TABLE OF CONTENTSDid You Just Test HIV Positive? ......................................................3STEP 1: Getting Sm...
“I try to let people know    STEP 1                                                                      that HIV is a pro...
Even though the facts about HIV are well known and                Johnson, who is a multimillionaire, would be cured. Yes,...
“Being diagnosed HIV    STEP 2                                                                                    positive...
STEP 3     FINDING QUALITY HEALTH CARE     Even if you don’t need treatment yet, you’ll still need to find            Ever...
P R O G R A M S T O H E L P YO U PAY F O R D O C T O R V I S I T S, L A B T E S T S,                                      ...
“We know that some black     STEP 4                                                                         people bring m...
fewer than 50 copies/mL of HIV, your health care provider will tell you                If you are seeing other health care...
“When I was first diagnosed,     STEP 5                                                                       I thought I ...
.     HIV medicine around meals or take it with or without certain foods. You’ll                  BLACK VERSUS WHITE:     ...
“I needed a good three     STEP 6                                                                    years to actively pro...
STEP 7     DEALING WITH HIV TREATMENT     You’ve made the commitment to begin treatment and settled                      H...
“HIV changed me.     STEP 8                                                                         It taught me to genuin...
STEP 9     PUTTING IT ALL TOGETHER     In this booklet, we’ve talked about some of the most                     HIV medica...
“The best thing since                                                                        positive, stigma and denial a...
“You’re not alone! There aremore people than you thinkout there with HIV!”                                                ...
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  1. 1. TABLE OF CONTENTSDid You Just Test HIV Positive? ......................................................3STEP 1: Getting Smart About HIV ........................................................4STEP 2: Getting Connected to Support................................................8STEP 3: Finding Quality Health Care ....................................................10 DID YOU JUST TEST HIV POSITIVE YOU’RE NOT ALONE. ? HIV-positive folks out there ready We don’t want to make light of to provide information, support,STEP 4: Learning About HIV Treatment ................................................14 what you’re going through. advice and many other resources.STEP 5: Preparing to Start HIV Treatment ............................................18 Getting an HIV diagnosis may First, let’s get something straight:STEP 6: Choosing the Right HIV Treatment..........................................22 feel like the worst thing that There’s a whole lot of fear,STEP 7: Dealing With HIV Treatment ....................................................24 has ever happened to you. ignorance and prejudice in theSTEP 8: Gathering Strength From Others ............................................26 world about HIV and HIV-positive But pay attention to this: There isSTEP 9: Putting It All Together ..............................................................28 life after testing positive. One people. This may cause you to million Americans are now living feel guilty, depressed or angry in with HIV, and one out of every ways that can be hazardous toConsult your doctor! The only purpose discuss your options with a health two people newly diagnosed your health. That’s why it’s vital toof this booklet is to educate and to care provider who specializes in with HIV is African American. know the facts. Read on to learninform. It is no substitute for treating HIV. more about HIV—and to discoverprofessional care by a doctor or other We would like to thank Bethsheba So, take a deep breath. Nomedical professionals. Body Health some helpful steps you can takeResources Foundation neither Johnson, MSN, CNS, GNP-BC, for matter how alone and depressed generously providing a medical review to live fully with HIV.endorses nor opposes any particular of this booklet. Thanks also to Keith you may feel right now, knowtreatment option mentioned in thisbooklet. Instead, we encourage you to Green for his thorough read. that there is a big community of “Hold on! Don’t give up! YouFunding for this booklet comes in part from educational grants provided byBristol-Myers Squibb Company and GlaxoSmithKline. can still live a good life! Having HIV is not the end— having no hope is.”Copyright © 2006 Body Health Resources Foundation. All rights reserved. Joyce McDonald, age 55, diagnosed in 1995
