AIDS AND YOU

"Hold on! Don't give up! You can still live a good life! Having HIV is not the end -having no hope is."

We don't want to make light of what you're going through. Getting an HIV diagnosis may feel like the worst thing that has ever happened to you.

But pay attention to this: There is life after testing positive. One million Americans are now living with HIV, and one out of every two people newly diagnosed with HIV is African American.

So, take a deep breath. No matter how alone and depressed you may feel right now, know that there is a big community of HIV-positive folks out there ready to provide information, support, advice and many other resources.

First, let's get something straight: There's a whole lot of fear, ignorance and prejudice in the world about HIV and HIV-positive people. This may cause you to feel guilty, depressed or angry in ways that can be hazardous to your health. That's why it's vital to know the facts. Read on to learn more about HIV -- and to discover some helpful steps you can take to live fully with HIV.

Once you find out that you are HIV positive, one of the most important things you can do is get informed.

THE FACTS ABOUT HIV: There are hundreds of different kinds of viruses in the world. Some are just annoying, like the viruses that cause colds. Others, like HIV or the hepatitis C virus, can cause serious, even life-threatening, illnesses. By taking care of your body -- which includes taking HIV medications that can control HIV -- you can prevent many HIV-related illnesses.

WHAT HIV DOES TO YOUR BODY: HIV invades your body because it needs a living organism to reproduce. The reason HIV is dangerous is that it sets up shop in your immune system, your body's natural defense against disease. It especially targets your "CD4 cells," also called "T cells." HIV takes command of these cells -- like a pirate taking over a ship -- and uses them to reproduce itself, creating millions of new viruses every day.

Unfortunately, these CD4 cells are the very cells that your body uses to fight infections, so when HIV takes them over, it weakens your immune system.

The stronger your immune system, the longer it can keep up the fight against HIV. If you treat your immune system well -- especially by reducing stress, avoiding alcohol and not smoking cigarettes or using recreational drugs -- your immune system may be able to keep HIV in check for years.

But even if you treat your body well, HIV can still eventually get the upper hand. Then it's time to call in the big guns: HIV medications.

We'll talk more about CD4 counts and HIV medications later. First let's dispel some myths about HIV.

Myth Versus Reality

Even though the facts about HIV are well known and agreed upon by every HIV specialist and every single HIV/AIDS organization in the United States, there remains a lot of misinformation about HIV.

MYTH: HIV CAN BE TRANSMITTED CASUALLY.

REALITY: There are no documented cases of HIV being transmitted casually through handshakes, hugging, sharing cups, dinner plates or using the same bathrooms.

MYTH: HIV DOESN'T CAUSE AIDS.

REALITY: After 25 years, there is a mountain of proof that HIV causes AIDS. Everyone who ever got sick or died from AIDS had one thing in common: They had HIV.

MYTH: HIV-POSITIVE WOMEN SHOULD NOT GET PREGNANT.

REALITY: More and more women with HIV are giving birth to HIV-negative babies. By taking the right HIV drugs while pregnant -- especially during childbirth -- an HIV-positive woman can reduce the risk of passing the virus to her baby to 1 or 2 percent. HIV treatment can help an HIV-positive mother and her child live long, healthy lives together.

MYTH: THERE'S A CURE FOR HIV, BUT ONLY THE RICH HAVE IT.

REALITY: If rich people had a cure for HIV or AIDS, Magic Johnson, who is a multimillionaire, would be cured. Yes, Magic looks fantastic and -- even with HIV -- is healthier than many HIV-negative Americans. But that's because he takes care of himself and is on HIV treatment -- the exact same treatment available to everyone with HIV in the United States. Magic's wife, Cookie, has admitted that she was wrong to say that he was "cured." She meant that the medications he was taking had gotten rid of almost all the virus in his body, but he still remains HIV positive.

MYTH: TAKING HIV MEDICATIONS MEANS YOU DON'T HAVE TO PRACTICE SAFER SEX.

REALITY: The drugs can get rid of nearly all the virus in your blood. Although this will decrease the risk of infection to your sex partners, your blood, semen or vaginal fluids still contain HIV. This means that protected sex is the rule to keep your partner safe. Plus, you can get in legal trouble if you don't tell your partner about your HIV.

No matter how strong you might be, an HIV diagnosis is something that nobody should face alone. Make sure you connect with the community of HIV-positive people. It's one of the best steps you can take to begin to solve both the emotional and practical problems of living with HIV.

