Forgotten No Longer
National AIDS Memorial Grove Brings HIV-Positive Hemophiliacs into the Fold
by Hank Trout
Photos Courtesy NAMG
At the beginning of the AIDS crisis, the virus seemed to target sexually active gay men exclusively. And as soon as the disease was labeled “gay cancer” or later “Gay-Related Immune Deficiency” (GRID), the lies and ignorance and stigma gay men had always faced kicked into high gear. We all have memories of friends denied treatment by fearful doctors in ill-equipped emergency rooms; of being refused hospital visits with a sick partner or lover; of religious leaders blaring hatred and homophobia from their pulpits; of a government that seemed not to care that thousands had already died and tens of thousands more had contracted the virus. We were sexually active queers—in a lot of minds, the lowest of the low, an abomination worthy of death-by-stoning. We deserved to get AIDS as punishment for our wicked behaviors.
Then in December 1984, a smart squeaky-clean thirteen-year-old boy in rural Kokomo, Indiana, named Ryan White, who was being treated for a collapsed lung due to pneumonia, was diagnosed with AIDS.
How could that happen? How was it possible? And what was different about Ryan’s diagnosis?
Ryan was one of thousands of people in the United States living with hemophilia, a genetic disease that prevents proper blood clotting, and sometimes causes internal bleeding, including in the brain, which can cause injury or death. In the early 1980s, people living with hemophilia, like Ryan, depended upon a medicine (Factor VIII) derived from the nationwide blood supply. Ryan was one of the first children, as well as one of the first hemophiliacs, to be diagnosed. It was due to Ryan’s HIV diagnosis, and after others were similarly diagnosed, that the country learned that the nation’s blood supply had been exposed to HIV.
Once non-gay hemophilia patients (and the rest of the population) became at risk because of the HIV-containing blood supply, in many minds, there grew a (false) dichotomy between “gay men” who had acquired the virus and the “innocent victims,” deliberately implying that HIV-positive gay men were “guilty” and deserved their painful fate. Regrettably, even some members of the “innocent victim” community adopted hurtful if it weren’t for those dirty gays thinking.
But being labeled the “innocent victims” did nothing to shield HIV-positive hemophilia patients from exactly the same kinds of fear, ignorance, shunning, and stigma that plagued HIV-positive gay men. Ryan White again serves as an example. When Ryan tried to return to school after his HIV diagnosis, parents, teachers, and administrators rallied to keep him from re-admission. After a lengthy, exhausting battle, Ryan was finally readmitted to his school. Other HIV-positive hemophilia patients faced similar stigma and discrimination in schooling, housing, accommodations, and healthcare—the same stigma and discrimination HIV-positive gay men faced.
According to information garnered from websites of the Hemophilia Federation of America and the National Hemophilia Foundation, during those early deadly years, a shocking ninety percent of people in the U.S. with severe hemophilia acquired the virus during the early years of the crisis; all told, over 9,000 people with hemophilia—roughly fifty percent of the known U.S. population with hemophilia—died in the early years of the crisis after being exposed to HIV-containing blood. The shame and stigma attached to HIV drove many hemophilia patients into the shadows. Just as they ignored the pleas of the HIV-positive gay community, pharmaceutical companies and our own federal government turned their backs on the HIV-positive hemophilia community.
Fortunately, with vastly improved testing and screening, the nationwide blood supply is now safer than ever before, and the ban on gay men donating blood has been partially repealed. But the role of the hemophilia community, who fought and worked diligently to get us to that level of safety, has been ignored. For many years now, when we’ve written the history of the AIDS epidemic, some of the real heroes of the fight against the crisis have slipped through the cracks, have been insufficiently acknowledged for their roles in the successes we’ve had and the hope we’ve engendered.
The National AIDS Memorial Grove has taken a major step to ensure that the roles played by hemophilia advocates in the early years of the crisis, and since, are never forgotten or ignored.
The Hemophilia Memorial Circle at the National AIDS Memorial Grove (NAMG), nestled in Golden Gate Park in San Francisco, is a crescent-shaped stone bench carved into a hillside in the Grove that is reinforced with hand-hewn stones, surrounded by newly planted trees and grasses; a bench for reflection sits on the flagstone floor. The Memorial is engraved with the names of those members of the hemophilia community who have been affected by AIDS.
At a September 16, 2017, dedication ceremony, members of the hemophilia community each read the name of one of the first 250 names inscribed on the Memorial; each also deposited one of 250 red roses in vases in the Memorial. Kimberly Haugstad, President and CEO of the HFA, said to the group of 500 or more, “This memorial will serve as a permanent reminder of the lives that were lost and will pay tribute to the bravery and activism of a community that has suffered so dearly.”
Jeanne White-Ginder, Ryan White’s mother who has been a tireless advocate and champion for HIV-positive hemophilia patients since the early days of Ryan’s illness, and has made the realization of this Memorial her life’s work, said at the ceremony, “The Hemophilia Community just wants to tell its story….Our story will be remembered. The Hemophilia Memorial will ensure we never forget those we loved but lost.”
John Cunningham, Executive Director of NAMG since 2009, told A&U that in 2016, NAMG reached out to the hemophilia community for support for “Surviving Voices,” a multi-year oral-history project designed to preserve stories of the Plague Years from those who survived them. That outreach elicited seventeen videos from members of the hemophilia community, including Val Bias, CEO of the National Hemophilia Foundation. Then, on World AIDS Day 2016, NAMG awarded the National Unsung Hero Award to the hemophilia community and announced plans for a permanent memorial for the hemophilia community to be constructed in the Grove. The Memorial was installed at a cost of $200,000 (with donations from the HFA, the NHF, and private donors) in two months, much of the work done by master stonemasons. Mr. Cunningham’s pride in the Grove and in the Hemophilia Memorial is palpable.
“The National AIDS Memorial will in perpetuity hold the awesome responsibility to tell the story of AIDS, the honest and complete story as without that we are doomed to repeat the tragedy that is AIDS,” Mr. Cunningham told A&U. “As a man living with AIDS, having lost so many, and like all who have been impacted I have come to realize that my healing is in proportion to the healing of all who have suffered over the last thirty-five-plus years. This project has availed the miracle that is the National AIDS Memorial to the Hemophilia community and I can say my burden is lessoned as a result of watching long overdue healing take place.”
For further questions related to the Hemophilia Memorial at the National AIDS Memorial Grove, reach out to the National AIDS Memorial Grove at [email protected]; general info regarding NAMG: www.aidsmemorial.org For more information about the Hemophilia Federation of America, log on to www.hemophiliafed.org. For more information about the National Hemophilia Foundation, check out www.hemophilia.org.
Hank Trout writes the For the Long Run column for A&U.