Treatment Review No. 10; March 1994
Ken Fornataro

Some people who have recently become infected with HIV get sick soon after finding out about their HIV status. They have low T4 cell counts. Some strains of HIV are worse than others. Becoming HIV positive today is not the same as it was a year ago. Being HIV positive does not protect you from becoming infected with another strain of HIV, as well as other nasty viruses. The virus that you contract may not be last year's model.

When AZT was first being tested in people with AIDS there weren't any approved treatments for AIDS. Few people, including doctors, believed women could have AIDS. You couldn't choose between AZT, ddC, ddI or d4T. You had to take the drug every four hours - no matter what. It was not possible to get AZT any other way besides joining a clinical trial. If you got in the trial you could not take any other drugs to prevent an HIV-related disease like PCP pneumonia. There were no approved preventive treatments for PCP, anyway.

In the past few years nothing has changed about the way some people feel about AZT, or drugs in general. Some people say they don't believe in AZT. They say that they hate the drug. Despite the studies that clearly show that AZT does work in people with AIDS, most people aren't getting - or don't want to hear - this message. They just hear that some people experience side effects from the drug, or that someone who knew someone who took the drug died shortly after taking it. Yes, that happens sometimes. It almost always happens when someone with AIDS doesn't start any treatment at all.

People who say that they don't want to take AZT because it is a toxic drug, also say that they don't want to take any drugs because they are all toxic. They often use this reasoning as an excuse to not take Bactrim or Septra or dapsone to prevent PCP pneumonia.

I understand the anger and frustration. No one wants to take drugs that may have side effects. No one is eager to be experimented on. It's about knowing the truth and not listening to things that aren't true. We assist people to tell the difference between the two. Our goal is to help people find out what they need to know in order to make decisions, and to help them by sharing the knowledge that we have gained by helping other people who have been in the situation they are in now.

Although most people call The Network to ask about an approved or experimental drug, they also ask for something else - someone to talk to about how taking a drug will affect their life, including how they are going to talk to their friends, or lover, or family about the fact that they are HIV positive or have AIDS, and they need treatment.

Increasing T4 cell numbers in and of itself does not translate to improvements in health. Carlo (interviewed in this issue of Treatment Review) has had low T4 cells for many years. He is very healthy at this point. Others with higher T4 cell counts are sick. There is more going on than just the number of T4 cells in the blood. It is especially important to look at the long term effects of a drug. Three months of good health - or higher T4 cells - is a good thing. Six months is even better. One year is great, especially if there is a better quality of life. What is of most concern is the possibility of a crash.

Some - although not all - of the people who decided to deal with HIV head on, regardless of how long or how difficult it was for them to deal with some of the realities of AIDS, are still alive today. I know that starting treatment such as PCP prevention is why they are alive today. Most of them say they are happy, although somewhat short of time to do all the things that they want to do. Things are getting better. Scientists who just a few months ago were walking around in a desperate state have begun to regain hope. After the International Conference on AIDS was held in Berlin, many people were really depressed. But the list of promising drugs has grown. New work is being done in laboratories and clinics around the world. IL-2, IL-12, protease inhibitors, U90, growth hormones, anabolic steroids, and anti-oxidants may be effective treatments.

Every time someone with AIDS or HIV chooses to fight, and to fight alongside the friends, family and health care providers who are on their side, everyone with AIDS, as well as the quality of the human race, benefits.

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