  2. 2. “I try to let people know STEP 1 that HIV is a process— GETTING SMART ABOUT HIV a growing process.” Once you find out that you are HIV positive, one of the The stronger your immune system, most important things you can do is get informed. the longer it can keep up the fight against HIV. If you treat your T H E FA C T S A B O U T H I V: There are hundreds of different kinds of immune system well—especially viruses in the world. Some are just annoying, like the viruses that cause by reducing stress, avoiding “I wasn’t always colds. Others, like HIV or the hepatitis C virus, can cause serious, even alcohol and not smoking cigarettes life-threatening, illnesses. By taking care of your body—which includes this strong. I or using recreational drugs—your taking HIV medications that can control HIV—you can prevent many wasn’t always this immune system may be able to HIV-related illnesses. vocal about who keep HIV in check for years. W H AT H I V D O E S T O YO U R B O DY: HIV invades your body because it and what I am. But even if you treat your body needs a living organism to reproduce. The reason HIV is dangerous is There was a point well, HIV can still eventually get that it sets up shop in your immune system, your body’s natural where I sat in my the upper hand. Then it’s time to defense against disease. It especially targets your “CD4 cells,” also call in the big guns: HIV room and I cried called “T cells.” HIV takes command of these cells—like a pirate taking medications. all day... Only you over a ship—and uses them to reproduce itself, creating millions of new can determine how viruses every day. We’ll talk more about CD4 counts and HIV medications later in the fast or how slow Unfortunately, these CD4 cells are the very cells that your body uses to booklet. First let’s dispel some you go.” fight infections, so when HIV takes them over, it weakens your immune myths about HIV. — Shelton Jackson, age 28, system. diagnosed in 19984 5
  3. 3. Even though the facts about HIV are well known and Johnson, who is a multimillionaire, would be cured. Yes, Magic looks agreed upon by every HIV specialist and every single fantastic and—even with HIV—is healthier than many HIV-negativeMYTH | REALITY HIV/AIDS organization in the United States, there remains Americans. But that’s because he takes care of himself and is on HIV a lot of misinformation about HIV. treatment—the exact same treatment available to everyone with HIV in the United States. Magic’s wife, Cookie, has admitted that she was MYTH: H I V C A N B E T R A N S M I T T E D C A S UA L LY. wrong to say that he was “cured.” She meant that the medications he REALITY: There are no documented cases of HIV was taking had gotten rid of almost all the virus in his body, but he still being transmitted casually through handshakes, hugging, remains HIV positive. sharing cups, dinner plates or using the same bathrooms. M Y T H : TA K I N G H I V M E D I C AT I O N S M E A N S YO U D O N ’ T H AV E T O PRACTICE SAFER SEX. MYTH: H I V D O E S N ’ T C AU S E A I D S. R E A L I T Y: The drugs can get rid of nearly all the virus in your blood. REALITY: After 25 years, there is a mountain of proof that Although this will HIV causes AIDS. Everyone who ever got sick decrease the risk or died from AIDS had one thing in common: They “A lot of people spend way of infection to had HIV. too much energy trying to your sex partners, MYTH: H I V - P O S I T I V E W O M E N S H O U L D N O T G E T figure out where this virus your blood, P R E G N A N T. came from. I always go semen or vaginal back to the analogy: If you fluids still contain REALITY: More and more women with HIV are giving birth own a house, and the house is on fire, HIV. This means to HIV-negative babies. By taking the right HIV drugs you’re not going to worry at that that protected while pregnant—especially during childbirth—an HIV- moment about how the fire started. sex is the rule positive woman can reduce the risk of passing the virus You’ll think about how you’re going to to keep your to her baby to 1 or 2 percent. HIV treatment can help an get the heck out of there! Ill tell you partner safe. HIV-positive mother and her child live long, healthy Plus, you can lives together. right now, when I wasnt taking get in legal medications, or when the medications MYTH: T H E R E ’ S A C U R E F O R H I V, B U T O N LY T H E trouble if you werent working, I got sick.... Now Im R I C H H AV E I T. don’t tell your undetectable because of taking partner about medication.” REALITY: If rich people had a cure for HIV or AIDS, Magic your HIV. Greg Braxton, age 50, diagnosed in 1994 6 7
  4. 4. “Being diagnosed HIV STEP 2 positive is not the end of the GETTING CONNECTED TO SUPPORT world. It ’s the beginning of a brand-new world.” No matter how strong you might be, an HIV diagnosis is • HIV support groups something that nobody should face alone. Make sure you • Mental health and substance connect with the community of HIV-positive people. It’s one abuse counseling of the best steps you can take to begin to solve both the • Case managers who can connect “There ’ll be good emotional and practical problems of living with HIV. you to government aid you may days and bad. But need, such as Medicaid, disability Chicago native Greg Braxton is the perfect example of someone who insurance, medication assistance it ’s nothing you can’t successfully reached out and got the services he needed. An alcoholic • Expert information on HIV and handle, because if and a