-based violence human rights-grounded policies informedmeaning that we have the science to end services, and HIV/AIDS services, where by people living with HIV. Ms. Khanna wasnew HIV infections and to keep people research demonstrates that doing so diagnosed with HIV in 2002.P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 25
  • 28. black women,Society,and HIVAn expert talks aboutthe context of infectionTaken from an interview withAdaora A. Adimora, MD, MPH I n the mid-1900s, there was Editor’s note: Adaora A. Adimora, MD, MPH, received her medical degree from the rise of so-called “risk factor Yale University School of Medicine and Master’s in Public Health in epidemiology epidemiology.” People became (the study of how disease spreads among people) from the University of North much more focused on individual Carolina at Chapel Hill (UNC). Dr. Adimora’s work as both a physician and an epi- determinants, the individual behaviors and demiologist has focused on infectious disease, particularly HIV and its dispropor- characteristics of people that put them tionate effect on minority populations. Her groundbreaking research includes the at risk for disease. And these things are publishing of the first national data on concurrent sexual partnerships in women important. and analysis of the contextual (social, economic, and environmental) factors that But it turns out there’s increasing promote concurrent sexual partnerships among African Americans in the United evidence that in order to really make head- States. She has testified before a Congressional committee on the HIV epidemic way with the HIV epidemic in this country, and, for World AIDS Day in 2010, was invited to the White House to speak in a and in the world, there’s going to need panel discussion. The following is taken from an interview with Dr. Adimora. to be more attention paid to some of the —Enid Vázquez social factors that drive people’s behavior and also set them up to acquire infection.26 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 29. Tamara wilson, HIV-Positive since 1999, volunteers at chicago women’s aiDS project. She credits her mother with helping her to manage her HIV, and TPAN for helping to save her life. Photograph by chris knight has been found to put people other diseases, such as diabetes and heart at greater risk for HIV than disease. Black people are at greater risk serial monogamy, even if of acquiring HIV infection independent of people in both groups have their own low-risk behavior compared to had the same number of other groups. partners over the same I period of time. would also emphasize that we do have personal responsibility for T he thing that our behavior. However, I think some is really, really people tend to look at this work and important is the say, “Oh, they’re just blaming the environ- observation that ment, blaming the majority population.” it is the social context of That’s really not exactly it. While we do life in the United States that have personal responsibility for our behav- really contributes to those ior, I think it’s very critically important to partnership patterns. It’s realize that black people have substantially pretty clear that black people increased risks than other populations, as a whole tend to live under even with the same behavior. And this has very different circumstances been demonstrated. This is true for black in the United States than gay men as well as for black heterosexual white people do. And some men and women. of these characteristics that I would say to black women living with we have been studying, like HIV, keep the faith. Teach your sons and incarceration for example, daughters all the lessons you’ve learned. not only contribute to HIV, You have a wealth of experience, and cer- but they’re also emblem- tainly resiliency. atic of the oppression that We need to work in whatever ways we minority populations are can to change the social and economic living under in the United factors that are putting our people at risk, States. A history of incarcera- and putting our children at risk. tion, for example, which is It would help if everyone in the United experienced by black men States had health care. It’s astonishing to more than any other group, me that, apparently, health care is not a It appears, for example, that the con- primarily as a result of the war on drugs, right. It remains an open question in thenections between black people in the U.S. lowers the possibility of employment and United States that people should havediffer to some extent compared to the increases the risk of poverty, while at the health coverage, even though it’s clearlyconnections among white people in the same time disrupting the stability of long- most cost effective for the nation as asense that there are more disassortative term partnerships. Incarceration and death whole. This is a civil rights issue. That’srelationships, or relationships between due to violence and disease in black men what I mean by working to change thepeople with different risk factors. There’s lead more black women to enter into rela- economic factors that put people at risk.more of a tendency for African Americans tionships with men who have greater risk Health care availability, affordability forto have relationships with people who factors for HIV than they do. all, would make a huge difference in termshave much greater risk for HIV than they This doesn’t mean that each and of transmission of HIV, and also in termsthemselves do. There’s also the issue of every minority, each and every African of the personal health of people who arepartnerships that overlap in time, or sexual American, in the United States is poor and living with HIV.concurrency. In addition, they tend to find oppressed. But as a whole, it is these typespartners within their communities, which of factors that contribute to the spread go to to readare often segregated. Sexual concurrency of HIV, STDs, and in fact different rates of published studies and abstracts.P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 27
  • 30. ‘Everyone Needs a Support How one therapist helps HIV-positive women learn to take care of themselves by Enid Vázquez F or more than 10 years, psychotherapist Kesha Burch, LCPC, has counseled HIV-positive women at the Chicago Women’s AIDS Project (CWAP). Whether positive or negative, the women she counsels face similar problems, she says, with health being an added and important concern for those living with HIV or any other chronic illness. “The HIV-positive women I work with have the same types of issues, but it’s even more important that they address emo- tional and life concerns because their health depends on it,” says Burch. While women often focus on interpersonal problems and family stress, improved health is always an underlying goal of Burch’s work at CWAP. “Stress that comes from emotional and psychological problems can be a threat to a woman with HIV,” she says, pointing out that stress and depression are known to increase mortality for positive women. Photo: ProELLEments Photography Nevertheless, she finds that many women worry about their lovers and fami- lies more than they do about themselves, even in the face of HIV. “Women in our society are rewarded for taking care of other people,” Burch said. “We often don’t think about taking care of ourselves independent of some- one helping us with that or coaching us through it. We may not be socialized to be assertive. And of course, all of that really comes through in thinking about how to28 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 31. System’ negotiate safe sex practices and so on and anybody’s mental health and physiological a class or to stop talking to someone who so forth. health as well. It helps anybody to become is not doing right by them—any behavioral “You don’t want to get away from all more resilient and do better.” steps that reinforce the message that the nurturing,” she notes, “but how do you What’s different for people living with a they’re of value.” take care of other people and take care of chronic illness like HIV, she says, is that the Going for counseling, she believes, is yourself as well? There has to be some bal- same skills they use for creating healthy one big step towards self-care. ance. Hopefully, counseling helps women relationships also work in managing their “When you show up to therapy, that’s achieve greater balance. It’s about feeling health care. just in and of itself an affirmation that empowered enough to be themselves and “Sometimes negative issues can seep you’re worthy of a better life and this is to pursue things that they’re worthy of into their attitudes towards their health, part of what you are going to do about it,” having in their lives,” says Burch. their health care, and their provider. Burch says. “There’s always some kind of Instead, she finds that many women When I talk to them about using skills in a spark I see that pulls women in, something settle for less than they deserve, which can relationship, I recognize that those asser- I can’t describe that gives them just a little begin a cycle of more unhappiness in their tiveness skills can help them ask for what bit of hope that things could be different. lives. Others have problems establishing they need from their medical provider so Especially for the women who are deal- healthy relationships and may have nega- they don’t just think that they go to their ing with addiction, it’s that little piece of tive coping skills, experiencing difficulty doctor and are told what to do, but report themselves that helps to pull them out, with attachment (including having many things that are of concern to them and to show up on the doorstep of a detox or sexual partners) and figuring out who is ask, can we check into this?” Burch said. drug treatment program. There’s a ton worthy of being with them. These women “Sometimes I rehearse with them. ‘What of internal strength and resiliency there, often feel that they have to accept bad would you like to say when you go to the and that’s something that I reflect back to behavior in order to be in a relationship or doctor?’ I had a client who felt that her them sometimes. ‘Look at all that you’ve are confused about what they have to do doctor wasn’t listening to her. There were been through to get to this point.’ to be in one. some things that she thought needed to “When you see that spark, that’s the “There are also issues around disclosure be addressed, but she was complaining essence of who that person really is,” says and that relates back to self-esteem and about it to other people and not taking it Burch. “The trick is to get them to see it, self-worth. It’s important for them to com- back to the doctor to say ‘this really wor- despite their circumstances.” municate with partners for their own health ries me’ or ‘I wish that at my last appoint- She sometimes suggests that people and also so that they can be truly known ment we could have talked about this.’ make positive affirmations, keep a journal, and accepted and loved,” she said. “This is “So I helped her narrow down her com- and read certain books or authors. While similar to the things that other people are plaints and her concerns to three things she can help weed out negative beliefs dealing with, being true to themselves.” per visit, because there’s some reality people have about themselves that they Once a woman has a healthier relation- there too. The doctor cannot spend 90 may not even be aware of, these activities ship with herself, her other relationships minutes on a visit. The alternative was for can keep people focused on messages are healthier too. Burch cites support her to feel consistently frustrated with her that are the opposite of the negative groups and support buddies as being experience with the doctor,” Burch said. beliefs and feelings. “It’s about changing important for positive women, along with “She didn’t realize she could ask for what that message,” she said. caring friends, family members, and sup- she wants. For the first item on her list, she She sometimes has clients take time portive partners. was able to get a referral to a specialist. to just relax and sit silently. Many people “We were created to be in relation- That also then reduced her anxiety and are often too busy running around doing ships with each other. It’s not just about worry about what was going on with her.” everything they have to do to give them- romantic relationships, but about learn- She notes that not being able to com- selves time for reflection and hearing ing how to be a good parent and how municate with a provider or understand what’s inside them, she said. to have a healthy friendship…all kinds of what was being asked of them could lead Perhaps the most important part of relationships that are essential to human some people to not take their medication her work, she believes, is treating people existence,” she says. “Everyone needs a correctly. with kindness and respect. “That’s really support system, and the healthier your Burch pointed to other practical things at the core of the Chicago Women’s AIDS support system, the better off you are. people can do to support their self-worth Project,” she notes. “The mission state- It’s about the people in your life who and value. “It could be as simple as putting ment is about empowering women, seeing are for you and support you. That helps on make-up. It could be signing up to take the value in each and every woman.” P osi t i ve S E P T E MB E R+ OC TOB E R 2012 29
  • 32. Nine Months to BIRTHHIV and pregnancy—keeping yourself and your baby healthyby John Verna, MS, PA-CW ell, as you suspected, your pregnancy associated with decreased residual risk of test is positive. Congratulations! Pregnancy can transmission and favors initiating HAART drugs as early in pregnancy as possible be an exciting time, and a really wonderful expe- for all women.” In other words, start- rience. Of course, now that you’re expecting, you ing HAART (highly active antiretroviralprobably have lots of questions, some of which relate to how your therapy) drugs early to control the viral load as much as possible decreased theHIV-positive status will impact your pregnancy and your baby. chances that the virus would be transmit- ted to the baby. In fact, we know that hav- The goal in every pregnancy is to keep labor and delivery, or by breastfeeding. ing an undetectable viral load substantiallyboth mom and baby healthy—and I’m We’ll talk about what you can do during lowers the risk of transmission of HIV tohappy to say that this is a goal that’s well pregnancy, during labor, and after your the fetus and lessens the need for consid-within your reach. Just because you have baby is born to decrease the chances of eration of cesarean delivery (C-section).HIV does not mean you can’t have a happy, transmitting the virus. That’s why I have always suggested thathealthy pregnancy, and a happy, healthy my patients start HAART immediatelybaby. Basically, the same things that keep How to reduce the risk of after learning about their healthy will keep your baby healthy. transmitting HIV to your So, if you are not currently taking HIVRisks of transmitting the virus to your baby baby during pregnancy medications (whether you are treatment-decrease as your own viral load decreases. naïve or have taken them in the past), tell K In fact, if you are on HIV medication eeping your viral load your HIV specialist about what medica-and take the medications as prescribed, low is important during preg- tions you’ve taken in the past and providethere’s only a 1% chance of passing HIV nancy to reduce the risk of all laboratory tests (genotypes, pheno-to your baby. In my 11 years as an HIV transmission. Regardless of types, HLA B*5701) and be honest aboutspecialist, and having seen over 150 preg- what is recommended based solely on any adherence issues that you’ve had innant patients with HIV, I have never had your CD4+ and VL levels, you may want to the past. Also talk about any tolerabilitya patient pass HIV to her baby. However, start taking HIV meds as soon as you learn issues and drug allergies you have hadif you’re not on HIV meds, or don’t take you are pregnant. Yes, there are guide- with any old regimen(s).them like you’re supposed to, there’s lines from the Department of Health and As soon as you learn that you’re preg-a 25% chance (basically a one in four Human Services (DHHS) that recommend nant, you should contact your HIV special-chance) that you will pass HIV to the baby. when to start treatment based on CD4+ ist to discuss your options for medicationEven medication at the last minute, at the and VL, but there are groups of people and to review what you’re currently takingtime of labor, cuts the risk and some states for which treatment is recommended no to make sure your medications are safehave laws about testing mothers during matter what. Pregnant women are one of for the baby. If you are taking HIV medica-labor if an HIV test result is not on file for those groups. We are trying to prevent tion, like HAART, your clinician will likelythe pregnancy. your baby from becoming infected. continue your treatment. However, if you So let’s talk about what you need to Earlier initiation of therapy may are taking a regimen that contains efavi-do to keep both you and your little one be more effective in reducing in utero renz (Sustiva, which is also a componenthealthy. Many women wonder how HIV transmission. In fact, a 2010 study con- of Atripla), you’ll need to make a change.can be transmitted to the baby. HIV can ducted in France found that “early and Efavirenz is a Pregnancy Category D medi-be transmitted during pregnancy, during sustained control of HIV viral replication is cation, meaning it should not be taken30 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 33. IRTH DAY while pregnant, especially during the first trimester of your pregnancy. It’s reassuring, however, to know that of 14 studies with 1,345 pregnant women on efavirenz published in the journal AIDS two years ago, there was only one infant born with a birth defect, a rate no different from the general population of pregnant women. Many women wonder if HIV medications are going to harm their babies or themselves. Photo © Jani Bryson Several HIV medica- tions have been found to be safe for pregnant women and babies. As a matter of fact, there is an international registry (the Antiretroviral Pregnancy Registry) that moni- tors for potential birth defects in infants exposed to HIV medi- cations in utero. The Department of Health and Human Services (DHHS) currently recommends Kaletra and Combivir taken twice a day. Ask your HIV specialist what is going to be best for you and keep in mind that results of any past or current P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 31
