Preserving Our History For A Safer Future
Preserving Our History For A Safer Future
Written by Kathy MacKay.
Posted: September 17, 2024. This article was originally shared in our Summer 2024 Newsletter.
It was a July morning in 1997, and I was nearing the United States Capitol Building in Washington, DC. The clear blue sky dazzled the reflecting pool, but my world was hazy. I walked alone, unsure of the steps before me as I wended my way to the back side of the Capitol building. In the distance, I spotted a few hundred people gathered on the lawn, partially sheltered by oak trees. The pep-talk and rally about to take place was part of an effort to garner congressional support for the Ricky Ray Hemophilia Relief Fund, a bill drafted by the Committee of Ten Thousand (COTT). When passed and funded, it would provide some financial relief to people with hemophilia and other bleeding disorders who contracted HIV from blood products. Or in cases such as mine, to their next of kin.
Until that day, I had lived the tragedy in isolation.
One month earlier, my thirty-three-year-old husband, Dave, died of hepatitis C and HIV. Still reeling from my loss and grappling with my newfound knowledge that the viral contamination of factor VIII and factor XI concentrates was preventable, I stood on shaky ground. Before I left my home in New Hampshire and boarded an airplane from Boston to Washington, COTT’s social worker advocate, John Rider gave me a crash course in the layers of corporate missteps, FDA regulatory failures, financial conflicts of interests, and denial that had put our hemophilia community in harm’s way. COTT was formed as a nonprofit in 1990 by the late Tom Fahey, who was an active member of NEHA, and the late Jonathan Wadleigh-both from the Boston area. The duo, along with Tom’s wife, Fran, saw a need for a national support system for the estimated ten thousand people with hemophilia and other bleeding disorders who had contracted HIV from clotting factors. Hepatitis C, with its longer incubation period, was perhaps overshadowed by the faster killing AIDS-related complications.
To be fair, COTT members were not the only individuals to investigate what happened, but over the years, it amassed enough written evidence to create a chronological history of what went wrong and why. I could go down a rabbit hole of providing the full story here, naming key players, but that’s a story for another time. COTT’s collection of documents was a catalyst for the Ricky Ray bill, a class-action lawsuit, and an independent investigation sanctioned by Congress into the contamination of the nation’s blood supply. These efforts were part of a greater mission to hold the responsible parties accountable and to increase product safety.
Under that oak tree at the Capitol, the sorrow was as thick as the humid July air. I first set my eyes on a semi-circle of mostly women facing a podium centered amid a long row of tables where speakers had taken their seats. The women cradled photo collages of their sons, daughters, husbands, brothers, fathers. Al bore their name, birthday, date of death. Snapshots showed graduates receiving diplomas, grooms hugging their brides, fathers holding their infant children, teens blowing out candles at birthday parties. Likewise, collages with yesterday’s smiles draped from the speakers’ tables like holiday linens. Men wore button pins of the wives they inadvertently infected. As a photographer by profession, I understood the importance of documenting history. I raised my Nikon and began taking pictures. No one turned me away. Everyone wanted their loved one’s story to be told. And remembered.
Today, we have an opportunity to preserve our history so that others may learn from past mistakes. COTT has collaborated with the prestigious Archives and Special Collections library at the University of California, San Francisco. UCS is holding a fundraising drive to bring this collaboration to life. Money raised will pay for the indexing and archiving of the documents. Imagine the learning opportunities for medical students, historians, public health advocates, and lawmakers, to name a few. The UCS library houses the AIDS History Project and documents from other public health failures, including the tobacco industry and the opioid crisis.
Tom’s widow, Frances Fahey, sees the donation of COTT documents with UCS as a continuation of Tom’s legacy. COTT did not work in isolation, she said. “COTT achieved its mission through collaboration and close working relationships with all other community and AIDS organizations, such as NEHA, AIDS Action of Boston, Act-Up, and the Peer Association.
I have found solace in NEHA’s commitment to remembering our fallen, attending its candlelight vigils in the late 1990s and early 2000s, and by honoring individuals, including my late husband, at the 60th Anniversary Gala in 2017.
UCSF Archivist Polina Ilieva speaks of the uniqueness of the COTT collection. “The history of medicine has largely been written from the point of view of health care providers, researchers, and public health officials,” she said. “The struggles and experiences of patients, families, and communities are often left outside of the official historical record. Our partnership with COTT allows us to address this imbalance by archiving this pioneering community-based organization’s records and making them accessible to the public.” If anyone wishes to donate their personal records and correspondence from this era, they are welcome to contact Ms. Ilieva.
I understand some may wish to forget about the past and yes, those were painful days, but please know those who crisscrossed legislative office buildings for a decade, often ignoring painful hips, knees, and ankles, or clutching the photographs of their loved ones, did so with the future of product safety in mind. As our bleeding disorders community moves forward and new treatments abound, let us remember past mistakes serve as a cautionary tale for those who make crucial decisions today.
To see the photos that belong with this article, see page 20 of our Summer 2024 Newsletter.
Kathy has been part of the bleeding disorder community since marrying her late husband, David. She is a photographer, writer, COTT board member, and former resident of Nashua, New Hampshire.