Going to Extremes to Stay Alive
From Study to Study Until the Cure
In 1989 I took care of a lover who was struck by one life-threatening infection after another. I watched as he withered away and eventually lost his mind and died a terrible death. I was diagnosed then too, but was lucky to never get sick. It was a wretched time when all we knew how to do was be angry, stay mobilized and simply live to the next day.
There was only one drug available to fight HIV, AZT, and we all watched as people took it and still died. We resorted to try anything we'd heard that might be helpful. I took AZT and then I heard about a drug that was made on the underground called ddC (now under the brand name Hivid).
I ordered it from a San Francisco AIDS Buyers Club called Healing Alternatives because there were no clinical trials in Oklahoma where I was living at the time. Now we know ddC is probably useless, but then it was only the second anti-HIV drug. We took what was available even though we knew little about HIV and how to treat it.
I decided to move to San Francisco, the hub of the epidemic, where I would have cutting edge HIV care and get access to clinical trials that were enrolling for early experimental AIDS drugs.
All my friends who were not dying signed up to be guinea pigs in these studies since we were desperate to try anything to stay alive. Of course, some people were skeptical of being in studies. Everything was new -- we didn't have viral load testing then!
But I was determined that HIV wasn't going to kill me, so I got access to new drugs through the clinical trials process. It was the safest way to have a chance against HIV. For me, it was a survival strategy. Be as proactive as possible and buy time!
But it wasn't just that. I also wanted to help find some answers for all people living with HIV and AIDS. I knew that together, for better or for worse, we could get the answers we needed.
In 1993 one of the first studies I enrolled in was at Stanford University, which is about 40 miles south of San Francisco. I remember many early morning drives down the foggy northern California highway winding my way to the elegant campus, known for its medical proficiency. In many ways, I enjoyed the drive even though with each trip I saw my CD4 count drop; the new protease inhibitor Invirase was not stopping my HIV progression. In fact, I was merely adding a new drug on to a failed drug, which essentially stair-stepped me to more drug resistance.
We all now realize that using drugs in this way -- one new drug on top of older used drugs -- was a recipe for disaster. There are many survivors walking around today who have no options because of the days of sequential monotherapy, but there are also thousands now six feet under. At that time I was losing a friend a week to AIDS, yet some of my friends from those days are still kicking!
The University of California at San Francisco (UCSF) put out an updated clinical trials guide that I combed through at every opportunity to find another study to enroll in. I also became involved with the university's community advisory board (CAB), one of the first in the U.S., so I could not only gain access to information about clinical trials at UCSF, but to also learn what new treatments were being studied through the federal ACTG or AIDS Clinical Trials Group (now called Adult AIDS Clinical Trials Group).
I even began attending the national group meetings where people with HIV and AIDS activists, mostly from ACT UP, forced their invitation. It was a steep learning curve for me, learning the science of HIV and at the same time demanding new drugs and better inclusion into clinical trials from the scientists and the feds. We made significant inroads into improving HIV research.
In 1995, I was able to qualify for my second protease inhibitor study with Crixivan, where I saw some good initial results. But again, since I was only adding essentially one new drug to older ones, I was building further drug resistance and soon was considered a "drug failure." (I didn't fail the drugs, the drugs failed me!)
Little did I know that Crixivan did not work very well after first use of Invirase. That information was learned through clinical trials.
By then studies for me were few and far between, and I felt driven to try alternative therapies being used in the community, including a smuggled drug called Compound Q.
The amazing thing about this drug was that it was administered at underground IV clinics at private homes. Clinical trials of Compound Q were enrolling but soon shut down because people were dying in the studies from the drug. I felt empowered taking this risky drug, but it had no effect.
In 1994 I started losing a lot of weight and was diagnosed with wasting syndrome. One activist friend of mine attended a medical conference where he found tucked into the program book a new therapy called human growth hormone (now called Serostim).
After months of activist persuasion, the company agreed to do wider studies, and a few of my friends who were also wasting away enrolled in the trial. After a placebo period using injections once a day, I saw I was not gaining any weight, but was eventually allowed use of the drug in a second phase of the study. Sure enough, I gained almost 10 pounds in one week while on the drug.
I still take Serostim, at a lower dose every day, not only to maintain my health, but to decrease the visceral fat around my stomach.
I took an outreach job at the San Francisco General AIDS Clinical Trials Unit (of the ACTG) in 1996. I went into minority communities talking about my experiences in clinical trials, how they had helped me and trying to encourage people to get into studies.