crack cocaine addict for 27 years, when he left drug treatment nutrition, fitness and other issues for the last time five years ago, he knew he needed to stay away from his old neighborhood. He found a place that offered day programs for • HIV treatment information and you ’ve gotten people with HIV and he applied for supportive housing. He said it was a adherence workshops to help through your life so far, you ’ve had those with taking HIV medications critical stepping-stone. “I doubt if I would have made it, if I had gone bad days already. All straight to independent living, because I wouldn’t have any support or • HIV prevention counseling, safe you have to do is dig sex workshops and free condoms any restraints. And I probably would have relapsed.” back there, find the Most big cities have several S TA RT B Y C O N TA C T I N G YO U R L O C A L H I V / A I D S O R G A N I Z AT I O N. strength to meet the HIV/AIDS organizations geared to Knowing when you need help is vital. An HIV/AIDS organization can be bad days and meet the needs of different a lifeline. Many organizations have case managers who can help you populations. For help in finding a celebrate the good move forward on many of your health care issues. You’ll find most or local organization, go online to days.” all of the following at HIV/AIDS organizations: or call the National HIV/AIDS — Marcya Owens, age 36, Hotline at 1-800-232-4636. diagnosed in 19948 9
  5. 5. STEP 3 FINDING QUALITY HEALTH CARE Even if you don’t need treatment yet, you’ll still need to find Every person living with HIV a medical professional experienced in treating people with deserves the best care possible, HIV. Regular checkups with an HIV health care provider are regardless of ability to pay. The extremely important, even when you don’t feel sick. good news is, not only do you deserve the best care, you can You’ll need to find a health care provider (this could be a physician, nurse practitioner or physician assistant) with special training in HIV get it. “The more who has treated 20 or more people with HIV in the past two years. There’s a nationwide network of knowledge HIV- You’ll want someone who stays on top of the newest information services, programs and resources positive people have, about HIV medications, tests and other issues. to help people with HIV remain the better they are able to consider the healthy—even people who have However, it’s just as important to choose someone you like, someone pros and cons of no insurance or low incomes. you feel you can trust and be open with. This means you’ll need to find each decision. I someone you can be honest with about sensitive issues—everything Many big cities have state-of-the- encourage questions from sex, drugs and alcohol use to missing doses of HIV meds. art HIV clinics for people who Your health care provider is your partner in fighting the virus. She or have no insurance. When you from my patients because I feel it is he will be your ally for a long time, helping you deal with the ups and enroll in these clinics, you get important to their downs of HIV disease, the drugs that control the virus, the side effects medical care from a top team of care.” that may come with the drugs, and many other health issues. You need HIV health care providers as well — Bethsheba Johnson, to be completely open with your health care provider in order for him or as counseling and support for her to do their job—which is to help you stay healthy. mental health, substance abuse Nurse Practitioner at the Luck Care Center in Chicago10 11
  6. 6. P R O G R A M S T O H E L P YO U PAY F O R D O C T O R V I S I T S, L A B T E S T S, PROGRAMS TO HELP PRESCRIPTION DRUGS AND OTHER MEDICAL CARE: and other issues. You may be assigned to a case manager, who will become the person you • P r i v a t e H e a l t h I n s u r a n c e. If you have private health can turn to first for whatever help you need— coverage through your workplace, learn all you can about your plan’s such as figuring out which government coverage, especially its participating health care providers (doctors, programs can pay for your HIV medications hospitals and healthcare facilities). If your coverage is through an and HIV care. HMO (health maintenance organization), check out the list of in-plan doctors who specialize in HIV. To find a good local HIV specialist, call Live in a rural area? Getting the best HIV care your local HIV/AIDS organization and ask if they have a list of possible may mean traveling to the nearest city recommended local HIV doctors. Be sure also to get referrals from several times a year—an extra effort, but one any HIV-positive people you know. that will repay you with better health. • Medicaid. If you don’t have private health insurance, you may be For a list of HIV clinics near you, call the eligible for Medicaid—government health insurance for people with National HIV/AIDS Hotline at 1-800-232-4636. limited income or resources. Many HIV specialists accept Medicaid, An HIV clinic will give you better care than other so don’t hesitate to ask before making an appointment. types of health clinics or hospital emergency rooms, since it is staffed