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TABLE OF CONTENTS
Did You Just Test HIV Positive? ......................................................3

STEP 1: Getting Smart About HIV ........................................................4

STEP 2: Getting Connected to Support................................................8

STEP 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 the
STEP 8: Gathering Strength From Others ............................................26                                                    world about HIV and HIV-positive
                                                                                                   But pay attention to this: There is
STEP 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 to

Consult your doctor! The only purpose              discuss your options with a health              two people newly diagnosed            your health. That’s why it’s vital to
of this booklet is to educate and to               care provider who specializes in                with HIV is African American.         know the facts. Read on to learn
inform. It is no substitute for                    treating HIV.
                                                                                                                                         more about HIV—and to discover
professional care by a doctor or other
                                                   We would like to thank Bethsheba                So, take a deep breath. No
medical professionals. Body Health                                                                                                       some helpful steps you can take
Resources 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, know
treatment option mentioned in this
booklet. Instead, we encourage you to              Green for his thorough read.                    that there is a big community of



                                                                                                   “Hold on! Don’t give up! You
Funding for this booklet comes in part from educational grants provided by
Bristol-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
“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 1998




4                                                                                                                                                   5
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-negative
MYTH | 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! I'll tell you
                                                                                                                                                      partner safe.
                 HIV-positive mother and her child live long, healthy
                                                                                                                                                       Plus, you can
                 lives together.                                                   right now, when I wasn't 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
                                                                                   weren't working, I got sick.... Now I'm
                 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
“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:
                                                                                              www.thebody.com/hotlines.html
                                                                                              or call the National HIV/AIDS               — Marcya Owens, age 36,
                                                                                              Hotline at 1-800-232-4636.                         diagnosed in 1994

8                                                                                                                                                               9
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 Chicago



10                                                                                                                                                 11
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 1994

12                                                                                                                                                                  13
“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 don't 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 have




14                                                                                                                                                                  15
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
“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 it's 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, you'll have            medications
     control with the very first combination of medications that works for you.
                                                                                   new responsibilities. You'll 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
.
     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
     friend's couch, it may be unrealistic to assume you'll be able to take all
                                                                                                      HIV-positive people of other races.
     your medications all the time. It's 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
“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 manager
22                                                                                                                                                   23
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 1994




24                                                                                                                                                      25
“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 it's 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 2004
26                                                                                                                                                   27
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 don't
     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 HIV



28                                                                                                                                               29
“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
“You’re not alone! There are
more people than you think
out there with HIV!”




                                                   Thais Sherell J
Joyce McDonald, age 55, diagnosed in 1995




“HIV made me question life. It made me take
on a whole new outlook. My life right now is
very good, and I'm not sure I would be able to
say that had HIV not entered into it, because
it really made me explore who I am, why I'm
here, and find purpose.”
Keith Green, age 30, diagnosed in 1994




YO 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 D
W 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 TheBody.com/Foundation for more information.



Body Health Resources Foundation was formed to improve the quality of life
of people affected or infected by HIV. The Foundation’s mission is to provide
education for people at risk for HIV, those living with HIV, and those who
provide health care to people with HIV.

The Foundation was established by TheBody.com, the Internet’s most complete
HIV/AIDS resource, serving more than one million visitors per month.

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HIV & ME

  • 1.
  • 2. TABLE OF CONTENTS Did You Just Test HIV Positive? ......................................................3 STEP 1: Getting Smart About HIV ........................................................4 STEP 2: Getting Connected to Support................................................8 STEP 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 the STEP 8: Gathering Strength From Others ............................................26 world about HIV and HIV-positive But pay attention to this: There is STEP 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 to Consult your doctor! The only purpose discuss your options with a health two people newly diagnosed your health. That’s why it’s vital to of this booklet is to educate and to care provider who specializes in with HIV is African American. know the facts. Read on to learn inform. It is no substitute for treating HIV. more about HIV—and to discover professional care by a doctor or other We would like to thank Bethsheba So, take a deep breath. No medical professionals. Body Health some helpful steps you can take Resources 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, know treatment option mentioned in this booklet. Instead, we encourage you to Green for his thorough read. that there is a big community of “Hold on! Don’t give up! You Funding for this booklet comes in part from educational grants provided by Bristol-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
  • 3. “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 1998 4 5
  • 4. 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-negative MYTH | 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! I'll tell you partner safe. HIV-positive mother and her child live long, healthy Plus, you can lives together. right now, when I wasn't 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 weren't working, I got sick.... Now I'm 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
  • 5. “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: www.thebody.com/hotlines.html or call the National HIV/AIDS — Marcya Owens, age 36, Hotline at 1-800-232-4636. diagnosed in 1994 8 9
  • 6. 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 Chicago 10 11
  • 7. 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 1994 12 13
  • 8. “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 don't 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 have 14 15
  • 9. 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
  • 10. “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 it's 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, you'll have medications control with the very first combination of medications that works for you. new responsibilities. You'll 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
  • 11. . 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 friend's couch, it may be unrealistic to assume you'll be able to take all HIV-positive people of other races. your medications all the time. It's 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
  • 12. “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 manager 22 23
  • 13. 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 1994 24 25
  • 14. “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 it's 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 2004 26 27
  • 15. 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 don't 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 HIV 28 29
  • 16. “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
  • 17. “You’re not alone! There are more people than you think out there with HIV!” Thais Sherell J Joyce McDonald, age 55, diagnosed in 1995 “HIV made me question life. It made me take on a whole new outlook. My life right now is very good, and I'm not sure I would be able to say that had HIV not entered into it, because it really made me explore who I am, why I'm here, and find purpose.” Keith Green, age 30, diagnosed in 1994 YO 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 D W 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 TheBody.com/Foundation for more information. Body Health Resources Foundation was formed to improve the quality of life of people affected or infected by HIV. The Foundation’s mission is to provide education for people at risk for HIV, those living with HIV, and those who provide health care to people with HIV. The Foundation was established by TheBody.com, the Internet’s most complete HIV/AIDS resource, serving more than one million visitors per month.