Nothing About US Without US

The communities of Long-Term Survivors living with HIV were reduced by two recently with the passing of Ed Shaw (1941-2020) and Larry Kramer (1935-2020). One black man age 79 and one white man age 84. Both Long-Term Survivors of HIV. Both advocates extraordinaire. Both were older adults living with HIV for three decades. Both men were infected with HIV in the 1980’s. Both men would live for three decades with HIV. The astrological sign for both men was Cancer.

It is sadly ironic that after battling HIV for three decades, Ed would succumb to COVID-19 infection. Ed Shaw was the highly visible and tireless advocate for those aging with HIV. Over two decades ago he recognized that the needs of aging older adults were unique, complex, and cumulatively demanding. Ed was the first member of the New York Association on HIV over Fifty (NYAHOF). Ed would Chair NYAHOF for near two decades. He helped organize the POZ LIFE EXPOS in the late 90s. He was a bridge to the most disenfranchised communities in New York City. A gifted leader, he chaired many groups: NYC HIV Health and Human Services Planning Council; NYS Prevention Planning Group; Consumer Advisory Board at GMHC; and the Community Advisory Board of NYC Health & Hospitals. He was a member of the Aging/HIV/AIDS and GRAY Panthers Committees at the United Nations. Ed’s life story was always transparent. His life was the textbook from which he taught anyone who entered his life sphere. Ed received a myriad of awards for his community volunteer services. There was a special place in Ed’s heart for the Legal Action Committee (LAC), which fights for justice for HIV-positive people and other marginalized groups. He served on LAC’s Board since 2003. His life work included fighting the toxic effects of HIV stigma and discrimination. He easily shared his life experiences which revealed his warm human touch that provided unconditional support and care for those in need.

The development of life saving medications for the treatment of HIV is considered by many the seminal achievement of 20th century medicine. Larry Kramer was a primary catalyst for that medical advance. He warned us that HIV/AIDS would become a public global health epidemic taking the lives of millions, leaving in its path millions of orphans in Sub-Saharan Africa. He founded the Gay Men’s Health Crisis (GMHC) which remains the oldest and largest AIDS Service Organization (ASO) in the USA. That next year he founded the “in your face” global organization ACT UP who adopted the graphic “Silence = Death”. Larry insisted, demanded, that those impacted by HIV become part of research and treatment efforts. Undoubtedly by including ACT UP members in that process, effective treatments were developed earlier than might have been expected. Larry’s vision and insistence that patients be part of medical research and treatment efforts, contributed to the recent emphasis on Patient-Centered Outcomes Research.

Larry was a writer. He will have achieved immortality via his authored works. From his autobiographical play, “The Normal Heart” (1985) to his gay centered novel the incendiary “Faggots”, he believed that as long as gays and lesbians defined themselves

And by their sexual orientation they would not experience the breadth of life. Larry was a safe sex advocate who gave his support to gays embracing affection, commitment, and stability. His attitude contributed to the base for much of the same-sex marriage movement. In 2013 while Larry was in the intensive care unit of New York University Medical Center, he married his partner.

Ed Shaw and Larry Kramer were Long-Term HIV survivors (link to LTS site text). Their powerful life force remains with us. We all need to adopt their consistent effort to be inclusive – always. It is often said that teachers affect eternity. Ed Shaw and Larry Kramer were teachers extraordinaire. They are heroes who have found a peace they deserve.

By Stephen Karpiak PhD, Director National Resource Center on HIV and Aging, a GMHC program.

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