by HIV specialists and • M e d i c a r e. If you’re retired and over age 65, you’re eligible for this is equipped specifically to help people with HIV. government health insurance program. Some people with HIV who are under 65 may also qualify. Many HIV specialists accept Medicare. “What makes the doctor is • A D A P ( A I D S D r u g A s s i s t a n c e P r o g r a m s ) . This not their color, but the federally funded program is available in every U.S. state and provides choices they’re making free HIV medications to low-income people who don’t have health and how committed they insurance. To find out if you qualify for ADAP and to learn how to are to the patient.” enroll, call the National HIV/AIDS Hotline at 1- 800-232-4636. — Marcya Owens, age 36, diagnosed in 199412 13
  7. 7. “We know that some black STEP 4 people bring mistrust of the LEARNING ABOUT HIV TREATMENT medical system into their clinic visits…” Now that you have figured out where you can get good HIV medications before your CD4 care, one of the first questions you’re likely to have is: count hits 200. WHEN IS IT TIME TO START TAKING HIV MEDICATIONS? T H E V I R A L L O A D T E S T. Viral load tests provide an estimate of how Your HIV-positive test result won’t tell you the answer. All it tells you is much HIV is circulating in your that you’ve been infected with HIV. Some people can live many years blood. Generally speaking, your “It’s my job, as a provider, to give with HIV before they need to take medications to control it. viral load is not considered as However, every person who tests HIV positive should immediately critical as your CD4 count in people information have two additional tests: a CD4 count and a viral load test. These determining the health of your and to earn their trust, but it really tests are the critical measuring tools you and your doctor will use to immune system. However, once helps people when see what the virus is doing in (and to) your body. you begin HIV treatment, it is a they enhance their good measure of how well your T H E C D 4 C O U N T T E S T. This test, also known as a “T-cell count,” HIV medications are working. own learning and gives an indication of the number of CD4 cells in your bloodstream. bring that into the The more CD4 cells you have, the stronger your immune system is. A viral load test measures the clinic visits too.” After living with HIV for a while (if you dont take medications), the amount of HIV in a small amount — Dr. Adaora Adimora, number of CD4 cells you have will usually fall. This is a sign that your (milliliter or mL) of your blood. immune system is being weakened. A normal CD4 count for someone Current viral load tests can detect physician at University of without HIV is usually between 500 and 1,600. Experts generally agree as few as 50 copies of HIV per North Carolina-Chapel Hill that when your CD4 count goes below 200, you’re at a high risk for milliliter of blood. When your viral developing potentially dangerous illnesses, so you should begin taking load test indicates that you have14 15
  8. 8. fewer than 50 copies/mL of HIV, your health care provider will tell you If you are seeing other health care providers, besides your HIV that your viral load is "below the limit of detection," or "undetectable." specialist, be sure that they are all in contact. This does not mean that you no longer have HIV in your body. Even someone who has an "undetectable" viral load can transmit HIV to someone else. However, an “undetectable” viral load means that your medications are doing an excellent job of keeping HIV in check. Current Guidelines Recommend: D O H I V M E D S W O R K D I F F E R E N T LY I N A F R I C A N A M E R I C A N S ? If your CD4 count is 350 or above, there’s usually Generally, whether a person is black or white, HIV meds appear to work no need to start medications unless your viral the same way. The real problem, experts say, may be that African load is 100,000 or higher or you have serious Americans are already at a higher risk for some health problems that symptoms. HIV meds can cause or worsen. • If your CD4 count is between 200 and 349, you should seriously consider starting HIV T H E S E H E A LT H P R O B L E M S I N C L U D E : treatment. High blood pressure (also called hypertension) • If your CD4 count is below 200, it’s critical to High cholesterol begin HIV treatment immediately in order to avoid serious illnesses. Anemia (a low blood count, which can make you feel tired) Diabetes Generally, every three to six months you should visit your health care provider for a checkup and a Hepatitis C (which, over time, can cause liver damage) new round of CD4 count and viral load tests. Kidney disease Based on your test results, you and your provider DEALING WITH HIV AND OTHER ILLNESSES? will have a clear picture of how HIV is progressing Be sure to stay on top of HIV as well as any other infections or in your body, as well as when you should start or illnesses. If you are infected, for example, with HIV and hepatitis change HIV medications. B or C, your physician may refer you to a liver specialist who also specializes in HIV.16 17
