When I was diagnosed with AIDS in 1991, I never dreamed I’d reach forty. This past summer I reached the age of fifty. It seems I have lived a long battle with HIV. Little has been easy about survival. It has taken a concentrated and impassioned effort to gain every piece of knowledge I could in order to stay ahead of a deadly virus, one that has a basic survival instinct not unlike my own. I am the consummate salvage AIDS patient with an ironclad will to survive.

AIDS drugs have changed the course of the epidemic in a relatively short time, and have played a huge role in my survival, as with thousands of others. My treatment history reflects AIDS research progress and pitfalls. Over the past 18 years my virus first became resistant, then highly resistant, and now what we call multi-drug resistant (MDR). Doctors use the same terminology in tuberculosis usually signifying a more serious condition, one that is difficult if not impossible to treat. In HIV the condition is problematic not only because it becomes difficult to treat, but because MDR HIV can be transmitted to other people. Fortunately, however, I have lived quite a long time with MDR HIV, and have found new treatment options that I never thought possible.

What I didn’t realize when I began HIV treatment was that I was putting together a recipe for disaster. The way we use antiviral drugs today had to be learned over time, and even though I was fortunate enough to gain access to the new discoveries, I was using them incorrectly. Each time I added a new drug to another older medication I was creating a more mutated virus.

For someone with MDR, finding a new treatment today is complex but not impossible. If anything, there is new hope now to treat those of us who are multi-drug experienced. My treatment history has been a roller coaster of decision making and considerable frustration trying to find effective drug combinations. In some ways it’s been like a long war waged against many improbable foes. I have had to consult with many doctors, haggle with drug companies, sustain risk through several clinical trials, and even get arrested in civil disobedience to gain access to drugs that have kept me alive.

But recently, my options have gotten better due to a resurgence in HIV drug development. Several new drug classes are showing promise and have reached final stages of development.

For years I have stayed alive on what is known as monotherapy, since I had to add one new drug onto the backbone of drugs I was already resistant to. It’s been the bane of my existence since the early days of my HIV treatment, trying to find two active drugs to work against my crafty and persistent virus. We know now that at least two active drugs are needed for people to have the greatest control over HIV replication.

Looking back, in 1989 I began treatment with AZT, now known as Retrovir. It was the only HIV drug available then but doctors did not know the right dose of it to prescribe. AZT is somewhat famous, being the cause célébré of an AIDS activist movement on Wall Street and at the FDA. I was one of many who started using it as monotherapy, thus starting my resistance cycle and mistaken treatment course of sequential monotherapy. But back then, it was all we had.

After using AZT for several months I gained access to ddC (Hivid, now discontinued) from an AIDS Buyers Club and began my first dual regimen, not understanding that I was only getting a small effect from ddC, if at all. I probably had developed resistance to AZT. This enabled my HIV to replicate, creating mutations to occur and a ride on my resistance roller coaster.

During the next few years of my treatment history, I tried a lot of complementary therapies, adding drugs as they became available. I took drugs like Videx and Zerit, adding each of them to whatever I was taking. So essentially I was building new mutations and using only one effective drug at a time. This went on for several years as I slowly watched my T-cells drop.

I gained access to Rescriptor, the first of a new HIV drug class called non-nucleoside reverse transcriptase inhibitors. That unfortunately was another one of my big mistakes. Newer drugs in the NNRTI class are more potent and easier to take than Rescriptor, but I needed this drug as it came first. So, I eventually became resistant. What we didn’t know at the time is that the drugs in the NNRTI class would be highly cross resistant to each other. If you develop resistance to one you blow the whole class.

I became very angry and frustrated at that time. I joined ACT UP and chained myself to drug company doors to demand better HIV drugs. As far as I was concerned, the government and research institutions could never move fast enough when everyone I knew was dying.

By 1994, HIV was having an effect on me. I was wasting, lost over 20 pounds, and began developing other symptoms. I was afraid. Wasting zaps your energy and does not give you much self confidence in surviving. Skull-like faces and “AZT butt”—severe loss of the buttock muscles, were noticeable everywhere in the Castro district of San Francisco.

