Treatment Review No. 12; June 1994
Ken Fornataro

Luis wanted to know everything he could about each drug, vitamin and alternative therapy that he was considering taking. He participated in five different clinical trials of experimental drugs. Each time he had high hopes that the new drug would work, and that he would get better. He discussed his options one by one with his doctor. Luis was a brave man. He knew that he was taking chances, but he would have been the first one to be proud that he had helped to find an effective treatment for AIDS.

Despite the fact that researchers do not know about all the possible side effects of experimental drugs - which are sometimes mild, but other times severe - people like Luis decide to participate in clinical trials. He stayed informed, and made the decisions he needed to make. This is called Informed Consent. It is an ongoing process.

There are strict guidelines that researchers must follow, although there is never a guarantee that an experimental drug will work as a treatment, or that it is safe to take. The side effects of new drugs that are being studied are not always known. Before you start a treatment, find out everything there is to know about the drug, how it is being studied, the risks and benefits.

It is important to remember that any drug - even drugs that are already commonly used by doctors - can have side effects. Although the side effects are very real when you experience them, they can sound much worse than they usually are. For example, the drug aspirin can cause stomach bleeding and damage an important immune system cell called platelets. But most people don't experience these side effects when they take aspirin. Informed consent means that you know all the possible side effects that might occur, even if they happen only rarely to a few people.

The number of herbs, vitamins, and other substances that are now being advertised and promoted as alternative treatments for AIDS and HIV has grown rapidly in the last few years. Different AIDS newsletters and magazines have featured articles on how to choose the best alternative treatment. The number of people who claim that one or more alternative treatments has cured them has also grown very quickly.

The reason for this rapid increase in both treatments and claims for their usefulness is simple - there are not enough well-tested, safe, and effective treatments for AIDS and HIV-related conditions. Meanwhile, we still have to make decisions about treatments.

The article on the back page begins a series on alternative therapies. The specific focus will be on herbs and herbal therapies that may prove to be of use to people with AIDS and HIV. All of them are readily available - assuming that you can afford to buy them - and have been used with relative safety by human beings. We caution, however, that AIDS is not like any other disease, nor have ANY of these herbs been clearly shown to be effective.

AIDS is a very complex disorder of the immune system. The typical phrase that is often used by herbologists is, "This herb stimulates the immune system." This may be the opposite of what someone with a damaged immune system needs. Although some cells of the immune system work when they are stimulated, activating them may also cause HIV to spread.

Causing an opposite effect on the immune system may also be helpful. Dramatically suppressing the immune system, as with certain types of steroids or "cooling" herbs, may lead to a rebound activation of the immune system that leads to better suppression of HIV and other infections.

We are often mislead by the term alternative. Because we would like to believe that there are, in fact, safe, effective, non-toxic and accessible (as in inexpensive), the word alternative is applied to many things. This does not necessarily mean that they do any of the things we would like them to do. Alternative treatments can be very expensive, may produce little if any real results, and can sometimes cause severe side effects. Your best bet is to look at all treatments the same - whether they are called alternative or traditional. Drug companies sell drugs to make profits. But the profits are also used to make money to pay for the research and other costs of developing the drug in the first place. It costs money to make something. Through expanded access programs, some drug companies will provide drugs to people who have no insurance or can't afford them.

Most drugs that are tested in clinical trials don't ever make it all the way through to being approved as treatments. Only one in ten drugs makes it through the entire process. Imagine the huge amount of money - as much as 200 million dollars - that it costs to develop a drug that does not work. That cost is one reason why most alternative treatments don't get tested in clinical trials. On the other hand, a drug that does make it through the clinical trial process can end up making a lot of money for the company that develops it. This would be true of a treatment that is referred to as alternative as well.

Why aren't the companies who make and sell alternative treatments willing to put some of their billions of dollars of profits into clinical trials so that we can have a clear understanding of how the treatment works, or if it works at all? Perhaps because, if only 10% or their products made it through the clinical trial process, some of their profits might disappear when people stop buying treatments that haven't been proven to work.

940601
ATR01206

Copyright © 1994 - AIDS Treatment Data Network. If you want to copy, reproduce or excerpt this information, please give us a call at (800) 734-7104. This helps up to keep track of where and how this information is being used. You can also Email us at network@atdn.org  http://206.179.124.69/network/index.html