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After You've Tested Positive (Additional PLUS Reading Materials)


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After You've Tested Positive (Additional PLUS Reading Materials)

  1. 1. BOOKLET 1 OF 3 HIV HEALTH & WELLNESSAfter you’vetested positive JANUARY 2013 your life matters
  2. 2. Table of contentsUsing this booklet ... 2How is today different from earlier in the epidemic? 3What is important to think about first? 4KNOWLEDGE: Getting informed about HIV What is HIV disease? 5 Your immune system 6 Do you have to start meds right away? 7 HIV treatment guidelines 8 Two blood tests: CD4 count and viral load 9HEALTH: Getting involved in your well-being Getting into care as soon as possible 10 Developing a relationship with your doctor(s) 11 Your first few doctor visits 12–13 Think about your general health 14 Ways to improve your health 15 Consider other aspects of your life 16SELF-ADVOCACY: Learning to support yourself How do you get into health care? 17 Telling others about your status 18 Laws regarding disclosure and discrimination 19 Lining up support 20–21RESOURCES: Checklist for getting started 22 Online resources that may help 23 HIV Health & Wellness: After you’ve tested positive 1
  3. 3. Using this booklet ... The main focus of this booklet is to let you know that you can live well with HIV and how to do so. It may take some time for that message to sink in, because adjusting to this new life may be an emotional road on top of it being a physical one. But the information in this booklet has been written to answer questions that many people have after testing positive. You’re not alone, and with resources and effort you can live a long and healthful life with HIV. In these pages, you’ll find topics that will help you under- stand more about your diagnosis. We’ve organized this booklet into three areas: knowledge (what’s useful to know), health (what may be helpful to do), and self-advocacy (how to get what you need). Getting informed about HIV, being actively involved in your health, and talking things out with your clinician and support network can result in a longer, healthier life. You don’t have to figure all of this out at once. Read this booklet at your own pace and revisit it from time to time as you feel ready for more. We offer this information to help support the relationship with your health provider(s). HELPFUL RESOURCES Just Diagnosed Resource Center HIV Health & Wellness: After you’ve tested positive
  4. 4. How is today differentfrom earlier in the epidemic?Living with HIV today is very different from what it waslike in the 80s or 90s. You may have some real fears aboutstarting medicines or the prospect of living with HIV. Thesefears are normal but some of them may be influenced byoutdated information or by stories of what it was like livingwith HIV in the early years. Early in the epidemic, many people got sick well beforethey even knew they had HIV. They often went to emergencyrooms to be treated for illnesses like pneumonia. This doesn’thappen at the same rate as before. HIV is now sometimes considered a chronic disease, likediabetes or heart disease. This means it’s something to beaware of and treat each day of your life, once you start meds. HIV is certainly not a walk in the park, but much more isknown about how to treat it. Medicines have dramaticallyimproved and extended the lives of people living with HIV,and today’s drugs are generally safer, better tolerated andeasier to take. Plus, there are other steps you can take toprolong your life and maintain your health. _______ MAIN POINTS TO REMEMBER _______ many support services available to help you do so. don’t have to do everything at once. HIV Health & Wellness: After you’ve tested positive 3
  5. 5. What is important to think about first? You’ve already done a lot by learning your status and begin- ning to adjust to living with HIV. Your diagnosis can be a wake-up call to be more proactive about your health, develop a healthier lifestyle, and take advantage of treatment. You may have some time to consider the many aspects to this new development in your life. These include lining up different types of support, finding a doctor experienced in treating HIV, making decisions about treatment, and getting linked into local resources to help you make the most of your well-being. Finding others who live with HIV, as well as case managers or social workers, can go a long way to support you in living well. _______ MAIN POINTS TO REMEMBER _______ if you start treatment right away, take some time to find an experienced doctor you like as well as a support system. case manager or finding support groups or others with HIV.4 HIV Health & Wellness: After you’ve tested positive