Then human growth hormone saved my life in a double blind placebo controlled study, despite the fact that I received the placebo for the first part of the trial. I regained my weight and enrolled in the first protease inhibitor study of saquinavir (Invirase). The background drugs in this study were AZT and ddC—two drugs I had already used. So with saquinavir the only active drug, I was once again getting the effect of monotherapy. It was a big disappointment for me and I remained in search of something new.

Next I signed up for the Crixivan study and for the first time saw my virus levels drop. But again I had to use background drugs that I had used before, receiving Crixivan monotherapy. In no time Crixivan failed and my T-cells slumped.

I learned about research and the clinical trials process through my actual experience and with a sub-committee of ACT UP Golden Gate. A group of us held an immune-based therapies breakfast club on Saturday mornings where we would pore over the latest journal articles and hear from graduate students and researchers from Stanford and UCSF. It led me to consider my treatment course a little differently. Up to this point every drug had failed and I realized what I needed was something to boost my weakened immune system.

I joined a very progressive thymus transplantation study in hopes of restoring some thymus function, which plays an important role in the immune system. I was flown across the country and underwent an overnight hospital stay where thymus tissue was transplanted into my abdomen.

The thymus tissue was not rejected by my weakened immune system, still, despite the transplant, my T-cells continued their slow decline. I tried other new protease inhibitors as they became available and began “recycling” my medications, reusing past drugs I was most certainly resistant to. I was technically on HAART (Highly Active Antiretroviral Therapy), but it would probably best be described as only partially active for me. Whatever the strategy became, I luckily remained fairly healthy until late 1999.

As an AIDS treatment activist I had been invited to a community meeting with Trimeris, the company that discovered Fuzeon, then called T-20. It was one of the first community meetings of this new drug class targeting the point where HIV “fuses” into the T-cell. I was fascinated by the new concept and hopeful that someday the drug may work for me. It offered me and people like me who had developed MDR virus possibilities for a new option from a whole new HIV drug class. I followed T-20 development closely.

In 2002 I enrolled in the pivotal T-20 clinical trial at Northwestern, only after haggling investigators and Roche to get the study started. My bad luck landed me into the arm that did not receive T-20. But fortunately, the study design enabled me to roll over to receive T-20 after 24 weeks. After I started the drug my viral load went undetectable for the first time ever…but for just one week. I was resistant to the background regimen, so the T-20 was working alone, only to quickly develop resistance. Strangely enough I was as healthy as I could be and even started back to work.

My numbers started changing for the worse after three years on T-20; I was most likely resistant. I learned about studies of a couple of new protease inhibitors that companies claimed were not cross-resistant to the older protease inhibitors. One of those drugs was tipranavir—now called Aptivus.

T-20 and tipranavir plus my background regimen of Truvada enabled me to stay relatively healthy and with the lowest detectable viral load ever, but my T-cells unfortunately dropped below 100. For me all good things in HIV come to an end, but new drugs were on the horizon.

Studies began on two completely new drug classes, integrase inhibitors and co-receptor antagonists. These studies would afford me the option of adding TMC-114 (brand name Prezista), the one protease inhibitor I had not tried. I entered the Merck MK-0518 study and for the first time since I started HIV drugs I would have two new drugs! After two months I have undetectable virus levels and the highest CD4 count since I first started therapy, at more than 200. Finally, I have treatment success after the long haul of disappointments and frustration.

Certainly people starting HIV treatment today will not need to go through the difficult road I did, ending up with a MDR virus and few options. The prospects are much better for choosing a regimen out of the 26 drugs that will be strong, safe, and long lasting. People with MDR virus should hold on as long as they can until they can gain some of the new agents being studied—at least two new drugs. The possibilities will open up if people can just wait. Unfortunately, there are those who can’t.

It takes a lot of knowledge and luck to fight this tricky little virus called HIV. People must be persistent and demand what they need. They have to work closely with an experienced HIV doctor and be aware of all their options. They have to read up and study. Ask questions. Dare providers to do the right thing for you. It can be done. I truly believe I am alive today not because of the mistakes I made in treatment choices, but because I was resilient and informed enough to buy time to this very day.

Survival can be a desperate thing. If you became stranded on a desert island, you would do whatever you had to stay alive. I think it is no different in living with HIV. But today, due to research breakthroughs, new drug development and a little determination, patience, and awareness, a longer life with HIV is attainable… it is a chronic manageable disease.

Adapted from an article which appeared in the Spring 2006 ACRIA Update.