Where Are They Now?
Whatever happened to Compound Q and
the rest of them?
by Sue Saltmarsh
Remember Compound Q? AL721? Did you ever grow a Kombucha mushroom in your basement and pass a “baby” onto someone else?
In the process of settling into my new position on the staff of Positively Aware, I’ve had the pleasure of reading the very first issues of TPA News, from which PA evolved into the international publication it is today. Definitely “low-tech,” this grassroots newsletter was, at the time of its inception, one of the very few sources available for information on the treatment of HIV, much of which was what would now be called “complementary” or “alternative.” Like indigenous cultures throughout human history who found themselves facing the invasion of new germs, viruses, and diseases, early HIV-fighters turned to Nature, ancient traditions, and innovation to arm themselves against this disease.
As an herbalist in 1992, just starting to work with HIV-positive clients, I was firm in my conviction that if there was ever to be a cure, it would be a combination of botanical/natural and pharmaceutical, the most perfect, harmonious marriage of science and Nature, and the scientists, herbalists, nutritionists, and docs would work together in altruistic efforts to create that cure. Yeah, sure! I proceeded along the course of that conviction until I could no longer deny that The Cocktail was here to stay, so effective in controlling the virus and so profitable for the pharmaceutical companies that no further investigation of herbs, vitamins, minerals, and other natural substances would occur—at least not here in the U.S. In Europe, India, South America, Asia, even Israel, where capitalism does not have the stranglehold on health care that it has here, research into these kinds of treatments existed before HIV/AIDS and goes on to this day.
I thought it might be interesting to find out whatever happened to a handful of these early treatments. A self-admitted Luddite when it comes to computer literacy, I got some tutoring on how to do Internet research (thanks, Brad!) and, while Jeff and Enid were soaking up information at CROI, I gave myself over to Google.
Remembering my first days at the AIDS Alternative Health Project, I started with Compound Q (or GLQ223), an extract of Chinese cucumber that many of my clients had taken. The fact that it had “toxicity issues” didn’t seem to deter anyone from trying it and, indeed, there was a wave of controversy involved with the study of its effects. As federally-approved Phase 1 toxicity trials were taking place at San Francisco General Hospital Medical Center, Martin Delaney and his Project Inform activists were consulting with doctors to design a protocol for an underground trial, thus challenging the FDA’s usually slow process for testing urgently needed, potentially life-saving drugs. Preliminary results of the “guerilla” trial concluded that, while many of the trial’s volunteers showed a marked decrease in activity of HIV, there were also those who suffered adverse events and Compound Q could not be considered a cure. Seen through the lens of historical perspective, perhaps the most important result of Compound Q’s short-lived fame was the pressure Delaney and other activists were able to put on the FDA, which now has accelerated approval procedures that allow promising drugs to get to the people who need them the most.
Next on my list was the fungus known as Kombucha mushrooms. Benefits included boosting the immune system, increasing digestion and appetite, and improving skin and nails. This was taken in the form of a drink made by adding a pancake-shaped mass of bacteria and yeast to tea and sugar. The mixture ferments to produce the liquid that is imbibed. Even though these things were gross to look at and the taste was definitely an acquired one (I tried it once and had to spit it out!), there was a certain positive psychological effect in that, similar to people passing on their sourdough starter to friends, networks of people were formed that exchanged “babies” used to start their own mushrooms. This coming together of community may have been the best result of the Kombucha phase, since the home grown variety later had toxicity of its own, including instances of anthrax contamination, metabolic acidosis, and lead poisoning (from being brewed in a ceramic pot painted with lead-based paint). There is now commercially brewed kombucha, much safer, standardized, and popular for its probiotic properties, including certain bacteria known to have beneficial effects on digestion. Dr. Brent Bauer, director of the Complementary and Integrative Medicine Program at the Mayo Clinic, believes it may have legitimate value but says, “My own philosophy is, we better wait for clinical trials.”
Could there finally be that convergence of the scientific with the natural that I used to dream about?Egg lecithin
In the early editions of TPA News, there was much discussion about egg lecithin, also known in commercial form as AL721. First available in Israel, AL721 was a combination of three lipids, derived from egg yolks, which purportedly made cell receptor sites resistant to viral attachment. Anecdotal evidence existed in abundance, citing almost-miraculous improvement in T-cell counts, cessation of diarrhea and weight loss, great improvement in skin conditions and no more fevers or night sweats. So what could be the problem with this, I wondered?
As it turns out, AL721 was licensed in 1985 to Praxis Pharmaceuticals, and in a report from September 1985, Praxis believed it would be at least four years before the FDA would consider allowing any commercial sales. According to AIDS Treatment News, January 1986, “clinical tests of AL721 against AIDS are being planned, but have not received final approval.” As far as I could determine, those trials never took place and nothing further has been heard about AL721. In the process of researching it, I found several instances in different AIDS publications of people sharing their recipes for homemade AL721. Perhaps, like Kombucha, it provided a solidifying of the HIV/AIDS community. AIDS Treatment News called for accountability in what it called “a major failure of public policy in the AIDS epidemic—lack of commitment to modify business as usual when necessary to save lives.”
Just as I began to resign myself to cynicism about the impossibility of a pharmaceutical/natural treatment ever being developed, I read a posting on our community forum (thanks, Elise!) about a 2007 study of the effects of selenium on HIV. It seems to indicate that when selenium levels are increased, viral loads tend to be lower and the number of CD4 cells increase. Researchers from the University of Miami conducted a double-blind, randomized, placebo-controlled trial of selenium supplements in 262 patients with HIV. Patients were randomly divided into two groups to take either a capsule containing 200 micrograms of high-selenium yeast or a sugar pill daily.
Nine months later, each patient underwent a comprehensive physical exam, and results showed that the patients taking daily selenium supplements had lower levels of the virus in their bloodstream and increased T-cell counts compared to patients who took a placebo pill.
Anecdotal evidence abounds about the benefits of selenium, starting with the simple geographical fact that the nation of Senegal, with its unusually selenium-rich soil, has only a 1.77% incidence of HIV while its neighbor, Zimbabwe, which has low levels of selenium in the soil, has a 26% incidence. There is an almost identical pattern of risky sexual behavior in both countries.
There is an ongoing five-year, double-blind study on selenium being done in Africa which will come to an end this year. Could it prove that augmentation of this mineral for HIV-positive people would make it possible to decrease dosages of the more toxic pharmaceutical drugs now being used? Could there finally be that convergence of the scientific with the natural that I used to dream about? Obviously, more studies like the African one need to be done before any such marriage of selenium and anti-retrovirals is cemented and becomes an accepted treatment option.
Little glimmers of hope appear in other areas as well. There is currently an ongoing study of a Chinese herbal blend, ViraPhyte, which could serve to delay the need for drug treatment, as well as to provide a “bridge” therapy for those experiencing treatment interruptions. In 2006, FIAR (the Foundation for Integrative AIDS Research) helped investigators Fred Blair and Mark Kuebel to benefit from a grant from NCCAM (the National Center for Complementary and Alternative Medicine), a division of the National Institutes of Health, to enable clinicians in a non-pharmaceutical system of medicine to research their methods of treating HIV. George Carter, of FIAR and the New York Buyer’s Club, confirms my belief that research on alternative/complementary therapies in the U.S. must find a way to conform or compare to the scientific model of double-blind, placebo-controlled, randomized studies before they will be considered seriously by the scientific and medical communities. Though the study is progressing slowly due to several challenges (New York readers, consider participating!), perhaps the work that these men do will blaze the trail for a future melding of allopathic and alternative methods. I remain ever hopeful.