  9. 9. “When I was first diagnosed, STEP 5 I thought I needed to live as if I were about to die.” PREPARING TO START HIV TREATMENT Once your health care provider recommends that you begin This may cause your first treatment, it’s important to consider how treatment will combination of medications to change your life. Are you ready mentally, as well as physically, fail. If this happens, it can get to take medications every day? Remember: Most HIV harder and harder to keep HIV specialists say that you have to take your medications as under control with each new drug “I dropped out of prescribed, at least 95 percent of the time, to keep HIV under combination. school, focused control and prevent it from becoming “resistant.” HIV that is So its crucial to identify a resistant can make your medications less effective. combination you can stick to, more on working This means you have to be certain that taking your medications will before you start treatment. Here full-time and become a central part of your daily life. Be honest with your HIV are some things to consider: partying. I was just specialist about anything that may make it more difficult for you to kind of existing. And then I got to take all of your medications on time. If you have a case manager or YO U R M E D I C AT I O N S C H E D U L E a point where I a counselor, talk with them about this important issue as well. SHOULDN’T BE TOO COMPLEX. realized there were One thing is certain: Taking Without a doubt, the commitment to taking HIV medications will be medications daily will change challenging. However, you have a good chance of keeping HIV under your life. Suddenly, youll have medications control with the very first combination of medications that works for you. new responsibilities. Youll always available that could help me live If this combination successfully controls your HIV, and if you take each have to be aware of the time, longer, and I just and every pill prescribed, you may not have to change medications for your schedule and changes in started to change a long time. your routine. In some cases, you my whole outlook.” What if you aren’t always able to take all your medications on time? may have to schedule taking your — Keith Green, age 30,18 19 diagnosed in 1994
  10. 10. . HIV medicine around meals or take it with or without certain foods. You’ll BLACK VERSUS WHITE: have to remember to take your pills with you when you go on vacation, ARE HIV MEDICATION SIDE EFFECTS DIFFERENT? go away for the weekend or go out at night. Even if you are depressed Researchers are still hard at work learning how the side effects or busy, you will still have to take your medications as prescribed every of HIV medications can differ in African Americans. Here’s what single day. So, before you begin HIV treatment, you must ask yourself: they have found out so far: "Am I really ready?" African Americans seem to be a bit more likely than other P L A N H O W YO U W I L L D E A L W I T H S I D E E F F E C T S I F T H E Y O C C U R . people to experience side effects from the HIV medication All medications can have potential side effects—even aspirin. Not Sustiva, which can cause sleeping problems and wild everyone experiences side effects from HIV medications, which can dreams. However, “studies suggest that this is so in only range from mild to severe. Because you really want to give this first 20 percent of black people,” says Dr. Pablo Tebas, an combination your best shot, talk to your doctor and read about the HIV researcher at the University of Pennsylvania. possible side effects of the medications you are thinking of taking. This can help you not only plan how to manage side effects if they arise, Sometimes, being African American can offer protection but to choose medications whose possible side effects you can manage. from some of the side effects HIV meds are known to cause. One study found that African Americans on HIV YO U R S U R R O U N D I N G S A N D YO U R M E N TA L H E A LT H A R E C R I T I C A L . treatment were less likely to develop high cholesterol If you are feeling depressed, using recreational drugs or living on a and high triglycerides (potential heart disease risks) than friends couch, it may be unrealistic to assume youll be able to take all HIV-positive people of other races. your medications all the time. Its also a good idea to get some support. This way it will be easier for you to follow a strict treatment plan. It helps In addition, when African Americans take a medication a lot to have friends, family, a support group or a therapist you can rely called Ziagen, because of something in their genes, they on while you are on a treatment regimen—especially at the beginning seem less likely to experience an allergic reaction. when you are still adjusting. (Ziagen is also found in two other HIV medications: Epzicom and Trizivir.)20 21
