Oren Cohen, MD, recalls life as an infection disease physician during the HIV epidemic of the 1980’s

Sunday, December 1 is World AIDS Day, an international day dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection, and a time to remember those who have died of the disease. It has been observed worldwide since 1988.

Oren Cohen, MD, our Chief Medical Officer, was an infectious disease physician in New York City during the early days of the epidemic and shares this remembrance:

It was September of 1990 and my clinic schedule was packed. Like many of my patients, Mark was in the advanced stages of AIDS–multiple episodes of Pneumocystis pneumonia (PCP), cytomegalovirus retinitis, and innumerable Kaposi Sarcoma lesions which were painful and disfiguring. His CD4+ T cell count (a measure of the status of the immune system) was zero; his response to AZT had been brief. He was now blind, gaunt and pale with sunken cheeks. He was only 32 years old but, like many people with AIDS during this time, looked decades older. Mark, intense and quiet, had wanted to dedicate his career to public service, but we both realized at that appointment that he would unlikely survive another six months. He simply wanted to be comfortable so we selected home nursing and morphine as his treatment. He died a few days before Christmas.

NYC in 1990 was one of the AIDS capitals of the world, a designation shared with other major global urban centers. These cities, however, represented the proverbial ‘tip of the iceberg.’ In hindsight we know that by this time, HIV was already in smaller cities, towns, and villages worldwide, just not to the levels seen in NYC. The sterile diagnostic names belied the heartbreaking and crushing amount of human suffering. From disease. From loneliness. From abandonment, fear, hate, discrimination, and indignity.

Before it was called AIDS (acquired immunodeficiency syndrome) it was known as GRID (gay-related immunodeficiency syndrome), because it appeared that only gay men were developing these opportunistic infections and malignancies. The disease, however, was soon recognized also in blood transfusion recipients and hemophiliacs who had received infusions. The first reports of what we now call AIDS were published in 1981; by the mid-1980s, scientists would isolate and identify HIV as the virus that causes AIDS.

Although progress did not come soon enough for so many people like Mark, it was remarkably swift.

The most famous of the early AIDS drugs was AZT (azidothymidine). Under immense pressure from activists and others, the FDA review of AZT took only 4 months and it was approved 20 months after the investigational new drug application was filed. While AZT was terribly toxic for most patients and extremely expensive ($8,000/year), it was all we had at that time.

The role of AIDS activism in pressing for action with a sense of urgency cannot be overstated. Groups including ACT UP, Gay Men’s Health Crisis, Treatment Action Group, Lambda Legal Defense and Education Fund and others integrated themselves into scientific meetings, communicated important findings to stakeholder communities, created crisis hotlines, and relentlessly pressured scientists, politicians, and policy makers to take action! The accelerated review of AZT was a real-time example of how AIDS activism influenced policy, and it eventually gave rise to the now-familiar “fast-track” designation within the FDA review process. It would be fair to say that the early advocacy of HIV-related organizations served as a model for the activism seen today around breast cancer, Alzheimer’s, and heart disease.

The subsequent history of anti-HIV drug development is remarkable in many ways. The therapeutic armamentarium now includes more than 30 drugs and many combination strategies that can be brought to bear as drug resistance emerges. Whereas life expectancy for AIDS patients early in the epidemic was measured in months, by 2011, the total life expectancy increased to about 70 years.

Recently, we have been involved in the development of a new drug candidate that represents a new class of drugs, HIV capsid inhibitors; this drug has been granted Breakthrough Therapy designation from the FDA.

In the West, HIV/AIDS began as an outbreak concentrated in gay men but we eventually began to unmask diversification of the epidemic, with increasing numbers of cases in injecting drug users and their partners – in both cases, disproportionately in people of color. On a global scale, sub-Saharan Africa has borne the greatest burden of the epidemic, as well as India and parts of southeast Asia. Of the approximately 40 million people living with HIV/AIDS around the world, nearly 30 million live in sub-Saharan Africa. Heterosexual transmission predominates in Africa, creating a huge number of “AIDS orphans.” Thanks to decades of improvements in public health and rising life expectancy in sub-Saharan Africa, the average life expectancy in Swaziland reached 62 years by 1990; however, in the face of an unchecked HIV epidemic, average life expectancy fell to 42.5 years by 2005.

In some ways, we are victims of our own success. We rarely hear about HIV/AIDS in the news any more. In the West, HIV has become primarily a chronic, manageable illness. In addition to the rapid progress in developing drugs for the treatment of HIV infection, the epidemic spurred a huge amount of research that has contributed to progress in immunology, oncology, mycology, parasitology, and bacteriology.

Mark, my patient who died 29 years ago, would be amazed at the progress that has been made, but he would be dismayed about how little attention is paid to HIV/AIDS today, and appalled that so many young people know almost nothing about it. So, in memory of the millions who have perished, let us rededicate ourselves to ending the epidemic. It’s essential that we find an effective vaccine. We need to educate and reconnect with youth to prevent the epidemic from catching fire again in the next generation. And for the millions living with HIV infection, we need more research to improve their quality of life as they deal with the long-term consequences of antiviral therapy. Most of all, we need empathy and compassion. To alleviate suffering. To understand the continued urgency for action.