  • 34. You should have discussions with both your obstetrician and HIV specialist to help determine what is best for you and your baby. If you don’t have a specialist, now might be a good time to seek one out.genotype test will also be considered. If abnormal, genetic counseling is recom- viral load (another important reason toyou have a viral load of more than 1,000 mended. Additional testing may be take your HIV meds as prescribed). Thecopies, your provider will order a geno- needed for an accurate diagnosis. These American College of Obstetricians andtype before starting you on medications. tests include chorionic villus sampling Gynecologists (ACOG) has recommendedAny drug resistance found by the test may (CVS) and amniocentesis, both of which considering a scheduled C-section deliverylimit your treatment options. are considered “invasive.” During amnio- for HIV-positive women since 1999. A So there is a lot to consider here, and centesis, a small amount of amniotic fluid scheduled C-section is recommended foryou should have discussions with both is removed by inserting a long, thin needle women with a viral load that’s greater thanyour obstetrician and HIV specialist to through your belly and into the womb. 1,000 copies/mL near the time of deliveryhelp determine what is best for you and In CVS, chorionic villi cells are removed (36 weeks’ gestation) and for any womanyour baby. Assuming that you have an from the placenta, either in the same way with an unknown viral load. It is alsoHIV specialist, your specialist will refer amniocentesis is performed or through the recommended for women who did notyou to an obstetrician who has experience cervix using a catheter and gentle suction. receive HIV medication during pregnancy.with HIV-positive mothers. If you don’t Because these tests are invasive, they In these situations, ACOG recommends ahave a specialist, now might be a good involve at least a theoretical increased scheduled C-section at 38 weeks’ gesta-time to seek one out. You can visit the risk of transmitting the virus to the baby. tion in order to decrease the likelihood ofwebsites of the American Academy of HIV To date, there have been 159 reported onset of labor or rupture of membranesMedicine ( and the Gay invasive procedures on HIV-positive moms before delivery.and Lesbian Medical Association (http:// with no transmission of HIV to the baby. For women with a viral load that’, or call the National AIDS Hotline In all cases, women were on HAART with less than 1,000 copies/mL near time of(open 24 hours a day every day of the undetectable viral loads and though no delivery, a scheduled C-section is notyear) at 1-800-CDC-INFO (232-4636). transmissions of HIV have occurred, a routinely recommended. So, if your viral small increase in risk can’t be ruled out. load is less than 1,000 copies/mL near theThe right doctor Therefore, any HIV-positive woman under- time of delivery, your choices for laborand the right tests going any invasive procedure should be and delivery are essentially the same asI t can be very helpful to on HAART and have an undetectable viral a woman who doesn’t have the virus, and have an obstetrician with experience load at the time of the procedure. you can have a vaginal delivery. The risk treating HIV-positive women, in part Some experts consider CVS too risky of perinatal transmission of HIV in women because the decisions regarding to offer to their HIV-positive patients and with an undetectable viral load (at 36whether to use certain “invasive” genetic recommend limiting invasive procedures weeks gestation) is 1% or less, even with atests can be difficult. Many pregnant to amniocentesis only, but existing data vaginal delivery. No evidence is availablewomen undergo a variety of screening on transmission risk associated with to show that this risk can be lowered fur-tests. During the first trimester these tests these procedures are limited. Invasive ther by performing a scheduled C-section.include a fetal ultrasound and a blood testing procedures should be discussed Remember, a C-section is major surgerytest for mom. This screening process can thoroughly with your OB and between and has its own risk of complications, com-help determine the risk of the fetus having you and your partner. Your OB (or genetic pared with vaginal delivery.certain birth defects (Down syndrome, tri- counselor) will discuss the pros and cons Under new DHHS guidelines, onlysomy 18, or trisomy 13). Second trimester of invasive testing with you. But ultimately, women with viral loads of more than 400prenatal screening may include additional whether to test (or not to test) is a per- copies/mL should be given IV zidovudineblood testing (of mom) called Multiple sonal decision. (AZT) continuously, even if your geno-Markers. These include alpha-fetoprotein type shows resistance for this drug. The(AFP), hCG, estriol, and inhibin. These Lowering the risk use of AZT is recommended because ofmarkers provide information about a during labor and delivery its unique characteristics and its proven Awoman’s risk of having a baby with genetic gain, the goal is to record in reducing transmission.conditions or birth defects. This screening limit the baby’s exposure to To help prevent transmission, youris usually performed between the 15th and the virus. So it’s probably not baby will be given liquid AZT immediately20th weeks of pregnancy. surprising that your options after birth and this will be continued (by If the results of these tests are for labor and delivery depend upon your you at home) twice a day for six weeks.32 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 35. Women in the U.S. with HIV should not breastfeed their babies due to increased risk of transmitting the virus. Baby formula is a safe and healthy alternative. Unfortunately, women in the U.S. with months of their lives. This does not mean Again, just because you have HIV doesHIV should not breastfeed their babies that they have HIV. Rather, it means that not mean you can’t have a healthy preg-due to increased risk of transmitting the the baby has simply been exposed to his/ nancy and baby. In fact, just this past yearvirus. Baby formula is a safe and healthy her mother’s HIV. The second test, PCR I had an HIV-positive patient who followedalternative to breast milk and there are testing, looks for the virus and not just the her regimen and had a healthy pregnancy,many brands and options that are avail- antibodies to the virus. It is this test that and an uncomplicated vaginal birth. Sheable to you. Also, while the risk is very can tell whether the baby has HIV or not. and her husband welcomed a healthylow, HIV can also be transmitted to a baby This test will be done during the first few HIV-negative baby into the world. It can bethrough food that was pre-chewed by an days of his/her life. done, and it is done by lots of women justHIV-positive mother (or caretaker). To be The PCR test will be repeated several like you every day. So, again, congratula-completely safe, babies should not be fed times on your baby. To know for certain tions!pre-chewed food. that your baby is not infected with HIV, the baby must not be breastfeeding and must John Verna has spent his entire profes-Does the baby have HIV? have two negative PCR tests, the first at sional career providing health care to indi-T here are two types of one month (or older) and the second at viduals with HIV. For the past three years, tests that will be performed on four months (or older). Many experts con- he has worked at Access Community your baby to find out if he or she firm the HIV-negative status of the baby Health Network in Chicago. John knows has HIV. The first is the HIV anti- with an HIV antibody test at age 12 to 18 just how special (and scary) pregnancybody test. All babies born to a mom with months. To be diagnosed with HIV, a baby can be, as he and his wife recently wel-HIV will test positive for the first several must have two positive PCR tests. comed their first child. Are you Aware? Get Positively Aware.❑ 1-year subscription: $30 donation. Bill to: Six bi-monthly issues every year. Subscriptions are mailed free of charge within the U.S. to those who are HIV-positive. Card Number Expires ❑ Bulk copies (U.S. only): Name on Card Available free of charge; however, a donation is requested to cover shipping. No international bulk orders. Minimum order 10 copies, Signature (required) shipped via UPS (No P.O. Box addresses): ______ copies Charge my: ❑ Visa ❑ MasterCard ❑ American Express❑ Back issues: $3 per copy. Enclosed is my payment. total amount: $___________ ______ copies: July+August 2012 Charges will appear on your credit card statement as TPA Network. Test Positive ______ copies: May+June 2012 Aware Network (TPAN) is a not-for-profit organization dedicated to providing ______ copies: March+April 2012 (HIV Drug Guide) support and information to all people affected by HIV. ______ copies: January+February 2012 Ship to:❑ Sign me up for the E-News, PA’s weekly email newsletter: Name Agency (if applicable) email address Address❑ Enclosed is my donation of City State Zip ❑ $25 ❑ $50 ❑ $100 ❑ $250 ❑ $500 ❑ $_______Your contribution helps provide subscriptions to people who can’t Phone e-mailafford them. All donations are tax-deductible to the full extent allowed Mail to: Positively Awareby law. 5537 N. Broadway St.P osi t i ve Chicago, IL 60640P T E MB E R+ OC TOB E R SE 2012 33