  11. 11. “I needed a good three STEP 6 years to actively process CHOOSING THE RIGHT HIV TREATMENT the diagnosis.” Doctors have not yet discovered a single combination of HIV medications: HIV medications that’s best for everyone. Each combination NRTIs (nucleoside reverse has its advantages and disadvantages. The U.S. transcriptase inhibitors) government issues regularly updated HIV treatment NNRTIs (non-nucleoside guidelines for health care professionals. As of October reverse transcriptase inhibitors) 2006, the guidelines made the following HIV treatment “Actively processing a diagnosis means PIs (protease inhibitors) recommendations for people who are starting on their finding a good first HIV treatment combination: Fusion inhibitors You and your provider will consider therapist, joining a Sustiva plus either Combivir or Truvada support group, or many issues before deciding on a talking with family Atripla (this is a combination pill of Sustiva plus Truvada) treatment combination, including: and friends. People Reyataz and Norvir plus either Combivir or Truvada • Your lifestyle • Which treatment should do whatever is regimen preserves your future Twice-daily Kaletra plus either Combivir or Truvada treatment options • How powerful Twice-daily Lexiva and Norvir plus either Combivir or Truvada a combination it is • What side comfortable for them, Each of these treatment combinations include at least one drug from effects it can cause • Other but not talking about it is not an option! If two different types, or “classes” of HIV medications. Each class of illnesses you may have (such as you don’t talk to medication stops HIV from making copies of itself at a different hepatitis C), as this can affect which HIV medications are best for you. anyone about it, you’ll moment in its reproductive cycle. The following are the four classes of suffer for it.” — David Lee, age 44, diagnosed in 1995, case manager22 23
  12. 12. STEP 7 DEALING WITH HIV TREATMENT You’ve made the commitment to begin treatment and settled He got better, but the meds left on your first HIV medication regimen. To ensure that your him feeling drained and exhausted, meds keep working, you’ll need to take your doses on time, so he stopped taking them— every time. But there may be challenges waiting to trip you without telling his doctor. up, including: “I believed that somehow God would spare me,” Keith says, “My life right now Side effects Pregnancy “until I got sick. Then I started to is very good, and I’m not sure I Depression, drug addiction or other personal problems realize that this was serious and I would be able to Forgetting to refill your prescription had to do something or I was say that had HIV going to die.” He talked to his Illnesses or injuries Family emergencies or travel doctor, who suggested a new Getting tired of taking meds every day treatment regimen with fewer not entered into it, Whatever the reason, and however hard it may be to talk about it, it’s side effects. because it really extremely important to bring up the problem with your HIV specialist or Keith has been on HIV treatment made me explore case manager before the problem interferes with your med schedule. ever since; his CD4 count is now who I am, why I’m Take side effects, for instance. Keith Green’s story is a perfect example of a very healthy 646, and at the age here, and find what not to do when side effects strike. Keith started HIV treatment at the of 30, he’s back in college getting purpose.” — Keith Green, age 30, age of 18, when his CD4 count was only 30. a degree in social work. diagnosed in 199424 25
  13. 13. “HIV changed me. STEP 8 It taught me to genuinely GATHERING STRENGTH FROM OTHERS care for other people.” People say that HIV is color blind—and they’re right. But “The best let’s not kid ourselves: HIV may be the same virus even if response when you’re African American, but having it doesn’t always mean I told someone the same thing. Read how HIV has transformed the lives of I was HIV these brave people: positive was from my “For some people I’ve talked “HIV has changed my life totally. daughter, who looked up at me “Once I became comfortable being to, HIV changes their lifestyle— “Keep your head up! HIV is not with those little brown eyes she HIV positive I was now they feel a punishment....Don’t let it has and said, ‘Well Daddy, no healthier and monopolize your life! It’s very comfortable with matter what happens to you, I will are not abusing important that myself, period. I always love you.’ After that, it’s themselves you learn to love like, you know, who cares? anymore. That’s yourself.” Everybody else can take a number, found myself making more friends, talking what happened to me.” —Regina Brandon, 42, diagnosed in 1990 because I’m all right now.” to more people. I —Precious Jackson, 33, diagnosed in 1998 —David Garner, 45, diagnosed in 1993 “All the friends really began to “HIV gave me “HIV makes me that I told, they have a social life. Through HIV, I lemons, so I make every all got emotional day count.” found socialization, made lemonade. and started —Bishop Kwabena crying. But all of something that I And its damn Rainey Cheeks, 54, diagnosed in good lemonade!” 1984 them, they said, ‘No matter what, —Michelle Lopez, 38, Raven, we will still love you and always lacked.” — D’Jaun Black, age 22, diagnosed in 1991 you will always be our friend.’” —Raven Lopez, 16, diagnosed 1991 diagnosed in 200426 27