  6. 6. What is HIV disease?Simply put, HIV disease is a disease of the immune systemcaused by a virus. It can also affect other parts of the bodysuch as the brain or kidneys. The Human ImmunodeficiencyVirus (HIV) gets into immune cells — especially CD4 cells— and uses them to reproduce. Since CD4 cells direct theimmune response to most diseases, as HIV infects and killsmore CD4s, your body loses its ability to fight off illnessescalled opportunistic infections, or OIs. Damage to your immune system doesn’t happen the sameway in everyone. In some people HIV weakens the immunesystem rapidly, in just a few years, while in a very smallnumber of people this doesn’t happen at all. In most people,without HIV treatment, it takes about 8–10 years before theyface their most serious symptoms. However, it’s important to start treatment before symptomsappear, because HIV begins causing silent damage to thebody years before symptoms develop. With early and effec-tive treatment, many people can live a near-normal lifespan.Almost everyone will eventually need to start treatment. The words HIV disease can make it seem like you shouldfeel sick, when in fact you can feel quite well a lot of the time.For this reason, some people say they live with HIV or areHIV-positive. However, the term AIDS is different. It’s thelatter stage of HIV disease, when an HIV-positive person haslost a lot of CD4 cells or developed certain OIs or cancers.Today, AIDS is seen much less often than in the 80s and 90s. HIV Health & Wellness: After you’ve tested positive 5
  7. 7. Your immune system The immune system is made of many parts: cells, tissues, organs, fluids and vessels. Some of these include the skin, appendix, tonsils, spleen, thymus and lymph glands. The immune system is always on alert to find microorganisms like viruses or bacteria. When one is found, the immune system goes into action in many complex ways to get rid of it so it can’t cause disease. Often you can feel various symptoms like headache, fever or aches and pains. This is why, during early HIV infection, many people feel like they have the flu. Although the immune system can control HIV to some degree in most people over time, HIV can still push it out of balance, cause inflammation, harm the body and destroy immune cells that may not be easily replaced. One way to help maintain a healthy immune system is to get into care as soon as possible to keep track of your health. Taking HIV medicines is the only way we know to control the virus over time. _______ MAIN POINTS TO REMEMBER _______ immune cells that are not easily replaced.6 HIV Health & Wellness: After you’ve tested positive
  8. 8. Do you have to start meds right away?The answer to this depends on your situation.Some newly diagnosed people do not haveto start right away. You will hopefully havetime to get used to your diagnosis, learnabout HIV and get your “ducks in a row.”This includes understanding the benefitsand risks of treatment and figuring out howand where to get your medications. However, some peopleshould start HIV treatment right away. If blood tests show that your immune system is not con-trolling HIV or you have other illnesses that make you lesshealthy, you may need to start right away. Pregnant HIV+women are also advised to start, as are people with hepatitis Band hepatitis C and people who are over 50 years old. Most experts believe that it’s best for the average personto start HIV treatment when they are still fairly healthyand have at least 500 CD4 cells. Some experts believe thatstarting even earlier — no matter the CD4 count — couldbe even better. It is also important to know that if your HIV levels arevery low you are far less likely to transmit HIV to your sexpartners. Since effective HIV treatment significantly lowersviral load, some people may decide to start treatment forthis reason. HELPFUL RESOURCES When to Start Treatment HIV Health & Wellness: After you’ve tested positive 7
  9. 9. HIV treatment guidelines The US Guidelines for treating HIV infection in adults were last updated March 2012. A panel of more than 30 HIV-experienced doctors, researchers and community representatives inter- pret the most current HIV research and make recommendations. The US Guidelines state that HIV treatment should be offered to all people with HIV no matter what their current CD4 count happens to be. These Guidelines are recommendations — not strict rules — but they’re an im- portant source of information. You and your doctor should use the Guidelines to make treatment decisions, while also considering your unique health needs, lifestyle and ability to start and stay on a regimen. _______ MAIN POINTS TO REMEMBER _______ decisions. other aspects of your health and ability to start HIV meds. booklet 2: Considering treatment and your health care, page 8. HELPFUL RESOURCES US Guidelines for Treating HIV Infection in Adults
  10. 10. Two blood tests: CD4 count, viral load Two blood tests are used to trackHIV infection, which can informdecisions about starting or chang-ing HIV treatment. The first, theCD4 count, shows how many ofthese important immune cells arefound in a sample of blood, whichrepresents the total amount inyour body. CD4s can be thought ofas the “managers” of the immunesystem, by telling other cells what to do. The goal is to keepyour CD4s as high as possible for as long as possible. The other test, the viral load, shows the amount of HIVfound in a sample of blood, which represents the totalamount in your body. Another reason to use HIV treatmentis to keep viral load as low as possible for as long as possible,ideally below 50 copies or what is called undetectable. _______ MAIN POINTS TO REMEMBER _______ Keep it as high as possible for as long as possible. - ment is controlling HIV. Keep HIV levels as low as possible for as long as possible. HELPFUL RESOURCES Blood Work: Two Common Tests HIV Health & Wellness: After you’ve tested positive 9
