AIDS/HIV, the LGBTQ Community, and PRIDE Month: A Reflection

This reflection is dedicated with gratitude to the many LGBTQ activists who courageously engaged with politicians, scientists, and health leaders to advance the care of patients worldwide.

Forty years ago this month, near the end of my second year in Pathology Residency, Morbidity and Mortality Weekly Report reported a small case series in its June 5, 1981 issue describing Pneumocystis pneumonia in 5 homosexual men. Soon there were additional reports of gay men affected by P. carinii (now renamed P. jiroveci) pneumonia, Kaposi sarcoma, and other unusual opportunistic infections. These riveting descriptions signaled a new disease entity, soon known as Acquired Immunodeficiency Syndrome (AIDS). Initially some labeled AIDS “the gay disease” or “the gay cancer,” and the fear and stigma associated with AIDS led to discrimination, including evictions from housing, threats of evictions of clinics that served AIDS patients, and fear among some people of even casual contact with people affected by the disease.

At that time, I was training in a tight-knit cohort of residents who studied and socialized together. In those days we performed autopsies in street clothes, with only plastic aprons and gloves as “protective gear”- no masks, no face shields or goggles, no scrub suits. Within a few months of the MMR report, after AIDS fatalities in our training hospital, many of us went to the Autopsy room to observe the unusual findings at our gross organ review rounds, which were same-day examinations of fresh tissue. The next year, in the summer of 1982, I was married in a small ceremony that included only family and a few of my parents’ closest friends. Several years later two men who attended my wedding died of AIDS, and two of my fellow residents, and their partners, also died of AIDS.

By December, 1982, AIDS had been reported in a baby who had received multiple blood transfusions, and in January, 1983, AIDS was documented in women who had been sexual partners of men with AIDS and in people injecting drugs. These reports dispelled the idea that AIDS was unique to the gay community and suggested that the disease was likely due to an infectious agent that could be transmitted through blood, blood products, and sexual contact. Then in my Fellowship, still performing many autopsies, I was amazed at the dramatic change in protocols that appeared nearly overnight, as we were now required to use personal protective equipment for any work involving blood and fresh tissues. We gowned, double-gloved, wore masks and face shields, scrubs, and shoe covers when performing autopsies; and we were trained more diligently in managing needles and scalpel blades, as well as safety in procedures.

Pathologists and laboratory professionals soon learned to identify opportunistic infections that previously had been extremely rare outside the setting of severe immunosuppression. Multiple concurrent opportunistic infections were so common that it became second nature to scan any microscopic tissue section for cytomegalovirus, toxoplasmosis, fungal infection, atypical Mycobacteria, Kaposi sarcoma, and other findings. I learned from firsthand experience that there may not always be a single unifying diagnosis, in the sense that an immunocompromised patient may suffer with multiple infectious agents. By 1987, as a young attending pathologist on weekend call, I had to learn to perform by hand special rapid Gomori methenamine silver stains on any cases that required them. (As case numbers increased, the service began to employ histotechnologists to cover the weekends.)

Discovery of the causative infectious agent, Human Immunodeficiency Virus (HIV), by groups led by Montagnier (1983) and by Gallo (1984), was a critical step for the development of an accurate serologic test (1985) to detect pre-symptomatic disease. Publication of the retroviral sequence later facilitated the development of treatments, such as AZT, which was approved in 1987, and later to Highly Active Antiretroviral Therapy (HAART) in 1997. The development of effective antiretroviral therapies along with accurate and sensitive laboratory tests for HIV offered the opportunity to test and treat asymptomatic people before they developed severe immunosuppression and opportunistic infections.  

This abbreviated summary greatly understates the devastating toll that the pandemic has wreaked and continues to wreak. Millions of young and middle-aged people across the globe, of all nationalities, in all communities, have died. Many children were orphaned. Those of my generation continue to mourn the losses of the people we loved and wonder in grief at the creativity and potential contributions also lost to our society and culture.

And, sadly, HIV rages on. Intravenous drug users and men who have sex with men continue to face discrimination and abuse in many countries. Access to preventive therapy and lifesaving (but not yet curative) antiretroviral treatment is still denied or unavailable to many patients. Efforts to develop an effective vaccine have been unsuccessful to date. Work to address the global nature of this pandemic have required international cooperation and coordinated efforts, that continue to this day. The current extensive global health activities of ASCP stem greatly from the Society’s early invitation to set up HIV testing for the PEPFAR (President’s Emergency Plan for AIDS Relief) effort, which has also led to engagement in laboratory quality improvement efforts and workforce training worldwide. Finally, as we honor our LGBTQ colleagues, patients, and family members during PRIDE month, it is important to acknowledge that members of LGBTQ Community have been at the forefront of health care advocacy since the HIV pandemic first emerged. The tremendous progress in treatment, testing, and global strategies are results of their continuing energy, initially in the U.S. and now around the world to help other communities. We are all indebted to HIV/AIDS activists, such as the Gay Men’s Health Crisis and ACT UP, who have engaged politically, staged public awareness-building efforts, and challenged political and health care leaders and research scientists to address the emergency posed by the infection. Their efforts led to greatly accelerated treatment trials and effective treatments, and they have fought to have drug costs lowered to increase access. They can take great PRIDE in their lasting contributions to help patients everywhere.

-Dr. Upton is board certified in Anatomic Pathology and Cytology and directed an autopsy service and forensic pathology fellowship program at Beth Israel Deaconess Medical Center in Boston, Massachusetts. She has also practiced cytopathology and general surgical pathology, and has focused on genitourinary pathology, head and neck pathology, and gastroenterology (GI) and liver pathology. From 1982-85 and 1987-2002, Dr. Upton lived in Boston and taught at Tufts, Boston, and Harvard Universities. Since 2002, she has been at the University of Washington in Seattle, where she formerly directed the GI and Hepatic Pathology Service the Pathology Residency Program and the UW GI and Hepatic Pathology Fellowship. Currently Emeritus Professor of Pathology, she continues to practice Surgical Pathology, Autopsy Pathology, and Cytopathology, and she is one of the specialists at UW in the areas of GI, liver, and pancreatic pathology.

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