  • 36. CONFERENCE UPDATEAIDS 2012WASHI N GTO N , D . C .Cure caucus: (above, from left) Sharon Lewin, MD, PhD; Rowena Johnston, vice president of research, amfAR; Steven Deeks, MD,University of California San Francisco; Françoise Barré-Sinoussi, new president of the International AIDS Society; Mark Harrington,Treatment Action Group; and UNAIDS executive director Michel Sidibé review developments in HIV cure research. Fauci, Director of the National design, Analytical Treatment After a 22-year absence, the International Institute of Allergy and Interruptions (ATI), and AIDS Conference returned to the U.S. following Infectious Diseases, NIH. In informed consent. President Obama’s lifting of the federal immigra- his opening remarks, Fauci Sharp noted that some stated that a cure that only cure research may be quite tion and travel ban against people from outside the benefits 0.01% of the popula- risky, with little chance for U.S. with HIV/AIDS. An estimated 22,000 activists, tion is not going to excite benefit. He asked what the advocates, clinicians, and others converged on anyone—it has to be scalable. “reasonable” risks are for HIV- Washington, D.C. in July. For conference webcasts During the community positive individuals who will and transcripts go to literacy session Australian be participating in early and researcher Sharon Lewin, MD, potentially dangerous cure PhD, gave an overview pre- studies, and how can we bestIAS cure workshop highlights sentation addressing major barriers to a cure, includ- protect them? Developing guidelines for determin- Photos: ©IAS/Steve Shapiro-Commercialimage.netadvances and challenges ing what actually defines a ing when potentially risky cure and potential targets treatment interruptions areBy Jeff Berry and mechanisms, as well as appropriate is a critical next underscoring the importance step, said Sharp, and com-At this year’s conference we being done in the seven dif- of assays for future research munity input and communityheard about exciting advances ferent areas of research that and the need for these tests advisory boards are essentialin cure research, as well as the agenda has identified as to undergo rigorous stan- in ensuring ethical, patient-the launch of the International highest priority. dardization with labs before oriented studies.AIDS Society’s (IAS) “Towards The workshop, co- going into wider use. An elegant presentationan HIV Cure” global scientific chaired by Steven Deeks, Activist and Positively given by Robert Siliciano, MD,strategy. A two-day pre-con- MD, University of California, Aware contributor Matt PhD, Johns Hopkins Universityference workshop brought San Francisco, and IAS Sharp talked about his expe- School of Medicine, was per-together researchers and president and Nobel laureate riences as a cure research haps one of the clearest andcommunity advocates to pre- Françoise Barré-Sinoussi, study participant, and the most concise presentationsview some of these advances Pasteur Institute, Paris, was challenges that lie ahead, I’ve ever seen on the basicsand provide insight into work opened by Dr. Anthony S. including ethical study of immunology, HIV infection,34 SE P TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 37. and the multiple molecular animal models for Other news onmechanisms which maintainHIV latency. HIV is not com- use in future cure research, vaccine the cure frontpletely eradicated from the and immune-based A group of patients in Francebody by standard antiretrovi- therapies and the role who became infected withral therapy because some of it of immune activation HIV and then started onlies resting in memory CD4+T- and inflammation in antiretroviral therapy (ART)cells, which can proliferate for viral persistence. early in the post-infectionan average of 73.4 years in The conference period have shown no signsthe human body. However, if ended with a slightly of a resurgence of their HIVyou stop taking therapy, the unorthodox, yet infection seven years aftervirus typically comes roaring immensely informa- being taken off therapy.back within a matter of weeks. tive and entertaining “These results suggestOne eradication approach presentation by Fred that…antiretroviral treatmentwould be to remain on stan- Verdult of Amsterdam should be started very earlydard ARV therapy to keep on the psychosocial after infection,” said Charlinethe virus suppressed, while at benefits of a cure for Bacchus, lead researcherthe same time purging these HIV. Verdult, after Sharp turn: PA contributor Matt of the study at the Frenchlatent reservoirs and block- finding out he had HIV Sharp talks about his experiences as a National Agency for Researching them from infecting new in 1998, started Volle cure research study participant. on AIDS and Viral Hepatitiscells, so that they would have Maan, an organiza- (ANRS).nowhere to go and eventually tion that conducts studies of future infection. The survey The patients in the ANRSdie off, ridding the body of and communication projects also asked about disadvan- EP47 VISCONTI cohort (knownHIV. But it’s complicated—the on health and disease to tages of living with HIV—the as the Visconti Cohort) havenumber of latently infected encourage people to live full risk of experiencing health an extremely low reservoir ofcells may be much higher and worthwhile lives. Volle problems in the future was HIV in their cells similar to thatthan previously thought, by as conducted a survey of 458 the number one answer, while of “HIV controller” patients.much as 50-fold, according to individuals in the Netherlands psychosocial effects such as HIV controllers are those whoSiliciano. asking how important to them stigma and the risk of infect- are able to control their HIV Sarah Palmer, PhD, Swedish a cure for HIV is, why a cure is ing someone else were also infection without the use ofInstitute for Communicable important, and which type of highly ranked. ART for an extended period ofDisease Control and Karolinska cure is preferred. Deeks closed the two- time, and represent about oneInstitute, gave a presentation The majority of the survey day workshop by declaring out of every 300 people whoon measuring persistent HIV respondents indicated they Verdult’s presentation the have HIV.infection, including an excel- were in good health, with “highlight of the meeting,” In the study, 12 patientslent slide outlining some of the only 14% stating that their and remarking on the spirit started therapy within 10advantages and disadvantages health was poor. Seventy-two of collaboration among the weeks of infection, were onof the four currently available percent said that it was very attendees. Barré-Sinoussi said therapy for an average ofassays which measure persis- important to them to be cured that next steps include the three years, and were able totence. In concluding her talk, of HIV, while another 22% said efforts of the working groups, control HIV after an averagePalmer emphasized that “look- it was somewhat important. including a newly added of seven years off ahead, to determine the Yet when asked about how a social sciences research team At a press conference Asiereffectiveness of curative strat- cure might look, participants and an ethics working group, Saez-Cirión, one of the studyegies, our field will need to had varying responses. 95% as well as a call for more cure investigators, said theydevelop a more standardized thought that a total cure research funding and collabo- were interested in findingassay system which is sensi- without any risk of future ration. The next IAS Towards out whether HIV controllertive, efficient, less costly, and transmission or infection very an HIV Cure workshop is status could be induced. Headaptable in local settings.” desirable, while only 41% con- scheduled for immediately estimated that 5–15% of those Other presentations sidered it desirable to have a prior to the 2013 international treated early could eventuallycovered recent advances in cure that had no risk of future conference in Kuala Lumpur, control HIV off therapy. Butthe development of accurate transmission but carried a risk Malaysia. don’t stop those HIV medsP osi t i ve S E P T E MB E R+ OC TOB E R 2012 35