  11. 11. Getting into care as soon as possible Getting into care can improve your quality of life even before you start treatment. This is because people with HIV often have other health problems (such as depression or high blood pressure) that should be treated. You and your doctor will need to assess your health and begin to plan for the future. Many people develop a more assertive attitude about their well-being when they find out they have HIV. Because HIV treatment can be complicated, making decisions about when, how and whether to start isn’t always easy. One positive step is to play a part in your health care decisions. Another is communicating thoughtfully with your provider(s). Some issues in your life may make it hard for you to see a doctor regularly, such as drug and/or alcohol use, unstable housing or lack of insurance and other resources. These issues can be addressed as you establish your HIV care. Your doctor may be able to refer you to a case manager or social worker. (See pages 20–21.) _______ MAIN POINTS TO REMEMBER _______ lack of insurance or domestic violence. make the most out of living well with HIV. HELPFUL RESOURCES AAHIVM Directory (see ReferralLink on right) GLMA Directory (click FIND A PROVIDER at top) HIVMA Directory (click FIND AN HIV PROVIDER at top)10 HIV Health & Wellness: After you’ve tested positive
  12. 12. Developing a relationshipwith your doctor(s)Many people simply do whatthey’re told when it comesto their health. So activelyworking with your doctormay be a new experience.It may feel odd at first, andsome doctors are unfamiliarwith patients asking lots ofquestions or questioningtheir advice. Either way, relationships take effort on bothends. If you decide that your provider isn’t right for you, it’ssometimes possible to switch to someone else. People who take a more active role in making their ownhealth care decisions tend to have better overall health. Youmay find that developing a closer relationship with otherstaff in your doctor’s office, like a nurse practitioner (NP)or physician’s assistant (PA), can help. Talking to a pharma-cist is another resource. You may also be able to get secondopinions from other doctors your friends or family see. _______ MAIN POINTS TO REMEMBER _______ time and practice. to have better overall health. HELPFUL RESOURCES Patient/Doctor Relationship HIV Health & Wellness: After you’ve tested positive 11
  13. 13. Your first few doctor visits The first few visits after your diagnosis are important for you and your doctor. They are the foundation for what you learn about HIV and how you and your doctor will work together to treat it. Your first visit to a doctor after your diagnosis can be an emotional time. Many doctors are sensitive and caring, and respond well to your needs. However, they have time constraints and are there to provide medical care, not necessarily emotional support. Friends, family, support groups, social workers and therapists can help with emotional support. If possible, you may want to interview doctors before you make a final decision on who you want to see. You have the right to make sure you’re comfortable with your provider and to seek other help if the relationship isn’t working for you, though this is not always possible. help you make the most of your visits. you to make sure you remember to ask the most important questions and that they get answered. seeing a new doctor.12 HIV Health & Wellness: After you’ve tested positive
  14. 14. It’s important to get a full exam and medical history.Be open and honest about what you know about yourhealth. Some conditions such as diabetes and hepatitis Ccan complicate treating HIV, so knowing about themearly and talking about them helps to ensure your health. Below is a list of common tests your doctor shouldrun to assess your health. about 2 weeks apart smear, perhaps HPV test for anal cancer antibody tests and history A and B or pneumococcal pneumonia HIV Health & Wellness: After you’ve tested positive 13
  15. 15. Think about your general health Many people find that as they adjust to living with HIV their diagnosis can motivate them to seek help and taking charge of many aspects of their lives. Take the time to explore ways to improve your health. Some of these are found on page 15. For example, stopping smoking can greatly reduce health risks within the first year or two of quitting. Some foods (those high in sugar and saturated fats) can contribute to conditions like diabetes and heart disease. Stress causes chemicals to release in the body that affect the immune sys- tem. Engaging in safer sex prevents you from getting sexual infections, and helps prevent transmission of HIV to your partner(s). Depression is common among people with HIV. Recog- nizing and properly treating it can help you make better health decisions. Excessive alcohol and drugs can harm the liver and other organs, and make it harder to take your HIV meds regularly. Certain techniques such as stress reduction can improve health. _______ MAIN POINTS TO REMEMBER _______ with your own. HELPFUL RESOURCES Maintain Your General Health Nutrition & Diet Tips HIV Health & Wellness: After you’ve tested positive
