Twenty-one years ago, approximately the same time that I began seeing the first HIV-positive patients, most of whom had AIDS, Test Positive Aware Network (TPAN) was launched, and it now celebrates 21 years of dedication to the community. Back then there was only one approved treatment for HIV infection, and people were taking their own home remedies or the treatment du jour, changing sometimes weekly, and most were worthless for halting the disease. The weekly meetings at TPAN were often attended by no less than 100 people, everyone very anxious to get information about how they could help themselves during very dire circumstances. Not until 1987 did AZT become approved, but only for patients with a CD4 T-cell count below 200. At that time, imagine, there was no treatment for CMV retinitis, the number one cause of AIDS-related blindness, which affected about 10% of people with HIV/AIDS. Today, we simply don't see many of these problems, due to the improved treatment for HIV infection.
However, without available treatment during the early years, buyers clubs for HIV medicines sprang up in several U.S. cities. Their practices were not always legal; they were proponents of activism and helped provide some treatments that were effective but not yet available. One of these was ddC (Hivid, now discontinued), a then useful antiviral which several buyers clubs were synthesizing themselves in homemade labs. It was not until September, 1989 that ddI (Videx) became available by compassionate track program for only those patients who could not take AZT. I had started putting many patients on a combination of these drugs, constructing my version of an early "cocktail" for my patients. For many reasons, it was apparent to me that two or three antiviral drugs were better than one alone. Understand that what is now known as the treatment cocktail did not come about until 1996. And although I presented my research data of combination AZT/ddI at the World AIDS Conference in 1992, I was heavily criticized, by many more conservative community physicians who believed that treating HIV was hopeless and perhaps damaging. As a doctor who believed in activism, I had to battle a Chicago community newspaper that once criticized me heavily for opening up a private research clinic and taking action. I was employing nutrition and conducting the first studies to fight AIDS wasting, the number one AIDS killer. The extensive and in-depth immune system testing I performed was also challenged by others, but since viral load tests did not yet exist, this was a useful marker from which to monitor patients.
The time was desperate and I had felt that extreme measures were sometimes needed to save lives.
Taking us back to those days, I'd like to recall a story about one of my patients, who was sick in the intensive care unit of a Chicago hospital. Because of irrational panic among the house staff, the nurses at this ICU began calling in sick or striking, for fear that they would contract some infection from my patient. The hospital did not stand by me, nor was it supportive of my intense focus on caring for people with AIDS, nor was the physician who was then the chief of medicine at this institution (which I shall not name here), who was my associate. I was forced to transfer my sick patient, who was on a respirator, to another medical center.
It was not an easy time being an HIV doctor. Admitting that this was my field to other physician peers was not uncommonly met with a sneer. But the difficult times and endured sadness were paralleled by a strong mindset of being on a mission, which helped me overcome common prejudice and challenges. The time was desperate and I had felt that extreme measures were sometimes needed to save lives. There was no time to sit back and wait for the "system" while others were dying. I began studying a variety of immune system modulators in clinical trials. I was not a conservative doctor but was constantly under attack for trying newer approaches to a disease for which patients and friends were between a rock and hard place.
Needless to say, there were many sleepless nights and the environment one had to put up with, during the earlier years of the epidemic here in Chicago, was not of my choosing. However, it made me tough and what slowly emerged was strength.
This information empowered patients, and allowed them to make informed choices regarding their treatment.
During the days of AIDS activism, the world was awakened by an outpouring of news stories and heartbreaking accounts combined with many spirited ACT UP protests. AIDS survivors chained themselves to government buildings, and public "die-ins" were in vogue. Eventually compassionate track programs for early access to HIV medications were instituted due to these protests. This was the first time in U.S. history that this provision became the rule for any life-threatening disease. It was a major accomplishment by very courageous AIDS activists.
Many early AIDS service organizations, such as Project Inform, Test Positive Aware Network and Gay Men's Health Crisis were actively getting information out about investigative approaches to treating HIV disease. Community newsletters were read by hungry PWA's (people with AIDS, a common term used at the time) pursuing information to help themselves feel better, let alone survive. Educationally, they offered possible treatment approaches, and explained how and where to gain access to new medications and clinical trials being conducted for investigative approaches. This information empowered patients, and allowed them to make informed choices regarding their treatment. A close friend and patient, Drew Badanish, was then the graphic artist for Positively Aware and is credited for helping transition TPAN's newsletter into a dynamic magazine. He called himself an AIDS warrior and fought the disease with enviable stubbornness. He, along with others, was instrumental in shaping my philosophy of treating patients. Martin Delaney, the founding director of Project Inform, was another important individual who challenged the bureaucracy. Together, we held yearly community forums in Chicago, often attended by more than 300 people, further educating individuals about research and treatment.