  • 38. CONFERENCE UPDATEAIDS 2012WASHI N GTO N , D . C .just yet—not only would weneed to figure out how toidentify who would have this and no further decline of CD4s in the other. Unlike Timothy Ray Drug updatestype of response to early Brown, the “Berlin” patient, by Enid Vázqueztreatment, but also get those who received cells that wereindividuals onto treatment resistant to HIV because they Complera, the newest single the market. Development ofimmediately following infec- lacked the CCR5 receptor, tablet regimen (STR), com- INSTI drug resistance wastion. The other question one these patients received cells prised of rilpivirine (Edurant) low (about 7%) and similarmight ask is, could some of that were CCR5+. It is believed plus emtricitabine/tenofovir with both medications. Thethose in the study already that the antiretroviral treat- (Truvada), continues to hold 700 participants in this studyhave been HIV controllers to ment protected the donor its own. Previously, it had were treatment-experienced,begin with? While the genetic cells from becoming infected, been shown to be non-inferior so they were less likely toalleles commonly associated leading one researcher to refer to Atripla, another STR, made achieve undetectable viralwith HIV controllers was not to it as “a form of PrEP [pre- of efavirenz (Sustiva) plus load. Overall, 47.6% of the 351found in these patients there exposure prophylaxis] at the emtricitabine/tenofovir. This participants on dolutegravirmay be other factors playing cellular level.” Further tissue time, however, it has been had undetectable viral loads,a role, which researchers now sampling and analytic treat- shown to maintain an unde- compared to 45% of those onare trying to uncover. ment interruption will need to tectable viral load (of less Isentress. Another study looked be conducted to assess the full than 50 copies/mL) in people In 48-week results fromat two men who had been extent of the reduction of HIV who were switching from the SPRING-2 study, dolute-infected with HIV for many in the reservoir. a Norvir-boosted protease gravir was as effective asyears, on suppressive anti- At a press conference inhibitor (PI) combination. Isentress, with 88% vs. 85% ofretroviral therapy (ART), and held the same day these two These were 24-week participants in the two groupswho underwent treatment of studies were presented, David results in nearly 500 individu- achieving undetectable virallymphoma via an allogenic Margolis, MD, University of als, of whom two-thirds were load. The participants were(meaning foreign, or from North Carolina at Chapel switched to Complera and the treatment-naïve (first timeanother donor) stem cell Hill, was asked by a reporter rest maintained on their PI on HIV therapy), See moretransplantation. Both patients about the media’s role in regimen. Overall total choles- dolutegravir news in Briefly.received a milder form of reporting on cure advances terol, LDL (“bad cholesterol”),chemotherapy, known as the responsibly and accurately, and triglycerides decreased Getting a boostconditioning regimen, prior while at the same time not to a greater extent among The investigational drug cobi-to transplant, which allowed giving too much hope or cre- those switched than on those cistat (COBI), which booststhem to stay on their ART dur- ating complacency. maintained on their PI. The drug levels (a “pharmacoen-ing and after the transplant. “That’s your job,” said differences were statistically hancer”), was given withOne patient was on Atripla, Margolis. “We are very significant. Reyataz plus Truvada andthe other on Isentress/ careful about what we say “We all know that regimen compared to Norvir-boostedTruvada. HIV was detectable [as researchers], and we’ve simplification improves quality Reyataz plus Truvada, ain their cells immediately after defined cure several differ- of life,” said Frank Palella, MD, preferred regimen underthe transplant, but the trans- ent ways. Different kinds of of Northwestern University U.S. treatment guidelines. Inplanted donor cells replaced cure and eradication mean when he presented these Phase 3 study results after 48the patients’ own lympho- different things to different results from the SPIRIT study. weeks, cobicistat-boostedcytes over time. The amount people, and have different Also continuing to do Reyataz was non-inferiorof HIV DNA in their blood levels of value. Perhaps we well: the still investigational to Norvir-boosted Reyataz,cells decreased and became should come up with a word, elvitegravir and dolutegravir, with high rates of virologicundetectable, for up to two like ‘complicated-eradication- both integrase inhibitor medi- success (viral loads of lessyears now in one patient and chemo-immunotherapy,’ to cations (INSTIs). In 96-week than 50 copies per mL) andthree-and-a-half years in the slow people down. But you results from Study 145, elvite- similar safety and tolerability.other. CD4s declined in both can’t argue with the goal and gravir continued to be non- Nearly 700 individuals par-patients initially, followed by you can’t get there without inferior (as it was in earlier ticipated in Study 114.a robust CD4 increase in one working on it—and I can’t say 48-week results) to Isentress, “Cobicistat appears to bepatient, and the stabilization how long it will take.” the only INSTI currently on an effective drug for boosting36 SEP TE MB E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 39. protease inhibitor levels, said the situation is with greater potential for co- such that many sex formulation,” said presenter workers are afraid Joel Gallant, MD, MPH of to carry condoms Johns Hopkins University because of the police School of Medicine. He noted harassment this can the various co-formulations cause. In fact, even of cobicistat with protease outreach workers inhibitors that are in develop- have been followed ment. Moreover, he pointed by the police so that out that, “[Norvir]-boosted sex workers can be Reyataz is known to be a arrested when they lipid-friendly regimen and take the condoms cobicistat is no different.” offered. As advocates “This is all good news,” pointed out, it is My body, my business: Discussing sex workers’ issues. said session co-facilitator not illegal to carry Christine Katlama, MD, of condoms. Rather, Risen, MD, MPH, PhD, of Save “rescue and save” sex work- Hospitalier Pitie-Salpetriere in confiscation serves as another the Children, said, “Violence ers should be called “arrest Paris, “because all the drugs avenue of illegal detention against female sex workers and abuse.” work and when they don’t and intimidation. spreads far beyond individual In the session titled “The work there is no resistance.” Moreover, criminalization incidents and factually is gen- Oldest Profession: Is Sex of consensual sex work keeps der-based violence.” Among Work Work?,” Naomi Akers Risky business workers under dangerous con- ditions. In the “Criminalizing other recommendations, Save the Children in Bangladesh said equating sex work with human trafficking is insulting for sex workers Condoms and Sex Work” says behavioral change cam- and hurts both sex workers, session, Acasia Shields, author paigns should be aimed at who are targeted by raids, Several sessions looked at of Criminalizing Condoms, a changing community percep- and victims of trafficking, abuses that put sex workers report from the Open Society tions and creating acceptance who aren’t helped at all. at risk for HIV—and we’re not Foundation, said, “Police of sex workers in mainstream “When you’re doing sex work, talking sex. routinely search sex workers society, and that maternal and of course you see it as work. Instead, it’s police actions to confiscate and destroy con- child services should focus It buys you food and helps around the world—including doms. This affects their ability more on issues related to sex you take care of your family,” here in the United States—to to practice safe sex and they workers. she said, calling trafficking confiscate condoms and know it.” Darby Hickey of the Los “horrible.” to use them as evidence Of the U.S. sex workers Angeles chapter of SWOP Deanna Kerrigan of thePhoto: © IAS/Ryan of prostitution that puts surveyed, 52% said they (Sex Workers Outreach Johns Hopkins Bloomberg sex workers at risk for HIV. were afraid to carry condoms Project), said, “We think School of Public Health in Advocates because of fear of police sometimes that countries like Baltimore detailed findings harassment. Shields said the United States are a world of higher HIV risk among sex other abuses include apart from countries like workers around the world, and threats of arrest to Bangladesh, but unfortunate- said support for sex workers’ exhort sex, ly, we face the same issues. groups, as well as human and and beating It is about law and about health rights is critical for all or raping sex policy change, but also about sex workers, including men workers. how police operate outside and transgender people. Discussing the range of law. So we need Labor rights, the focus of the the findings to change policies, hold- session, would help to elimi- from the first ing police accountable, and nate stigma and discrimination national congress address the wider societal and increase HIV prevention of sex workers in indifference and downright efforts for this group of work- Bangladesh, Simon hostility.” She said efforts to ers, she said. Richard Howard P osi t i ve S E P T E MB E R+ OC TOB E R 201 2 37