  16. 16. Ways to improve your health drugs are generally easier to take and tolerate. OB-GYNs, etc. appointments tend to do less well with their health. treatment, including diabetes, hepatitis, high blood pressure, etc. dietician. - stand something. HIV Health & Wellness: After you’ve tested positive 15
  17. 17. Consider other issues in your life Some health issues such as “street drug” abuse, alcohol abuse, domestic violence, mental health issues and homelessness can be very difficult to face on your own. Finding supportive people you trust can be an essential first step. Social services, support groups and supportive friends and family can be very help- ful as you pursue bringing more health into your life. Support groups for all types of issues (including HIV) can improve an individual’s health. Being able to tell your story to people who understand can be very healing and such groups are rich with advice about how to deal with the issues you face. Although more AIDS service organizations are found near cities, no matter where you live you can usually find case managers, social workers or peers who can help connect you with local services that can help you with the issues you face. _______ MAIN POINTS TO REMEMBER _______ other aspects of your life. making changes. - tion can be healing and empowering.16 HIV Health & Wellness: After you’ve tested positive
  18. 18. How do you get into health care?Some people have few problemsgetting the cost of their health carecovered by private insurance, whichis generally funded by your currentor former employer. However, manypeople with HIV rely on public healthcare programs or coverage funded byfederal and state governments (Medicaid, Medicare, RyanWhite, and AIDS Drug Assistance Programs). You can probably find health care that you can afford orthat’s free of charge. The difficult part can be locating theseresources and putting together affordable care by combin-ing several services. Read pages 19–21 in Project Inform’spublication, Considering treatment and your health care. A qualified benefits counselor can help you figure outa way through this maze, as can some case managers andsocial workers. Check with your local AIDS service organi-zation, or go online to _______ MAIN POINTS TO REMEMBER _______ their health care, and usually you can find coverage. help find ways to cover your health care. HELPFUL RESOURCES Medicaid & Medicare Pre-existing Conditions Insurance Plans, HIV Health Reform HIV Health & Wellness: After you’ve tested positive 17
  19. 19. Telling others about your HIV status Telling others about your status can feel scary, but it may also help you cope. People who share this news may enjoy better health, probably due in part to relieving the stress from keeping it a secret. Being open about your status with your medical providers can help ensure you get the best care. You  don’t  have  to  tell  everyone  —  or  even  anyone  —   and  you  don’t  have  to  do  it  all  at  once.  Choose  carefully   who  you  want  to  tell  and  who  you  think  will  respond  well   to  the  news.  Think  about  what  you  would  do  if  it  doesn’t   go  well  and  be  prepared  for  various  reactions,  even  from   doctors  and  nurses. Telling  others  could  also  mean  facing  the  risk  of  aban-­ donment  or  even  violence.  If  you  fear  telling  those  close  to   assistance  group  to  work  through  those  relationship  issues. _______ MAIN POINTS TO REMEMBER _______ HELPFUL RESOURCES Telling Others about Your HIV To Tell or Not to Tell HIV Health & Wellness: After you’ve tested positive
  20. 20. Laws regarding disclosureand discriminationTelling your co-workers or employers about your HIV statusis a different type of disclosure and should be consideredcarefully before making decisions. Investigate your optionswith legal experts before disclosing your status at work. The Americans with Disabilities Act (ADA) state thatemployers do not have the right to ask about a disability oryour health before hiring you. People with HIV are protect-ed by the ADA, which means your employer can’t discrimi-nate against you and must reasonably accommodate yourphysical needs at work. If you need accommodations, youwill need a letter from your doctor, which can state you havea chronic condition as opposed to having HIV or AIDS. Important federal and state laws prohibit both the dis-closure of medical information and discrimination againstHIV-positive people. The laws are not perfect and are inter-preted differently in each state, so it’s important to under-stand the limits of the laws in your area. Some states and foreign countries have laws that make ita crime to knowingly transmit HIV to someone else or evento fail to disclose your status to your sex partners. While theselaws are clearly meant for people who try to infect anotherperson, they have been used — especially in some states —to threaten or prosecute others. In fact, some laws state thattransmission doesn’t have to happen for possible prosecution.It’s important to know the laws where you live. HELPFUL RESOURCES Americans with Disabilities Act Q&A HIV Health & Wellness: After you’ve tested positive 19
