On HIV Long-Term Survivor Day – 40 Years of Fighting Fiercely
Today is the annual commemoration of HIV Long-Term Survivors Awareness Day.
Today also marks the 40th anniversary of the US Centers for Disease Control and Prevention’s June 5, 1981 report of five cases of pneumocystis pneumonia among gay men in Los Angeles. In words that are haunting with the knowledge of what soon followed, the report noted that the existence of pneumocystis pneumonia in previously healthy individuals was “unusual.” This correlation suggested that “[t]he fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact.”
GLAD had been founded just three years earlier in response to police harassment of gay men. LGBTQ people lived in a world of invisibility, criminalization, stigmatization, and a harsh landscape devoid of any protections against discrimination or legal recognition of same-gender love and relationships. From those earliest days of the HIV epidemic GLAD responded – forcefully – to fear, uncertainty about how HIV was transmitted, and the urgency of a life-threatening crisis in our community.
Like many LGBTQ organizations founded in the 1970s and 1980s as part of our growing movement for liberation and equality, GLAD was small, thinly resourced, and fierce. Many of our earliest HIV cases were litigated by Denise McWilliams, who became GLAD’s first staff attorney with the founding of our AIDS Law Project in 1984, and Gary Buseck who devoted countless hours as a cooperating attorney and later became our Executive Director and then Legal Director.
The first HIV matter reflected in our newsletter was in 1983. It involved working with AIDS Action Committee to convince a Boston hospital to abandon its policy of placing all patients identified as being “high risk” for AIDS on blood and secretion precautions. The policy singled out gay men, Haitians, people who inject drugs and hemophiliacs who came to the hospital, even for reasons unrelated to AIDS. Discrimination was rampant. GLAD sued doctors and dentists who refused to treat patients with HIV, police officers for disclosing HIV status in a case that established essential privacy rights, and a landlord for refusing to rent space to the Boston AIDS Action Committee. Employment discrimination was particularly rampant and fueled by fears of gay men and casual transmission of HIV. In one example from 1985, a Boston high tech company, responding to complaints from its workers, refused to allow a gay man to return to work after a brief period of sick leave, a case GLAD ultimately settled. GLAD brought the first cases at the Massachusetts Commission Against Discrimination, arguing that existing disability anti-discrimination laws prohibited HIV discrimination. That theory was later upheld by the United States Supreme Court in GLAD’s 1998 victory in Bragdon v. Abbott against a Maine dentist who turned away patients with HIV. This case established nationwide protections against discrimination for all people living with HIV.
Long before marriage for same-gender couples was on the horizon, GLAD represented gay men when the death of their partners revealed the legal vulnerability of our love. In 1987 GLAD represented a man whose partner, John Reilly, died of AIDS and made specific directions (though not in writing) about what he wanted his partner to do with his remains. He wanted to be cremated and have his ashes kept in his favorite piece of Rose Fiestaware which he collected. After John’s death, the hospital instead turned John’s body over to his estranged mother who refused to abide by her son’s wishes. GLAD sued seeking return of the ashes to John’s lover. GLAD attorney Gary Buseck prevailed. The Court ordered that the ashes be exhumed. Gary and then GLAD Executive Director Kevin Cathcart went to the cemetery to retrieve the ashes. Cases like John Reilly’s, and many others, broke the silence about gay love in America and demonstrated the harsh legal void in which same-gender couples lived.
GLAD has also fought for sound HIV prevention policies, often in the face of deep prejudices.
Community outreach was central to GLAD’s HIV/AIDS work. The HIV epidemic has disproportionately impacted multiple marginalized groups, including people of color, people who inject drugs, and transgender people. Although GLAD was founded as an LGBTQ rights organization, there was never any doubt that we were here for all people affected by HIV. Establishing trust and connection was vital to ensuring our work in multiple communities. GLAD’s first community engagement position focused on outreach to communities of color in the Greater Boston area. This role morphed into a Spanish-speaking Client Advocate who worked throughout New England. We met with groups large and small, from support groups to case management meetings, explaining our work and doing onsite intakes.
By the late 1990s new treatment advances meant that people with HIV were living longer and eventually HIV became a manageable chronic condition. These treatment advances also raised new legal and policy issues because people with HIV were living long enough to experience barriers due to other health conditions. In 2001 I received a phone call from a colleague at AIDS Action Committee. She told me that Belynda Dunn, a beloved AIDS activist who had done groundbreaking work with Boston’s Black churches, was dying. Her HIV was not going to kill her, but she had end-stage liver disease as a result of Hepatitis C infection. She needed a liver transplant, but at that time insurers were denying all organ transplants to people with HIV on the basis that they were experimental. GLAD sued Belynda’s insurer. Her case, and a second one filed shortly after that, against our state Medicaid agency, changed insurance practices and opened up organ transplantation to people with HIV. We also responded to the needs of long-term survivors who experienced a disfiguring and painful side effect of early and toxic HIV medications known as lipodystrophy. Working with many colleague organizations such as AIDS Action Committee, Massachusetts passed the first law in the country requiring that insurers cover treatments to correct this condition.
Responding to the changing needs of our longest-term survivors of HIV, too, is a crucial part of our movement’s work…
GLAD has also fought for sound HIV prevention policies, often in the face of deep prejudices. We worked with our colleagues at AIDS Action Committee to successfully sue the Town of Barnstable which had illegally closed a critical program that provided clean needles to people who inject drugs. We are working to remove barriers to access to HIV pre-exposure prophylaxis (PrEP), a daily pill that reduces the risk of HIV prevention by close to 100 percent. Our lawsuit against Mutual of Omaha Insurance Company eliminated a national insurance practice of denying life, disability and long-term care insurance to HIV-negative people who take PrEP. We have sued a Rhode Island primary care physician who refused to prescribe PrEP to a patient at high risk for HIV. And we are working to pass bills to ease access to PrEP by allowing pharmacists to provide PrEP without a physician prescription for up to 60 days.
Today we understand HIV transmission, treatment, and even prevention. We have the tools to end the epidemic. Still, stigma and discrimination persist and systemic inequities in our society and health care system resulting from structural racism remain a particularly significant barrier. The CDC’s latest “National HIV Surveillance System Report,” affirmed the ongoing disproportionate numbers of Black and Latinx individuals among new HIV cases and cases in which people are not virally suppressed, the marker of successful treatment. The disparities in access to PrEP are especially disturbing. Only 23% of people for whom PrEP is indicated were prescribed it in 2019. But only 8% of Black people and 14% of Latinx people for whom PrEP was indicated were prescribed it in 2019 compared to 63% of white people.
Forty years on, there has been exhilarating progress and yet harsh and painful disparities in who is vulnerable to HIV remain and require our continued commitment. Responding to the changing needs of our longest-term survivors of HIV, too, is a crucial part of our movement’s work, particularly as members of our community age and encounter evolving forms of discrimination in housing, healthcare, and long-term care settings. GLAD’s AIDS Law Project remains central to our work for LGBTQ justice and equality because these battles are as critical now as they were during the bleakest days of the HIV epidemic. Liberation for our entire community depends on fighting – and winning – them.