  • 40. CONFERENCE UPDATEAIDS 2012WASHI N GTO N , D . C .of the International LabourOffice (ILO) said, “Decentwork [as outlined by ILO] At the center of researchshould exist for all human A look behind the National Institutes of Healthbeings, regardless of whetherit’s legal or not, whether it Story and photographs by rick Guascotakes place in a formal orinformal environment.” With an annual budget Basic research is Underscoring the human approaching $31 billion, the first conducted to find arights issues affecting sex National Institutes of Health promising vaccine can-workers were protests against (NIH) is the medical research didate. A vaccine is ofthe U.S. Consulate for deny- agency of the federal govern- little use, however, if iting them visas to attend the ment and the largest source of can’t be efficiently andconference. funding in the world for medi- safely mass-produced, In the final analysis, the cal research. The NIH is also so it undergoes testsex workers movement advo- a driving force behind AIDS production for goodcates for decriminalization of and HIV vaccine research; manufacturing practic-sex work as the most impor- 10% of the agency’s budget es and quality control.tant way of protecting their —$3 billion—goes toward From there, a successfulhuman rights. HIV/AIDS, funding research candidate then goes “The epidemic is not conducted at academic, com- to clinical trials todriven by the lack of a pill mercial, and private labs, as determine how safe it isor a gadget, the epidemic is well as at NIH headquarters in for patient use. Resultsdriven by repression,” said Bethesda, Maryland. from the trials areplenary speaker Cheryl Overs, Some 75 buildings are reviewed in a series ofSenior Research Fellow at scattered throughout the assessments. If the vac-the Michael Kirby Centre for 312-acre NIH campus. During cine candidate doesn’tPublic Health and Human the International AIDS pass this process withRights at Monash University Conference, the agency flying colors, it goesin Melbourne. hosted a press tour of two back to basic research, She founded a sex work- of those buildings, offering a and the cycle begins Vaccine chief: The NIH’s Vaccineers’ rights organization in closer look at the role the NIH again. The three-phase Research Center is headed byAustralia in the ‘80s and the plays in clinical research and cycle can take 10–18 years Dr. Gary J. Nabel.Global Network of Sex Work treatment. for a would-beProjects in the ‘90s. She has vaccine to complete. search for an HIV vaccine.worked in HIV policy and pro- The vaccine center Nabel said that the search Although it took 17 years togramming for male, female, Opened in 2000, the Vaccine for a vaccine has been develop a vaccine againstand transgender sex workers Research Center is a five-story elusive, because, “HIV is con- hepatitis B, he pointed outin more than 20 developing facility where research is done stantly mutating, changing its that a polio vaccine tookcountries. “And that brings to find vaccines not only for genetic make-up and protein 45 to law and policy,” she HIV, but for influenza, Ebola structure.” “A vaccine is at least 10continued. “Sex workers virus, and other diseases that “HIV is a sugar-coated years into our future,” Nabelfrom Sweden to Singapore pose global health risks. virus,” Nabel explained. said. “What we’ve learned isto Swaziland all say that the Gary J. Nabel, MD, PhD, Sugars produced by the body that HIV is a very crafty virus.”greatest threat to their health director of the Vaccine are converted into proteins by While one or two vaccineand human rights is the law Research Center, opened the the virus. “This makes it invis- candidates look promising, itthat makes it impossible to tour, explaining how the facil- ible to the body’s immune will be at least until mid-2013find safe places to work, and ity serves as an “intellectual system, which does not per- before an assessment can beprevents them from having hub” by putting all the stages ceive the virus as a threat.” made, and a little longer tothe same protections as other of vaccine research and However, Nabel offered evaluate more mature data,workers and other citizens.” development under one roof. some perspective on the Nabel said. Even if a vaccine38 SE P TE MB E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 41. were discovered today, itwould take at least four yearsof additional testing and eval-uation before it could becomepublicly available.The ClinicalResearch CenterNext stop on the tour wasthe Mark O. Hatfield ClinicalResearch Center, a hospitalwhere 1,500 clinical trials fora variety of illnesses (includ-ing HIV/AIDS) are conducted.Opened in 2005, the HatfieldClinical Research Center isconnected to the WarrenGrant Magnuson ClinicalCenter, built in 1953, to formthe largest hospital in the U.S. have hep C out of 314 million Clinical Care: Dr. Henry Masur (above) introduces Senoradedicated to clinical research. Americans. While the current Mitchell, a medical clerk who has been with the Hatfield Clinical The Clinical Research standard of care for hepatitis Research Center’s HIV clinic since 1987. “I love my work,” MitchellCenter has spawned numer- C can sometimes be difficult said. “I get to make a difference every day.”ous treatments, from the to tolerate and only helps tofirst pediatric chemotherapy clear the virus in about one- Modest accommodations: You might expect that anto development of AZT, third to one-half of patients, examination room in the most prominent medical researchthe first anti-HIV drug. The recent advances have raised hospital in the country, if not the world, would look better thancenter houses an HIV clinic the cure rate to 75% and this. But Masur noted that taxpayers pay for NIH facilities, so thethat treats 500 patients, only higher. Masur said advances exam room looks the same as at any other doctor’s or two of whom are ever in treatment look even morein-patients. promising, comparing them to Dr. Henry Masur is the the advent of protease inhibi-research center’s Director of tors and combination therapyCritical Care Medicine, but has for HIV that came in 1995.focused the major part of his As people are now livingcareer on HIV and its associ- longer with HIV, Masur saidated complications. Although the research center is begin-a research institution, Masur ning to look at aging andsaid the clinic recognizes the other complications. “We’llimportance of keeping HIV- soon be examining neuro-positive patients connected cognitive issues,” he care. That’s why while “Beyond anecdotally, does ithalf the clinic’s nursing staff happen, and if so, what canis in research, the other half we do to reverse it?”of the nurses are also case “Knowledge is bi-direc-managers. tional,” Masur said. “What Hepatitis C is a major con- we learn in the lab will helpcern for people who are HIV- patients. But there is a lot wepositive, Masur said. There can learn from patients andare 3–5 million people who put to use.”P osi t i ve S E P T E MB E R+ OC TOB E R 2012 39
  • 42. Scenesfroma weekthat waswords & imagesby Rick GuascoB eyond the headline- making sessions of the International AIDSConference, there was much tosee and do inside and away fromWashington, D.C.’s conventioncenter. “What would an AIDSconference be without a littleprotesting?” said an unflappableSecretary of State Hilary Clintonas a small group of demonstratorsrose and chanted when she tookthe stage on opening day. During a panel discussionaddressing the efficiency ofoverseas anti-AIDS efforts, BillGates spoke candidly: “Theamount of money we have [now]is not enough to treat everyone.We’re in a period of incredibleuncertainty about how much thisfunding will stay strong. Even theuncertainty creates instability inhow the investment ahead willbe made. The voices of the AIDScommunity are going to have tobe louder than ever.” The week of the conferenceoffered opportunities to honorthe fallen and plea for the living.Visitors to the AIDS MemorialQuilt, displayed on the Mall, couldnot only see the panels, but alsorecite the names of those memo-rialized by the Quilt. In the streets, approximately1,000 marchers took their mes-sages to the White House.Discordant voices—demonstratingfor sex workers’ rights, againstWall Street, opposing HIV crimi-nalization laws—were united byone refrain, “cure AIDS now.”40 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 43. The mirror hasTwo FacesA personal account of using facial filler for lipoatrophyBy Jeff BerryE ver since it first began appearing with stigmatizing effects, as well as my experi- ence using a facial filler, Sculptra (known some regularity in people with HIV in the mid 1990’s, then as New-Fill) back in 2001. The results lipoatrophy has earned its well deserved reputation I saw in 2001 were only moderate, and as the Scarlet Letter of HIV, also known as “the look.” disappeared within about six months to a year, mainly due to the fact that I onlyLipoatrophy is the loss of subcutaneous fat under the skin, most received two treatments because that wasnotably in the face, but also in the butt, arms, and legs, and is all that I could afford.thought to be part of a larger syndrome called lipodystrophy, I n the fall of last year, Iwhich is the redistribution of fat in the body and can include buf- decided to revisit the idea of receiv-falo hump, enlarged breasts, and visceral fat in the abdomen. ing another round of facial filler treatments, and I went to see Dr. Dan It can sometimes be extremely disfigur- countries, although d4T continues to fall Berger of Northstar Medical Center ining, and almost always causes some level out of favor with providers and is used less Chicago for a consultation. Dr. Berger, whoof emotional distress, even depression, and less as more and newer drugs become also writes for Positively Aware, andand oftentimes self-imposed isolation in available in those regions. has over 12 years of experience providingthose who suffer from its stigmatizing For those who have been treated with Sculptra, recommended that I undergoeffects. It can also affect adherence to HIV some of these older, more toxic drugs five or six “sessions” due to the level ofmedications, and deter people from start- (when that was all that was available), facial lipoatrophy that I had. Facial lipoat-ing treatment in the first place. many have developed the sunken cheeks, rophy is graded on a scale of 1 to 5, with 1 The cause of lipoatrophy has been veiny arms and legs, and loss of fat in the being mild, and 5 being severe—mine waslinked to certain HIV medications, most butt to the point where it is uncomfortable severe, between grade 4 and 5. Duringnotably d4T (Zerit, stavudine) and to a less- to sit for more than a short period of time. each session, I was to receive injections ofer extent AZT (Retrovir, zidovudine) and Once you discontinue taking a drug like two vials, or one “kit” of Sculptra, one vialddI (Videx, didanosine); other HIV meds, d4T, you can sometimes stop the lipoat- for each side of my face.including some protease inhibitors; and it rophy from progressing any further, but it Sculptra, or injectable poly-L-lactichas also been linked to HIV itself. D4T is can take a long time to see any reversal of acid, is one of only two FDA approvedrarely prescribed in the U.S. anymore, but is its effects, if ever, so some people will turn treatments in the U.S. for HIV-associatedstill widely used in many developing coun- to using facial fillers to replace the fat in facial lipoatrophy, the other beingtries due to its availability and low cost. the face that has been lost. Radiesse. Both of these injectables workWhile we don’t see as many new cases of I have written several articles in the by being absorbed into the body andlipoatrophy here in the U.S. with those who past, for both Positively Aware and stimulating the growth of the body’s ownhave since initiated therapy using newer, about my experiences collagen, so they are not permanent fill-and less-toxic antiretrovirals, it is still preva- dealing with the physical and emotional ers. There are other fillers available (seelent among those using d4T in developing aspects of having lipoatrophy and its table, page 43) that are also used forP osi t i ve S E P T E MB E R+ OC TOB E R 201 2 41
  • 44. FACE ON: Berry before his initial treatment, and three months after the sixth and last session.facial lipoatrophy, but they are permanent the high cost and lack of coverage by most during any injection session. Re-evaluateand can sometimes cause serious side plans, and the great need of those who the patient no sooner than two weeks aftereffects and allergic reactions (as can both have this condition, the manufacturer cre- the injection session to determine if addi-Sculptra and Radiesse). Only one is FDA ated a patient assistance program (PAP) tional correction is needed.”approved (Silikon 1000) and none are for people with HIV that assists in help- Each session only takes around 40-45approved for use in HIV. Anecdotally, I’ve ing to pay for Sculptra. However, a new minutes, and it would begin with Dr.heard of people who have used them and company (Valeant) recently took over the Berger marking my face with a whiteare pleased with their results, but person- PAP, and it now only covers those with up pencil to guide him while injecting theally I did not want to use something that to $61,940 in annual income, and provides Sculptra. Starting with ice packs on mywas going to be permanent. just two kits plus one follow up kit after a face to minimize the swelling, and then I felt comfortable using Sculptra because two-year period. Under the PAP Sculptra is a local anesthetic to numb my face, heI had used it before and I already knew what free for those with an annual income less would begin injecting the filler into dif-to expect, but also because I would be get- than 200% of the Federal Povery Level ferent areas of my face, using his handsting six treatments instead of two, so I was ($22,340 for an individual, slightly higher to help “move” the filler into place once ithoping to experience better results this time based on family size and in Alaska and was injected. Even with the local anesthet-around. Plus, as Dr. Berger explained it, after Hawaii), and then on a sliding scale above ic, I experienced a good deal of discomfortgetting six treatments, my face would never this amount and up to $61,940. The staff when the needles went in and he tunneled,go back to the way it was before receiving at Northstar was very helpful in getting especially during the first couple of ses-Sculptra, and I would only require a “touch- me set up with the PAP, and in November sions when there was little fat in my faceup” session once a year. of 2011 I received my first treatment. for him to work with. But the discomfort The cost of Sculptra is expensive, run- was only temporary, and when the session Ining about $1,700 for one kit (two vials), t is very important that the was over, I was left with some temporaryor $850 per 367.5 mg vial, which also physician who is performing the pro- swelling, a few marks, and on occasion, “After” Photo: Chris Knightincludes the cost for the session—doc- cedure be trained specifically in the some slight bruising, but the swelling wenttor, time, and procedure. Most insurance use of Sculptra and how to properly down in a few hours and any marks orcompanies still consider its use to be a inject it, which requires a certain threading, bruising were gone within a day or two.cosmetic treatment and are therefore or tunneling, technique. According to the Following each session, and accordinglikely to refuse to cover the drug as well as package label, “during the first injection to the package label, I was to “massage inthe procedure. However, if you are initially session with Sculptra, only a limited cor- a circular fashion the treated areas for fivedenied, you should appeal and see if you rection should be made. The contour defi- minutes, five times per day for five days,”can get them to recognize it as a medical ciency should be under-corrected, never in an effort to stimulate collagen growthnecessity (which it really is). Recognizing fully corrected or overcorrected (overfilled) and “even out” the facial filler under my42 SE P TE MB E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 45. FACE OFF: Commonly used options for HIV-related facial lipoatrophy Product Type/Sessions Approved? Cost Sculptra Non-permanent; FDA approved. Patient Assistance for product only Poly-L-lactic acid 3–7 or more sessions (under $61,940 yearly income): needed. sculpt1039.pdf. Labor cost average $400 per session. Full price: $1,100 per session for product. Radiesse Non-permanent; FDA approved. Patient Assistance available: www. Calcium hydroxylapatite 2–3 or more sessions (CaHA) microspheres needed. Patient-access-program/ Full price: $1,200 per session. Silikon 1000 Permanent; Off-label use; FDA approved for No Patient Assistance Program.SOURCE: FACIALWASTING.ORG Microdroplets 4–6 or more sessions intraocular injections to treat $400–800 per session, depending on needed. CMV-related retinal detachment. the physician. Bioalcamid Permanent; Not FDA approved. Available in $4,500 average total. Two sessions. Polyalkylimide gel 1–2 sessions needed. Canada, Mexico, and Europe. Infections reported after 3–4 years. PMMA Permanent; Not FDA approved. Available in $2,000 average cost for total recon- Polymethylmethacrylate 1–2 sessions needed. Mexico and Brazil. American ver- struction. Patient assistance in Tijuana: sion Artefil is too expensive for the amount required. skin. I went back for five more sessions, Of course, nothing is perfect, and there I realize that I am very lucky to have a one every four weeks. are side effects associated with Sculptra. decent-paying job that has afforded me the The most common side effects reported ability to benefit from this treatment, and P atients are advised that in studies are bruising, swelling, discom- that many others are not as fortunate. I also after the initial treatment and fort, and rash, but these typically resolve realize that even though the HIV treatments within a week the effects will within a few days to a few weeks. There is available today are much less likely to completely disappear, and the a “device-related adverse event” called an cause facial lipoatrophy (if at all), the fear contour of the face returns to how it was injection site subcutaneous papule, which of developing facial lipoatrophy still may before. With each subsequent session, is a small lump or bump under the skin, the deter some people from ever starting treat- however, you begin to see the cumulative onset of which can occur anywhere from ment, or may cause those who are on treat- benefit of each successive treatment, and a few weeks to a few years afterward. I ment to be less than fully adherent to their the effects are more noticeable and last experienced several of these lumps, one regimen. While Medicare finally agreed to longer. By the third or fourth treatment, I under my left eye, and two under my cover the procedure a few years ago, the was really looking more and more like my right temple (sometimes if you get these amount that they reimburse is well below old self, and couldn’t wait for each follow- papules you can feel them under your what providers charge. That is why I plan to ing treatment, pain or no pain! skin, but they are barely noticeable—other continue to advocate for insurance compa- Treatment advocate Nelson Vergel times they can be more visible). There are nies, Medicare, and Medicaid to cover this warns that not everyone experiences the also more serious adverse events that can procedure at a reasonable amount, much same level of results. “Some people in my potentially occur, so be sure to read the in the same way that breast reconstruction online discussion group, especially those full package label. is provided to women with breast cancer with moderate to more advanced cases of who have undergone a mastectomy. The I facial lipoatrophy, have complained of poor n the end, for me the few benefit of these treatments is vital to the response with Sculptra after spending a few small lumps, the cost of treatment, psychological well-being and quality of life thousand dollars for several sessions that and the pain were all a small price to for so many people living with HIV who are did not end up restoring their faces.” Vergel, pay for what it has ultimately done for affected by this condition. founder of and pozhealth my self-esteem. I feel better about myself at, says that some of overall, because I look healthier. The effect Go to for more them end up getting silicone microdroplets for me was subtle, most people didn’t really information. For a list of providers trained in the U.S. or flying to Mexico to get perma- notice or say anything, other than “you look in the use of Sculptra, visit www.sculptra- nent options like PMMA (see table, above). rested” or “you look really great!” P osi t i ve S E P T E MB E R+ OC TOB E R 2012 43