  14. 14. STEP 9 PUTTING IT ALL TOGETHER In this booklet, we’ve talked about some of the most HIV medications on time every critical steps to take if you’ve been recently diagnosed with day if that’s what you need to do. HIV: educate yourself about HIV, find HIV support Talk to your HIV specialist, services and an HIV specialist, and prepare for and start a counselor or a support group HIV treatment if necessary. But perhaps the most important about these issues, and ask “When my parents step you can take is the one that makes all the other steps yourself what you can do to learned about my possible: accepting your diagnosis and planning your future improve the situation. Never as a person living with HIV. underestimate the impact that emotional health can have on diagnosis, they did not say, I dont Regardless of the reason you were infected, something as life-changing your physical health. know you. They as an HIV diagnosis usually gives people an unexpected chance to said, What do you re-examine their lives. Many people with HIV say that their diagnosis As we’ve explained in this turned out to be an opportunity to better their lives. That may sound want us to do, booklet, there’s little physical crazy to you right now, but having to face a serious health problem besides keep loving difference between being an can motivate you to dig deep and make changes in your life that you HIV-positive African American may have been putting off, or that you never even realized you and being an HIV-positive person you? ” — Robert Mintz, needed to make. of another ethnicity. But there Some of these changes, of course, may be staring you in the face. may be an emotional difference. age 59, diagnosed in 1983 If you drink too much or don’t exercise, it’s time to change. Anything that adds stress, frustration or conflict—be it a bad relationship, a Fifteen years after Magic soul-crushing job or trouble paying the bills—can be a drag on your Johnson made his famous immune system, or can make it harder for you to commit to taking your announcement that he was HIV28 29
  15. 15. “The best thing since positive, stigma and denial are still strong. HIV stigma is as much your testing HIV positive is that enemy as HIV is. Like HIV, it can get under your skin and start to I’ve grown a lot through produce fear, shame and self-hatred. this challenge. My parents could probably You may have to do a lot of work and seek out emotional and maybe testify to that. … It’s not spiritual support, before you can educate friends and family about the an easy thing. It’s not realities of HIV, and help them separate the facts from the myths. an easy road. When you But know that isolation and silence are hazardous to your health. If have to disclose, it makes it even harder. So I you don’t feel comfortable going to an HIV/AIDS organization for just thank God every day that I have a second support, the Internet may be a lifesaver. There are an assortment of chance to go out there and speak and share.” Web sites where you can learn more about HIV and its treatment, stay —Teniecka Hannah, age 26, diagnosed in 2001 on top of the latest HIV news and even meet people. But it’s up to you to get out there. Once you connect with others, you’ll be surprised at how invaluable you’ll find the emotional support. THINGS TO REMEMBER: There are one million HIV-positive people in the United States—many • H I V I S N O T A D E AT H S E N T E N C E . in the same position as you. Reach out for that support; it will A positive test result—even if your CD4 count is low—gives you the warning you strengthen you and challenge you to keep going, keep growing and need to take control of your health and stop the disease from getting worse. The majority of people who take HIV medications can plan on long and healthy lives. keep living life to the fullest. • HIV IS NOT A PUNISHMENT FOR SIN O R I M M O R A L I T Y. HIV is a virus that causes a disease. It does not discriminate. Anyone can get it. • H I V I S N O T A R E A S O N T O B E AT Y O U R S E L F U P. Taking responsibility for your health is important. But focus on the present, not the past. Learn new ways to heal yourself, not blame yourself.30 31
  16. 16. “You’re not alone! There aremore people than you thinkout there with HIV!” Thais Sherell JJoyce McDonald, age 55, diagnosed in 1995“HIV made me question life. It made me takeon a whole new outlook. My life right now isvery good, and Im not sure I would be able tosay that had HIV not entered into it, becauseit really made me explore who I am, why Imhere, and find purpose.”Keith Green, age 30, diagnosed in 1994YO U R E A N A F R I C A N A M E R I C A N. YO U V E J U S T B E E N D I A G N O S E DW I T H H I V. W H AT D O YO U D O N E X T ?• Begin with your health care professional.• Use this booklet.• Then visit for more information.Body Health Resources Foundation was formed to improve the quality of lifeof people affected or infected by HIV. The Foundation’s mission is to provideeducation for people at risk for HIV, those living with HIV, and those whoprovide health care to people with HIV.The Foundation was established by, the Internet’s most completeHIV/AIDS resource, serving more than one million visitors per month.