Health Matters: World AIDS Day, December 1, 2020
On July 3, 1981, an article appeared on page 20 of the New York Times entitled, “Rare Cancer Seen in 41 Homosexuals.” This was the first major news story describing the emergence of a previously unknown and what was proving to be fatal disease affecting primarily gay and bisexual men in New York City and San Francisco. At that time, patients were presenting with purple spots on their skin and painful, swollen lymph nodes. Doctors suspected it was a form of skin cancer, one previously only seen in a much older and sicker population called Kaposi’s Sarcoma or KS. The men who were dying at the time were young and otherwise healthy. Medical providers did not understand what was causing the cancer, and whether it was due to an underlying infectious condition.
About a month before this article appeared in the Times, the Centers for Disease Control and Prevention had reported on an outbreak of a rare kind of pneumonia, Pneumocystis carinii, that like KS, was occurring in otherwise healthy, young gay and bi men living in Los Angeles. Over time, these conditions were also observed in patients who reported a history of intravenous drug use or hemophilia.
Because of the stigma around homosexuality and drug use, the general public paid very little attention to this emerging health crisis, even after the discovery of the human immunodeficiency virus (HIV) in 1984. It wasn’t until 1985, after Rock Hudson died from AIDS, that then President Ronal Reagan first publicly mentioned the disease. By then, more than 16,000 people, mostly gay and bi men and IV drug users, had died from it in the United States, many of them dying alone in hospital rooms behind doors emblazoned with red warning signs cautioning entry after being abandoned by fearful and judgmental friends and family.
Societal indifference, ignorance, stigma, and fear contributed to an early lack of action by the federal government on developing effective treatments to combat AIDS. It was organized protests and the work of persistent and vocal community-based activist organizations like Act Up that ultimately spurred government action and interest from pharmaceutical companies. These activists were aided by Dr. Anthony Fauci, the Director of the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health, who was able to negotiate between government bureaucrats and the activist communities to expedite research and drug trial protocols to speed the delivery of new treatments to persons living with HIV.
Fast forward to 2020 and we are facing another new and lethal pandemic. Similarly to HIV, COVID-19 has disproportionally affected marginalized and vulnerable communities. And sadly, many patients diagnosed with COVID-19 are also dying alone in hospital rooms, cared for by hospital staff shielded by layer upon layer of personal protective equipment. While medical providers struggle to identify effective therapies and researchers scramble to develop a safe and effective vaccine, the same problems that hampered the HIV response have slowed progress in fighting COVID-19. Stigma and fear paired with a rejection of science and basic public health principles have led to the politicization of the disease and the lack of a consistent organized response from the federal government.
As we approach December 1, World AIDS Day, let us recognize the many parallels between the AIDS and COVID-19 pandemics, and the many lessons to be learned from the past. As we honor the memory of the 700,000 plus persons who have died in the United States since the beginning of the AIDS pandemic, we must also reflect on the tragic loss of nearly 250,000 persons who have died to date from COVID-19 in the United States. As we celebrate the safe and effective anti-retroviral therapies that now permit many of the 1.2 million people living with HIV in the United States to live long healthy lives, we must also remember the hard work of those early HIV/AIDS activists who helped make those therapies possible. The lessons of the HIV/AIDS pandemic can help us confront the crisis of COVID-19 as we formulate responses guided by science and public health rather than stigma, fear, and shame. The fact that Dr. Fauci remains the head of the NIH and continues to act as a bridge between communities impacted by both pandemics and our federal bureaucracies provides real hope that eventually we will get things right.
Stephan Ouellette, LCSW is the Ryan White HIV/AIDS Program Manager at MCHC Health Centers, which provides care to more than 200 persons living with HIV in Lake and Mendocino Counties. The federal Health Resources and Services Administration’s Ryan White HIV/AIDS Program provides a comprehensive system of HIV primary medical care, essential support services, and medications for low-income people living with HIV who are uninsured and underserved. The Program funds grants to states, cities/counties, and local community-based organizations to provide care and treatment services to people living with HIV to improve health outcomes and reduce HIV transmission among hard-to-reach populations.