  • 46. Ask the HIV specialist Helen C. Koenig, MD, MPH Safe sex is for seniors, too Q: I am a 65-year-old woman.Search I lost my husband six years ago andfor an HIV have finally decided to enter the dat- n Specialist™ ing world again. My friends have con-Finding an HIV vinced me to go on a cruise especially for single seniors,Specialist™ but my daughter is giving me all kinds of warningsis easy with about sexually transmitted diseases and HIV. HIV didn’tAAHIVM’s even exist back when I first became sexually active.Referral Link: Seriously, how great is my risk of contracting diseases? After all, we are all going to be senior citizensEnter your ZIP and I’m not going on this cruise intending to “hook up”code on the (as they say). Is all this safe sex stuff really necessary?home page, A:and click As you head for the sun, 3,500 women over age 45 were diagnosed withon the “Go” the all-you-can-eat buffets, and the AIDS in 2009. People over the age of 50 nowbutton for cruise festivities, don’t forget to pack account for 15% of new HIV/AIDS diagnoses, anda list of HIV some condoms with your sun block. over 35% of all deaths from AIDS.Specialists™ While the risk of bringing home HIV or another sexu-near you. ally transmitted infection (STI) is not high, it’s not zero n The highest percentage of trichomoniasis (a parasitic either. You are joining a growing population of women infection, considered the most common curable STI) who are sexually active in their 60s and 70s and, unfor- is now actually in women over 50. Also on the menu tunately seeing a higher rate of STIs than ever before. are syphilis, gonorrhea, chlamydia, hepatitis B and C, What really is your risk of acquiring an STI? This herpes, and human papilloma virus. depends entirely on the partner or partners with whom you choose to be sexually active, what type of sex you n Postmenopausal women are at a particularly high choose to have (oral, vaginal, or anal) and whether risk of acquiring HIV and other STIs because the you choose to use protection or not. You have no way vaginal wall is thinner as a result of lower estrogen of knowing the sexual history of the men you’ll meet levels and the immune system is not as strong as it or their risk of having an STI. Studies have shown that used to be. even doctors, after taking a complete sexual history in a medical setting, are still terrible at predicting whether You can’t control the risk of STIs in your partners, Illustration © karlkotasinc someone has HIV. Your prospective partners may but you can control the risk of bringing one home not know they have STIs, as many can be present for yourself with correct condom use. Perhaps you think it’s months or years without symptoms, including HIV. “the man’s job” to come prepared with protection, but Women who have been in a monogamous relation- I encourage you to bring your own as backup! Chances ship for the last 20 or 30 years, or for whom sex hasn’t are, the condom colors, flavors, and textures out there been an issue, may find it difficult to think about buying have changed a bit since you last looked. Lubricants and asking their partner to use condoms. But here are now also come in wider varieties and are important some good reasons to brave that aisle at the drug store if you experience vaginal dryness, both for your own before you hit the high seas, as well as empowering comfort and to prevent condoms from tearing. So pack yourself enough to make sure they’re used: some protection and enjoy the festivities ahead!44 SEP TE M B E R +O C TO BER 201 2 P os i t i v e lyAware .com
  • 47. Wholistic picturE Sue Saltmarsh Battle of the sexes? With all the evidence that there is indeed and the problem is not in getting We need to a “war on women” being waged by “conservatives,” people to go against those natu- stop put- ral leanings, but in the rest of us ting each it’s hard not to feel a “feministic” response. I am not a accepting whatever choices they other in neat feminist. But I am also not in favor of any woman being make. As a former girl, I can tell you little boxes. forced to have a child she cannot support financially, that there is nothing on Earth that Regardless could’ve induced me to become a of the com- emotionally, physically, or spiritually, just as no man scientist, engineer, or mathemati- position of should be forced into fatherhood that he doesn’t want cian. Why should I have been forced our chro- and can’t do well. into a field I had no interest in? Why mosomes, should any boy be forced to take we are all But I digress. Some feminists have been heard to Home Ec over Shop, to play the flute instead of football, human. say that no man would be here without his mother’s or vice versa against his own interest? body having created him. I have to wonder how they Throughout history, there have been courageous could have missed the fact that a man (the sperm had activists of both sexes fighting for things that were to come from one of them, after all) was also involved good for everybody. Without Elizabeth Cady Stanton in that creation. But then, I thought, couldn’t such and Susan B. Anthony, the issue of women voting might biological criteria be used to argue the case for the never have come to the forefront, but it took 56 men in opposite side of every agenda? Women have testos- Congress to pass the amendment that gave women the terone too and yet the number of female-only causes right to vote. Rosa Parks and Martin Luther King were far outweighs male-only ones. At this stage of human both crucial to the civil rights movement, but it was history, I doubt that there is any black or white person Lyndon Johnson, a white guy from Texas, who made it who doesn’t carry a gene inherited from an ancestor of the law of the land. the other color and yet we have racism from both sides. We need to stop putting each other in neat little And, as I’ve said before, aren’t people who develop boxes. People—every sex, every race, every religion, cancer after years of chain smoking just as deserving of every size, every age, with every illness—have to decide the medical care and treatment they need to survive as for themselves what’s worth fighting for in this lifetime. people who acquire HIV after years of unprotected sex Since 2009, we’ve had a lot of people, many who call with multiple partners? themselves Christians and/or Republicans, deciding When feminists angrily accuse me of misogyny, I that the only thing worth fighting for is whatever goes stand by my belief that BOTH sexes are as valuable and against everyone who doesn’t look, believe, or act as worthy of living as the other. And yet, if a man pub- like them. But now we also have more, including some lished a calendar called “How is a jar of Vaseline better Christians/Republicans, waking up, shaking off compla- than a woman?” I’ve no doubt he would be verbally cas- cency, and standing together in all their glorious variet- trated by the very women who publish “How is a cucum- ies to fight for justice, equality, and the things that are ber better than a man?” And, by the way, the word for best for the Whole. the female equivalent of misogyny, misandry, rarely sees “Men should be advocates for all and not just their the light of day, though both obviously exist in full force. own gender!” feminists stridently shout. Shouldn’t I have frequently been amazed by the number of women? Shouldn’t we all? Regardless of the composi- commercials on PBS and other progressive media tion of our chromosomes, we are all human. None of usPhoto: CHeryl Mann sources that tout the urgent need to get more girls to would be here without the contributions of both male become scientists, engineers, and mathematicians. and female. So I propose we stop being “feminists” or What about the boys who are truly, innately passionate “masculinists” (See? not even a word for it!) and do our about math and science? And where are the commer- best to become humanists. cials urging more boys to become nurses, teachers, and dancers? Fact is that each sex has natural tendencies Breathe deep. Live Long. P osi t i ve S E P T E MB E R+ OC TOB E R 2012 45
  • 48. On September 21, take your best shot against HIV.A Day with hivWhether we’re positive or negative, we are all affected by HIV. Take your best shotagainst HIV/AIDS—take part in A Day with HIV, the HIV awareness and anti-stigmacampaign presented by Positively Aware. On Sept. 21, use your smartphone or digitalcamera and take a snapshot of a moment of your life. Upload your picture and story or email them to Selectpictures will appear in a special section of the November+Decemberissue of Positively Aware. Additional pictures will be featured Get in the picture.