Start by Contacting Your Local HIV/AIDS Organization.

Knowing when you need help is vital. An HIV/AIDS organization can be a lifeline. Many organizations have case managers who can help you move forward on many of your health care issues. You'll find most or all of the following at HIV/AIDS organizations:

• HIV support groups
• Mental health and substance abuse counseling
• Case managers who can connect you to government aid you may need, such as Medicaid, disability insurance, medication assistance
• Expert information on HIV and nutrition, fitness and other issues
• HIV treatment information and adherence workshops to help with taking HIV medications
• HIV prevention counseling, safe sex workshops and free condoms

Most big cities have several HIV/AIDS organizations geared to meet the needs of different populations. For help in finding a local organization, call the National HIV/AIDS Hotline at 1-800-232-4636.

Even if you don't need treatment yet, you'll still need to find a medical professional experienced in treating people with HIV. Regular checkups with an HIV health care provider are extremely important, even when you don't feel sick.

You'll need to find a health care provider (this could be a physician, nurse practitioner or physician assistant) with special training in HIV who has treated 20 or more people with HIV in the past two years. You'll want someone who stays on top of the newest information about HIV medications, tests and other issues.

However, it's just as important to choose someone you like, someone you feel you can trust and be open with. This means you'll need to find someone you can be honest with about sensitive issues -- everything from sex, drugs and alcohol use to missing doses of HIV meds.

Your health care provider is your partner in fighting the virus. She or he will be your ally for a long time, helping you deal with the ups and downs of HIV disease, the drugs that control the virus, the side effects that may come with the drugs, and many other health issues. You need to be completely open with your health care provider in order for him or her to do their job -- which is to help you stay healthy.

Every person living with HIV deserves the best care possible, regardless of ability to pay. The good news is, not only do you deserve the best care, you can get it.

There's a nationwide network of services, programs and resources to help people with HIV remain healthy -- even people who have no insurance or low incomes.

Many big cities have state-of-the-art HIV clinics for people who have no insurance. When you enroll in these clinics, you get medical care from a top team of HIV health care providers as well as counseling and support for mental health, substance abuse and other issues. You may be assigned to a case manager, who will become the person you can turn to first for whatever help you need -- such as figuring out which government programs can pay for your HIV medications and HIV care.

Live in a rural area? Getting the best HIV care possible may mean traveling to the nearest city several times a year -- an extra effort, but one that will repay you with better health.

Now that you have figured out where you can get good care, one of the first questions you're likely to have is:

When Is it Time to Start Taking HIV Medications?

Your HIV-positive test result won't tell you the answer. All it tells you is that you've been infected with HIV. Some people can live many years with HIV before they need to take medications to control it.

However, every person who tests HIV positive should immediately have two additional tests: a CD4 count and a viral load test. These tests are the critical measuring tools you and your doctor will use to see what the virus is doing in (and to) your body.

The CD4 Count Test

This test, also known as a "T-cell count," gives an indication of the number of CD4 cells in your bloodstream. The more CD4 cells you have, the stronger your immune system is. After living with HIV for a while (if you don't take medications), the number of CD4 cells you have will usually fall. This is a sign that your immune system is being weakened. A normal CD4 count for someone without HIV is usually between 500 and 1,600. Experts generally agree that when your CD4 count goes below 350, you're at a high risk for developing potentially dangerous illnesses, so you should begin taking HIV medications before your CD4 count hits 350.

The Viral Load Test

Viral load tests provide an estimate of how much HIV is circulating in your blood. Generally speaking, your viral load is not considered as critical as your CD4 count in determining the health of your immune system. However, once you begin HIV treatment, it is a good measure of how well your HIV medications are working.

A viral load test measures the amount of HIV in a small amount (milliliter or mL) of your blood. Current viral load tests can detect as few as 50 copies of HIV per milliliter of blood. When your viral load test indicates that you have fewer than 50 copies/mL of HIV, your health care provider will tell you that your viral load is "below the limit of detection," or "undetectable." 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.

Do HIV Meds Work Differently in African Americans?

Generally, whether a person is black or white, HIV meds appear to work the same way. The real problem, experts say, may be that African Americans are already at a higher risk for some health problems that HIV meds can cause or worsen.