I don't know where we'd be today without countless individuals who gave their lives at that time. Also, some physicians began implementing research projects, their cohort studies providing clues and insight into potential directions for treatment. Many of these earlier studies were presented at national and international conferences in the form of abstracts and posters; I often found them to be the pearls of these conferences.
In summary it was like a machine where all the components -- the treatment activists, educators and physicians -- all worked together. It added strength to the struggle, and became an organized and powerful functional movement.
1996 saw the beginnings of what became known as the treatment cocktail; the use of protease inhibitors became pervasive. I began to spend less time making rounds at the hospital, since I had very few patients needing in-patient testing or therapy. How to achieve treatment success and construct effective therapy was learned and extended to a broader category of primary care doctors in urban areas. It's important to take note that now we've even observed the development of a one-pill, once-daily cocktail, Atripla, which newly-infected patients can take advantage of if not infected with resistant virus. More technological breakthroughs have resulted in more choices for HIV treatment. Toxicities and side effects from older drugs have been greatly reduced with many of the newer agents.
Fast forward to 2008. To date, at Northstar Medical Center in Chicago, we're conducting more than 150 HIV clinical trials. A team of research staff helps coordinate the various research projects currently ongoing. Like the space age and Star Wars, we're comparing two integrase inhibitors in one trial and studying several new but intravenously administered antiviral medications in other studies. In my daily routines, doing multi-directional research feels surreal. Amongst the weekly cacophony of seeing patients and conducting research, there's also the constant flow of e-mails and communications, requests and questions from various research-sponsoring companies throughout most days. These usually need to be answered promptly while still seeing patients.
Patient visits have changed as well. They now require confronting issues such as HIV with hepatitis C co-infection (the rates have soared), and HIV complications often now involve syphilis and MRSA infections, as well as crystal meth drug addiction. My schedule also constantly gets altered due to travel so that I can provide lectures to physicians around the country. There are frequent research-related manuscripts, articles, or abstracts that need work or review. Finally, running a demanding clinic means that there are always management issues that need immediate attention. In a word, the work is often exhilarating and challenging, but often too much.-
HIV treatment conferences are important to attend; new research results get unveiled, many prior to publication in medical journals. The International AIDS Conference held this year in Mexico City and the Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC), held in Washington, D.C., had varying themes this year that demonstrated how the field of HIV has changed. However, there are currently 36-39 million people around the world infected with HIV. The vast majority do not receive treatment. Infection rates have continued to skyrocket.
New debate occurred this year. Low viral loads correlate with reduced HIV in genital secretions and may result in lower probability of HIV transmission by HIV-positive persons on treatment having undetectable viral loads. This strategy may be an important tool for slowing infection rates. We have yet to develop an HIV vaccine or effective microbicides.
Other current issues revolve around the many long-term survivors who developed resistance to older treatment. However, new technological advances have resulted in true second generation agents in the classes of protease inhibitors (Prezista) and non-nucleoside reverse transcriptase inhibitors (Intelence). Medications from entirely new drug classes were developed, such as fusion (Fuzeon), integrase (Isentress) and entry inhibitors (Selzentry). Patients will have many antiviral choices for the future to continue maintaining full viral suppression.
Management of HIV disease in all its facets and components has become an art and complicated science. Sadly, there are fewer doctors from the early days of the epidemic who remain in the field seeing patients while continuing to participate in clinical research. Many have left and gone to industry. I often feel like a dinosaur. But as one who once dealt with daily difficulties due to ineffective treatment and ugly politics, I now find myself in the midst of the big blast of progress. I remain an HIV doctor fulfilled.
Dr. Daniel Berger is a leading HIV specialist in the U.S. and is Clinical Associate Professor of Medicine at the University of Illinois at Chicago. He is the founder and medical director of Northstar Medical Center, the largest private HIV treatment and research center in the Greater Chicago area. Dr. Berger has published extensively in such prestigious journals as The Lancet and The New England Journal of Medicine and serves on the Medical Issues Committee for the Illinois AIDS Drug Assistance Program and the AIDS Foundation of Chicago. Dr. Berger has been honored by Test Positive Aware Network with the Charles E Clifton Leadership Award. Dr. Berger can be reached at DSBergerMD@aol.com.