The Bay Area Reporter - June 13, 1995
G'dali Braverman ACT UP/Golden Gate Writers Pool

If you're looking for info on treatments, and don't want to be bogged down with lots of Xeroxed material to carry around during the day, there are several organizations that will probably have friendly people on hand to chat about whatever choices are confronting you. Take the opportunity to seek out ACT UP/Golden Gate, Project Inform, the Healing Alternatives Foundation, and the Community Consortium. Tidbits of info can be a great entree into more serious shopping for experimental treatments, and few places offer as many experimental trial options as San Francisco.

Something that may interest both the well-seasoned clinical trial shopper and the novice trial peruser are studies that don't necessarily involve trying any new or experimental treatment at all. Lots of people still struggle with the idea of trying cutting edge therapies, especially since they may feel that they only have a vague understanding of how HIV is affecting their own physical condition (one's individual pathogenesis). If you subscribe to the "no news is good news" philosophy than you can probably go into a "skim and scan mode" for the rest of this article. If you're the kind of person who prefers to "know more," keep reading.

For those of you who are switching or adding antiretroviral therapies you might consider the currently enrolling Community Consortium study that offers you five free bDNA viral load tests. By September, ACT UP/Golden Gate and The Healing Alternatives Foundation will offer a similar study, with six viral load tests over the course of ten weeks. Those tests standardly run $200 each, and some insurance plans - like Kaiser's - refuse to offer such tests. Knowing the level of virus in your blood, as well as doing standard T-cell blood work, allows you and your doctor to make more regular and individually tailored treatment decisions. By participating in such studies you help to validate new measures of HIV and improve the standard of care for the community.

There are plenty of other opportunities to learn more about your body while contributing to the advancement of HIV research, without committing a lot of time or energy. One such opportunity is an SFGH study that simply requires that patients at any and all stages of disease give ten minutes of their time to get a CT-scan (a glorified X-ray) of the thymus: that's that lovely organ that serves as a T-cell factory.

By comparing the effect of HIV on the thymus glands of people at varying stages of disease we may better understand the potential role of immune-modulating therapies. Some related research is actually ready to roll, and would be rolling if not for recent FDA road blocks.

Other San Francisco-based studies that are pathogenesis-driven will be surfacing this year. Some of these studies may include lymph node biopsies or bone marrow biopsies. These are invasive and somewhat uncomfortable surgical procedures, but will offer us critical information about the effects of HIV outside the blood. Such information should be crucial to better understanding immune dysfunction and determining which therapies can be utilized at varying stages of disease.

For now, studies that may involve bone marrow biopsies only stand to offer more knowledge in advancing the field of HIV research. There is no immediate therapeutic benefit to patients. However, the potential to freeze off bone marrow stem cells for later use in gene therapy or cell stimulation/expansion therapy is promising.

Some of us are always bound to be seeking cutting edge research, with or without a potential therapeutic benefit being a component of an experimental study. As we find ourselves in an environment of ever-so-slightly improved standard of care, with just a few more choices every couple of years, it is essential that we continually remember that most of these therapies show only short-term benefit. We must not rest on the laurels of a handful of drugs. We must separate the skepticism we may have towards pharmaceutically-driven research and remember that there is research out there that is wholly unattached to the development and sale of a product.

The time that we offer, the surveys we answer, the test tubes of blood that we give, the biopsy samples which we consent to have taken - these are our investments in our future. So this Pride Weekend make it your business to learn more about your future in HIV treatments and research. Help us change the course of research so that next year we can be closer to "the celebration" we all seek. Happy Pride Week! Hope to see you at our booth!

ACT UP! FIGHT BACK! FIGHT AIDS!
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Always watch for outdated information. This article first appeared in 1995. This material is designed to support, not replace, the relationship that exists between you and your doctor.

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