In talking with people I got a sense of dismay about enrolling. "Why should I get in a study? I'm doing just fine." Or, "I'll never be in a study and risk my health." Or, "as an African American man, I wouldn't dare be in another Tuskegee experiment."
It was a frustrating experience for me as I had seen the studies help so many people, but it also made me see the flaws in recruiting for AIDS studies. Much education needed to be done, but without people for the studies I knew we were doomed. The same paradox holds true today for many of the same reasons.
I was feeling pretty good even though my virus levels were high, but I was beginning to name my T-cells. No new protease inhibitors became available then, but I was able to enroll in an expanded access program at my doctor's office to a new drug from a different drug class called Rescriptor. It also proved to not help much as it was simply adding a drug to a failed background regimen.
We did find out that Rescriptor increases levels of some protease inhibitors, which I was also using at the time. We also learned that by using up this drug I developed cross-resistance to a newer and better drug called Sustiva that became available a few years later.
In 1997 I had the opportunity to do something real daring since I was essentially a ticking time bomb. I flew all the way across the country to join a clinical trial.
I was one of only a few HIV-positive people who signed up to receive a thymus transplant in a research center in Burlington, Vermont. The thymus is responsible for educating T-cells, telling what foreign invaders to target. The thought was that transplanting thymus tissue would help stimulate my weakened immune system.
Even though the study was a very preliminary look-see if this technique would work, it did involve opening my abdomen through surgery, and gave me dangerous transplantation drugs (they suppress the immune system) -- all procedures that had not been tried in HIV before. This was not a simple drug trial!
I flew back to San Francisco surviving the procedure, but will never know if there was a benefit to receiving the transplanted tissue. I was at least alive and empowered by doing something so daring to try to prolong my life.
There was no new clinical trial or therapy for the next several years that I would qualify for. I had tried almost every approved drug and none were working. Even though I was fairly stable, I knew according to my falling T-cells that it would only be a matter of time before I became susceptible to serious infections.
I had been meeting with a small company developing a compound in a new class of drugs called fusion inhibitors. This drug was T-20 (now called Fuzeon). I followed development of the drug before it ever entered into clinical trials and waited for the right time and place to get access.
Since I was moving to Chicago in 2000, I knew that Northwestern University was going to be a site and I pressured the clinic to start the study. After a frustrating several months when I began experiencing poorer health and falling T-cells, the study opened and I was enrolled into a placebo arm. About two months later, I was given access to the drug along with a background of five other drugs and reached undetectable virus levels for the first time.
Fortunately my virus numbers remained low and I've been injecting myself now for over two years, twice a day. The injections can be painful, but the drug has essentially been able to hold off virus reproduction, keeping it lower than ever before. The study eventually closed and the drug is now widely used.
I had been living on disability at the time, but realized that I now had the energy to hold a job again. This in spite of the fact that under the guidelines of the trial, my experience was considered a failure! And yet, I had been given a new lease on life. I was surviving and thriving with HIV.
I likened my virus to Swiss cheese, holey and not able to reproduce, but I still needed a better drug and looked for another study. I then enrolled in a late-stage trial of a new protease inhibitor, tipranavir, that is supposed to work against viruses resistant to older drugs. By adding tipranavir to my regimen of T-20 along with two nukes, I have had the lowest viral load ever for six months now. I am taking fewer pills than before, and my overall health and vitality is excellent. All this after 16 years of living with HIV!
So now I watch for another moment of opportunity that will afford me with better drugs. I long for a cure but will settle for buying a little more time as usual. The prospects are good for the future, but the studies will need to be inclusive and be able to answer the questions related to real world HIV.
As this issue goes to press, I'll be trying Bio-Alcamid in Tijuana as a cosmetic filler for my face. When the doctor offered to do a free procedure for Positively Aware and provide the material, I jumped at the chance.
I can't see myself sitting around and doing nothing, just waiting. I have probably been in dozens of studies that have led me to where I am today, with mostly positive, but some negative, results. I was privileged, educated and privy to the latest information, and I am lucky to be a survivor.
Barring ongoing pharmaceutical development and enrollment issues, I see no reason why others cannot have the success I've had with clinical trials. Sure, times have changed since I was traipsing around looking for the appropriate study. But it just takes a little fortitude, and good luck -- but not one without the other!