AIDS: Finding Better Treatments With Your Help

This brochure tells you how doctors test new treatments for AIDS - and how people with HIV can help.

What are Clinical Trials?

Doctors have learned a lot in a short time about how to help people living with HIV. But more and better drugs are needed. Research studies known as clinical trials are a key step in finding them.

A new drug goes through careful testing before doctors use it to treat people who are sick. First, it is tested in labs and in animals. If these tests show promise, people begin to take it. When a drug is tested in people, the test is called a clinical trial. These tests show whether a new drug is safe in people and whether it helps them to get better.

Clinical trials Have Already Helped People With AIDS

Not long ago, we had almost no drugs to treat people who have HIV. Today, we have drugs that

• help people who have AIDS, or who have some signs of AIDS, live longer;
• help people who have HIV, but who are not yet sick, stay well longer; and
• treat or prevent problems caused by infections related to AIDS, such as pneumonia and blindness.

These drugs were proven to work because people with HIV helped test them.

"Today, our HIV research studies look at the problem from many angles. Some trials are studying ways to control HIV and thus prevent or delay the onset of AIDS. We are also trying to find better treatments for the infections and cancers that attack people with HIV. Other studies are testing drugs that strengthen the immune system, so that the body may fight off these infections on its own." Anthony S. Fauci, M.D. Director, National Institute of Allergy and Infectious Diseases

How Can You Help?

Most studies today compare a new drug or set of drugs with the one now being used to see which treatment works better.

Study doctors are looking for men, women, and children to help test new drugs for HIV. You may want to think about joining a study if you:

• have HIV;
• have some early symptoms of AIDS (sometimes called ARC), such as fever, wollen glands, or diarrhea;
• have AIDS.

"Being in a study means making some sacrifices, keeping up your end of the bargain. It's worth it to me. But you should get all the facts before you decide." Maria AIDS Patient

Clinical Trials: Pros and Cons

Pros

• People in a study may be the first to be helped, if a new drug is shown to work.
• People in a study get very good health care.
• Some costs are paid.
• Joining means taking action to try to help yourself.
• You have a chance to help others with HIV.

Cons

• A study may involve a lot of time, tests, and changes in your schedule.
• The new treatment may not work, or it may not help you as much as it helps others.
• The treatment may be harmful; it could make you get worse instead of better.
• The drug may have side effects that make you feel worse.

Many studies are done in clinics at large hospitals. Most people who take part live nearby. Others move or travel to the clinics to receive their treatment. In some cases, people can also join research studies at smaller clinics near where they live.

All studies have rules about who can take part. Before you can join, you will first have some medical tests to be sure you are right for the study.

Your Doctor Can Tell You More

Where should you go to find out more about studies that you might join or to get more information about HIV?

• Your Doctor or Clinic. This is the place to start to learn about studies in your area.
• AIDS Clinical Trials Information Service. A call-in service where trained staff will tell you about studies for people who have HIV. Your call and your name will be kept private. You can ask for a list of new drugs being tested, where the trials are, and who is doing the studies. English and Spanish are spoken. Call toll-free 1-800-TRIALS-A (874-2572). Lines are open Monday through Friday 9:00 a.m. to 7:00 p.m. eastern time. The
• AIDS Trials Information Service. You can find out about government-approved treatments for HIV by calling 1-800-HIV-0440. For deaf access, call 1-800-243-7012. The service is open Monday through Friday, 9 a.m. to 7 p.m. eastern time.
• The National AIDS Hotline. The hotline can give you basic facts about AIDS as well as tell you about AIDS support groups, clinics, and other help you can get in your area. Call toll-free 1-800-342-AIDS (2437). Spanish-speaking callers can dial 1-800-344-SIDA (7432). For deaf access, call 1-800-AIDS-TTY (243-7889). Lines are open 7 days a week, 24 hours a day.

"In my research study, the doctors and nurses are HIV experts. They give me the most up-to-date care. And the whole staff is warm and caring." George AIDS patient

Prepared by:
Office of Communications and Public Liaison
National Institute of Allergy and Infectious Diseases
National Institutes of Health
Bethesda, MD 20892

Public Health Service
U.S. Department of Health and Human Services
March 1997

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