  21. 21. Lining up support Although many ser- vices exist for people with HIV — such as medical care, support groups, peer mentors, and referrals to housing and other resources — it’s up to you to engage with them and decide if they’re right for you. You may have to keep working at it because the first contact may not be the right fit. Many people seek peer and other types of support during the first few months or years after their diag- nosis. This can be a helpful way to get used to the new “surroundings,” so to speak. Many find this is a temporary but important way to seek help until they feel secure about what is needed. You may even find someone who becomes a friend or confidante. CASE MANAGER / SOCIAL WORKER / BENEFITS COUNSELOR Many community agencies have case managers or social workers who can help you find local resources. Talking to them may solve some of the practical issues you face, like finding transportation, housing or ways to cover your health care costs. Some agencies offer these services for free. Dial “211” for local service re- ferrals, or use the Resource Finders on the next page.20 HIV Health & Wellness: After you’ve tested positive
  22. 22. SUPPORT GROUPS / FRIENDSSupport groups are one way to find a safe space to talkabout your life. Studies show that people who partici-pate in support groups enjoy better health and qualityof life. It may take time to find one that suits you. Somepeople have even started their own groups. Check localcommunity based organizations for referrals. You canalso dial “211” to get local referrals.CHAT ROOMS, BLOGS, AND “ASK THE EXPERTS”Several HIV-related websites offer support anonymously.Thousands of people have used this type of support forongoing help or even a quick answer to a nagging ques-tion. But be aware that there’s a lot of misinformationon the Internet. HELPFUL RESOURCES - RESOURCE FINDERS - National Prevention Information Network ASO Finder ASO Directory State AIDS Hotlines - COMMUNITY SUPPORT RESOURCES - Ask the Experts AIDS Meds/Poz Community Forums Yahoo support groups for HIV+ people HIV+ Bulletin Boards The Well Project (for women) HIV Health & Wellness: After you’ve tested positive 21
  23. 23. Checklist for getting started I’ve found support people, such as a social worker or benefits counselor, who can help me find local services or care. I’ve found a doctor experienced in treating HIV. I know a doctor to go to for my first appointment. I’ve made my first appointment. I’ve found other providers, like a dentist or gynecolo- gist, who understand how to treat people with HIV. I’ve written questions down for my first doctor visit. I’ve considered telling others about my status and have made a plan for how to do it. I’ve considered my emotional support needs and will seek help. I know how I’ll pay for my HIV care, meds and tests. I’ve talked to my doctor about vaccines I may need. I’ve talked to my doctor about screenings I should get, such as hepatitis B and C, cervical and anal Pap smears. My first results are: ____ CD4s, ____ viral load. My second results are: ____ CD4s, ____ viral load. I know what these test results mean. I know what I need to do to get ready for making decisions about treatment. If I have questions and my doctor is not available, I can call _______________ or ______________.22 HIV Health & Wellness: After you’ve tested positive
  24. 24. Online resources that may helpRESOURCES FOR HIV CARE FOR PEOPLE OF COLORProject Inform Asian/Pacific Islander Wellness HIVhealth Black AIDS InstituteDirectories for ASOs (in CA) Latino Commission on AIDS Nat’l Minority AIDS Coalition www.nmac.orgDirectories for HIV Providers Native Prevention Center (ReferralLink on right) (click FIND PROVIDER at top) FOR WOMEN The Well Project (click FIND PROVIDER at top) WORLDState AIDS Hotlines Women Alive www.women-alive.orgINSURANCE PROGRAMS,HELP WITH HEALTH COSTS CONNECTING WITH OTHERSCenters for Medicaid/Medicare HIV+ Bulletin Boards bbs/ubbthreads.php National Association of PWAsHIV Health Reform Poz Community ForumsMedicare Yahoo Support GroupsPre-existing Conditions Plans, com/group/hivaidsnetwork/Welvista HIV Health & Wellness: After you’ve tested positive 23
  25. 25. HIV HEALTH & WELLNESSProject Inform created this series of three publicationsto address commonly asked questions and issues thatpeople face as they come to terms with their HIV statusand begin addressing their health care needs. After you’ve tested positiveBooklet 1 helps guide individuals on basic things to do afteran HIV diagnosis, with an emphasis on understanding HIV infec-tion, getting into care, and finding a support network. Considering treatment & your health careBooklet 2 explores making decisions, from considering treat-ment to talking things out with doctors and thinking aboutwhen to start and what to use. Now that you’ve started treatmentBooklet 3 focuses on issues related to living well with HIV, suchas how to do well on your meds, when and why to switch regi-mens, family planning, and managing co-conditions. Project Inform acknowledges Liz Highleyman for her review and edit of booklets 1 and 2.
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