These Health Problems Include:

• High blood pressure (also called hypertension)
• High cholesterol
• Anemia (a low blood count, which can make you feel tired)
• Diabetes
• Hepatitis C (which, over time, can cause liver damage)
• Kidney disease

Dealing With HIV and Other Illnesses?

Be sure to stay on top of HIV as well as any other infections or illnesses. If you are infected, for example, with HIV and hepatitis B or C, your physician may refer you to a liver specialist who also specializes in HIV.

If you are seeing other health care providers, besides your HIV specialist, be sure that they are all in contact

Once your health care provider recommends that you begin treatment, it's important to consider how treatment will change your life. Are you ready mentally, as well as physically, to take medications every day? Remember: Most HIV specialists say that you have to take your medications as prescribed, at least 95 percent of the time, to keep HIV under control and prevent it from becoming "resistant." HIV that is resistant can make your medications less effective.

This means you have to be certain that taking your medications will become a central part of your daily life. Be honest with your HIV specialist about anything that may make it more difficult for you to take all of your medications on time. If you have a case manager or a counselor, talk with them about this important issue as well.

Without a doubt, the commitment to taking HIV medications will be challenging. However, you have a good chance of keeping HIV under control with the very first combination of medications that works for you. If this combination successfully controls your HIV, and if you take each and every pill prescribed, you may not have to change medications for a long time.

What if you aren't always able to take all your medications on time?

This may cause your first combination of medications to fail. If this happens, it can get harder and harder to keep HIV under control with each new drug combination.

So it's crucial to identify a combination you can stick to, before you start treatment. Here are some things to consider:

Your Medication Schedule Shouldn't Be too Complex

One thing is certain: Taking medications daily will change your life. Suddenly, you'll have new responsibilities. You'll always have to be aware of the time, your schedule and changes in your routine. In some cases, you may have to schedule taking your HIV medicine around meals or take it with or without certain foods. You'll have to remember to take your pills with you when you go on vacation, go away for the weekend or go out at night. Even if you are depressed or busy, you will still have to take your medications as prescribed every single day. So, before you begin HIV treatment, you must ask yourself: "Am I really ready

Plan How You Will Deal With Side Effects if They Occur.

All medications can have potential side effects -- even aspirin. Not everyone experiences side effects from HIV medications, which can range from mild to severe. Because you really want to give this first combination your best shot, talk to your doctor and read about the 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, but to choose medications whose possible side effects you can manage.

Your Surroundings and Your Mental Health Are Critical

If you are feeling depressed, using recreational drugs or living on a friend's couch, it may be unrealistic to assume you'll be able to take all 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 a lot to have friends, family, a support group or a therapist you can rely on while you are on a treatment regimen -- especially at the beginning when you are still adjusting. Doctors have not yet discovered a single combination of HIV medications that's best for everyone. Each combination has its advantages and disadvantages. The U.S. government issues regularly updated HIV treatment guidelines for health care professionals. As of January 2008, the guidelines made the following HIV treatment recommendations for people who are starting on their first HIV treatment combination:

Sustiva plus either Epzicom or Truvada Atripla (this is a combination pill of Sustiva plus Truvada) Reyataz and Norvir plus either Epzicom or Truvada Twice-daily Kaletra plus either Epzicom or Truvada Twice-daily Lexiva and Norvir plus either Epzicom or Truvada Each of these treatment combinations include at least one drug from two different types, or "classes" of HIV medications. Each class of medication stops HIV from making copies of itself at a different moment in its reproductive cycle. The following are the five classes of HIV medications:

NRTIs (nucleoside reverse transcriptase inhibitors) NNRTIs (non-nucleoside reverse transcriptase inhibitors) PIs (protease inhibitors) Fusion inhibitors Integrase inhibitors You and your provider will consider many issues before deciding on a treatment combination, including:

Your lifestyle Which treatment regimen preserves your future treatment options How powerful a combination it is What side effects it can cause Other illnesses you may have (such as hepatitis C), as this can affect which HIV medications are best for you.You've made the commitment to begin treatment and settled on your first HIV medication regimen. To ensure that your meds keep working, you'll need to take your doses on time, every time. But there may be challenges waiting to trip you up, including:

Side effects Pregnancy Depression, drug addiction or other personal problems Forgetting to refill your prescription Illnesses or injuries Family emergencies or travel Getting tired of taking meds every day Whatever the reason, and however hard it may be to talk about it, it's extremely important to bring up the problem with your HIV specialist or case manager before the problem interferes with your med schedule.