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Diary of an HIV Doctor: Life During the Early Years of the Epidemic

By Daniel S. Berger, M.D.

November/December 2000

ACT UP and other AIDS activists were often chaining themselves to various public buildings. They were frequently getting arrested while shouting and attempting to increase public awareness for AIDS. Two Republican presidents refused to demonstrate the slightest cognizance of the rapidly developing national emergency. It was commonplace to see individuals who looked like skeletons, many riddled with Kaposi's sarcoma lesions. We were desperate to help patients with opportunistic infections with little or no treatments. Cryptosporidium, PML, toxoplasmosis, CMV encephalitis, CMV retinitis, cryptococcal meningitis and MAC. The year was 1984, 1985, 1986, 1987, 1988, 1989, or 1990.

During this era people like Martin Delaney were busy making drug runs across the border to Tijuana, Mexico to obtain ribavirin. Jim Corti was bringing in compound Q from Shanghai, China. Jim brought in, then illegal, clarithromycin (Biaxin) from Italy by request from me for my patients with MAC (later finally approved by the FDA). Several people in California and Texas were involved with the production of bootleg Hivid (ddC). A Philadelphia research lab was raided of its gp160 treatment vaccine. Also during this heart-wrenching period, Steve Wakfield, then the executive director of TPAN, was often busy visiting many members of the community at the hospital and providing education, support and other valuable services at TPAN. TPAN served an indescribably invaluable service during those days. It was not uncommon for "Ask the Doctor" night at TPAN to be attended by no less than 100 people. They were thirsty for any advice to result in their ability to help themselves feel better, let alone survive.

Was it really 10 or 12 years ago? Can many HIV-negative community members or the more recently and newly-infected individuals understand what life was like for someone with HIV or AIDS 10 years ago, let alone during the 1980s? How does one begin to attempt sharing with our readers this kind of experience? It may be said that it is unfortunate that most have little frame of reference for life during those times. One could easily have been a Faust fan, selling one's soul to the devil in return for merely understanding the reasons behind the existence of this epidemic, the reasons why our community had to endure the loss of many of its closest friends and the disappearance of valuable talent.

But let's continue to put things in perspective. In 1987 there was nothing. During 1988 AZT was approved but still nothing available for CMV retinitis, the number one cause of blindness for persons with AIDS. In 1989 IV ganciclovir was approved. HIV doctors were constantly occupied with treating the blood infections that resulted from infected central lines. Long term indwelling central catheters were needed for the administration of drugs to treat CMV retinitis. The ensuing hospitalizations and infections continued to weaken many HIV positive individuals. Life was all about hospitals for many of those infected with HIV.

There was the prevailing hopelessness and a conservative notion of what the standard of care should be. There were many nights of lost sleep, many days of preoccupation and worry. However, as a young HIV-treating physician, I could not let my frustration and periods of depression show. I remained stubborn, putting on my most optimistic face mask so that I could continue to provide the necessary hope. I implored patients to obtain alternative sources of treatment. We used AZT combined with bootleg ddC and a chemotherapeutic agent developed from a Chinese cucumber known as compound Q. While compound Q was found to kill HIV infected cells, it had to be administered intravenously. I could not provide Q through the medical office or clinic. Patients organized infusion groups (known as Q groups) at individual homes during many evenings. I needed to be present and supervise the infusions and treat the usual and frequent allergic reactions that may have occurred. I was sure this renegade treatment was effective since it raised T-cells, sometimes even doubling the count, and patients often reported improvement in HIV symptoms. Peter Jennings hosted a special television program on PBS devoted to compound Q treatment featuring Martin Delaney and the late Larry Waits, M.D. Project Inform issued a bulletin highlighting the effects and benefits of Q.

Therefore, compassionate track Videx (ddI), illegal ddC (later FDA approved) in combination with AZT and often with Compound Q, NAC, or glutathione was more the norm in my practice during those early years. I endured the behind-my-back criticism by peers and other conservatives, but knew I was doing everything I could for a very bleak picture. Viral load testing was not yet discovered. In 1990, Drew Badanish, one of the founding graphic designers of Positively Aware, and another TPAN hero, Steve Whitson, who eventually became Editor of Positively Aware, were some of my heroic patients. They, along with many others who were taking these same combinations, made it to the era of protease inhibitors to talk about it. Many are currently working full time, their loved ones at their side. They can reflect on those interesting times and what was HIV drug therapy in 1990.

Eventually, Zerit (d4T) and Epivir (3TC) were approved, though we knew little of the optimum way of prescribing these new agents. Trials with thymus immune globulin and thymic humoral factors, as a treatment to stimulate T-cell growth and differentiation, came and went. Later we participated in clinical trials for a new class of investigational agents known as non-nucleoside reverse transcriptase inhibitors (nevirapine or Viramune), protease inhibitors, interleukin-2 and Sustiva (efavirenz). As HIV drugs were being added to the national formulary, we saw less illness and less hospitalizations.

Slowly there was more hope.

There isn't a day that goes by when I don't think of those times and remember people not forgotten. I am thankful for the many who survived and made it to a new millennium. I am grateful for the support I received from many loyal patients and the same stubbornness and fortitude that many HIV positive individuals maintained through many hard times. I hope that lessons can be learned and safe sex may return to being en vogue. Many of you indeed understand; fortunately many of our readers have survived those tragic times.

Daniel S. Berger, M.D. is Medical Director for NorthStar Medical Center, Clinical Assistant Professor of Medicine at the University of Illinois at Chicago and editor of AIDS Infosource ( Of recent, he is a medical consultant for Positively Aware and will feature a regular column entitled "The Buzz."

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