The Constant Survival Battle and T-20
Staying alive with HIV has been a thirteen-year battle for me. My story is one of survival in an imperfect, yet encouraging era that has produced some powerful drugs that have kept thousands alive.
In 1988 I tested HIV positive at an anonymous clinic in Oklahoma City. One year later, in the turbulent and desperate years of the AIDS epidemic when street demonstrations were as common as the funerals of many of my friends, I first began taking anti-HIV drugs. I knew I had to begin treatment or else end up like my friends. With only one drug available at the time, I began AZT at the 600 mg a day dose.
Along with other AIDS activists, I was constantly fighting for more and better HIV drugs in order to buy time until the cure. As AZT showed that it wasn't the panacea everyone had hoped and my T-cells reflected its ineffectiveness, I added new drugs as they became accessible either through clinical trials or the underground buyers' clubs. I rarely started a new drug that was not some kind of experiment. I used up every individual drug and combination possible. I spent lots of money on vitamins and the latest alternative therapies. The antivirals I chose were at least slowing the devastating progression of HIV, but my T-cells were falling. Fortunately, I never got sick with an opportunistic infection but was severely wasted by 1994.
In those early days, few people understood how much HIV could mutate, changing itself so that the drugs wouldn't work. Few knew how important adherence was. We learned the hard way -- through experience -- that combination therapy was the best way to slow the virus. Adding a new drug to another previously used one would prove not to be the best road to take. We learned from our mistakes, and some people paid the ultimate price.
I continued to fight for the latest treatments and watched my viral load spiral out of control and my T-cells slowly inch towards single digits. But today, even though I have technically failed almost every approved drug, I'm a long-term survivor. Nobody is sure why I'm so lucky given that my drug resistance pattern is off the map, except that I have truly fought for access to every HIV drug I have taken. For years, AIDS activists pushed for ethical and quick research and development, and then made sure the drugs got into the hands of thousands who desperately needed them in order to slow the ravage of HIV.
In 2000 I moved to Chicago to be with my boyfriend. Twelve years into my HIV disease, I once again found myself scrambling for the next drug. My T-cells were perilously close to zero! I knew I needed a powerful new drug capable of controlling my viral load, which was climbing again. I was following the development of T-20, or Fuzeon, the first drug in a new class, fusion inhibitors. I attended numerous meetings with the T-20 working group that helped Trimeris, the company developing the drug, to make sure development went quickly and ethically. I didn't qualify for the early clinical trials of T-20 because I was a "salvage" patient and the studies had strict entry criteria that I didn't fit into. Finally, the working group got Trimeris to design a new study that would benefit people like me. Again, I found myself fighting to stay one step ahead of the game.
One of the sites for the new trial was at Northwestern in Chicago, just up Lakeshore Drive from where I live. I had a hard time getting any study coordinators to return my calls. Due to excessive bureaucracy, it took a full year of harassment before the trial was ready to screen people. Meanwhile, my T-cells continued to drop and I was losing weight, having problems with my skin and having constant sinus infections. I was frightened again, remembering all my lost friends.
Finally the trial opened and I was screened. Then you guessed it -- I was randomized to be in the control arm, still not receiving T-20. But after twelve weeks, I was rolled into the T-20 arm, taking it along with new drugs, including other experimental ones. The study required me to construct the most powerful regimen to add to T-20. Believe me, I needed all the help I could get! I managed a mega-HAART regimen with seven antivirals, including T-20, and for the first time in my years of living with HIV, I reached undetectable! ... for one week.
It was no picnic injecting T-20 twice a day. I had experience with needles, having used human growth hormone and testosterone replacement for years. And I had probably been stuck a thousand times giving blood for research and while monitoring my health. But I didn't expect the painful injection site reactions from the drug, sometimes resulting in lumps the size of golf balls that were so painful that I couldn't lie down. As with many issues living with HIV, however, I've learned to deal with problems that arise. Talking to other people in T-20 studies has helped me rectify some of the issues with injection site reactions, learning where on my body to inject and techniques on the best way to do it. The injections are no longer as bad as they once were.
After that first week of being undetectable, my viral load slowly started climbing up again. Having been on T-20 for ten months now, I'm considered a T-20 failure. But I'm in a balancing act of sorts. My virus level is around 40,000, about what it was before I started the decline a year before I began T-20, and my T-cells are hovering at 120 where they were in the late nineties. But, all in all, things aren't so bad. My clinical health is excellent, I feel good, and my weight is back up to normal and stable.
If anything, I believe T-20 is adding to a moderate virus control, keeping me stable as the other drugs I take are probably no longer effective. Without T-20, I believe my HIV levels would jump to the sky. Despite the twice-daily injections, I've decided that the benefit of using T-20 outweighs the risk. So once again, I'm coping with yet another new drug in a clinical trial, maintaining, and still waiting for a cure.
Matt Sharp lives in Chicago. He is an AIDS treatment activist with the Coalition for Salvage Therapy and AIDS Treatment Activist Coalition (ATAC).