The first generation of people with hemophilia to live past 50 are aging in a world that doesn’t know what to do with them.
“I never expected to be alive after 12, then 15, then 35, and now I’m 50 and have to deal with a system that’s not ready for me,” said Bobby Wiseman, who has severe hemophilia. and is HIV positive. “We weren’t supposed to age.”
In the 1980s, nearly 90% of people with severe hemophilia, a genetic disease that prevents blood from clotting properly and usually leads to death in young adults, contracted HIV from contaminated blood products used to treat their disease and half of the people with hemophilia in America. is dead. Today, that story has fallen into largely forgotten history, but many of those who survived have now become the first cohort of people with hemophilia in history to live past their 50s, thanks to advances in the treatment of hemophilia and HIV.
“Navigating Time and Space: Experiences of Aging with Hemophilia” is the first research study of this groundbreaking cohort. Sara Schwartz, associate clinical professor at the USC Suzanne Dworak-Peck School of Social Work and member of the National AIDS Memorial Board co-led the study of this little-known chapter of the HIV/AIDS crisis and its implications for survivors. Aging Hemophilia Today with Tam E. Perry, associate professor at Wayne State University School of Social Work.
“As someone who has been active in the HIV and AIDS community for many years, I was blown away and ashamed not to know this story,” Schwartz said. “It’s such a powerful story of resilience. It completely changed my work. They are the first cohort to grow old and it’s important to document their stories and gather information from them while we can.
With support from medical sociologist Charles Kaplan, former associate dean of social work at USC, and Dana Francis, social worker at the University of California, San Francisco, the research team assessed participants across four gerontological domains. keys: personal care, social networks, meaning of home/aging in place, and contributions to productive ageing. Their investigation focused on strategies to optimize functioning, change perceptions of time, and ways to better meet the needs of this underserved population.
“Through this study, the NHF Innovative Researcher Research Award is being presented to a social worker for the first time ever,” said Len Valentino, President and CEO of the National Hemophilia Foundation. “Social workers are part of the essential foundation, along with research and advocacy, to ensure that individuals and families affected by inherited blood disorders can thrive.”
Uncharted territory for aging
For people with hemophilia, a relatively minor injury can turn into a life-threatening bleed if not treated appropriately, so things many of us take for granted as we get older – colonoscopies, cardiac care, residential long-term care – is uncharted territory. for this group and their healthcare professionals. Having survived far beyond their own and everyone else’s expectations, they must stand up for themselves and create a new path for the patients with bleeding disorders who will follow them.
“This research definitely highlights medical needs in my not-too-distant future and beyond,” said Patrick Lynch, 36-year-old filmmaker and health advocate with severe hemophilia. “I will benefit from it, but only if I’m careful.
This cohort of surviving hemophiliacs also faces a host of unforeseen problems associated with aging. Eighty-eight percent of study participants said they were deeply affected by their unexpected longevity. Expecting a short lifespan, most haven’t planned for the future — the practicalities of careers, 401Ks, or savings accounts. Many did not marry or have children, either because their HIV or hemophilia status isolated them socially or because they did not think they would be around long enough.
“It wasn’t in concept to say invest in this because it was like, ‘To hell, I’m going to be dead,'” Wiseman said. “And now it’s all this stuff that I could be here until I’m 85.”
Decades of chronic physical pain, isolation from peers and the disorienting feeling of facing a future they did not expect, along with survivor’s guilt, have also created complex psycho-emotional needs. Overall, study participants called for excellent mental health support tailored to their population, which often includes intersectionality with HIV status, sexual orientation, age, and race.
“It was a medical holocaust,” said Francis, who has focused on the hemophilia community since 1988 and has literally seen many study survivors grow up after children and teens, though many others of their cohort have died. “The younger generation doesn’t know what it doesn’t know. I want that information to be there when they hit 50.”
The study also explores how the perception of a time horizon often influences our actions, emotions, and goals. Using socio-emotional selectivity theory to understand what it means when proximity to death increases rather than contracts, many of these findings may have application in long-term HIV survivors and, as life expectancy increases for typical Americans, broader implications and insights for aging globally.
“It is so important to realize that the stigma and discrimination of marginalized communities has such a corrosive impact on society and that it directly impacts others as well,” said John Cunningham, executive director of the National AIDS Memorial. “In the case of AIDS, the hemophilia community has been devastated, losing half of all people with hemophilia in just ten years. It is important to remember that injustice to one is the injustice to all.
Beyond the Fallacy of a ‘Men Only’ Disease
Schwartz plans to expand her research to include a focus on women with bleeding disorders. Until recently, it was mistakenly believed that men primarily developed hemophilia and women were only carriers. It is now being discovered that women can also suffer from the condition, but because symptoms are often milder or it manifests in longer periods of menstrual bleeding, it has often been overlooked by doctors. As more and more women are being correctly diagnosed, other serious health complications are being discovered as a result of years of iron deficiency.
“I learned about the hemophilia community and what it’s going through today and I just couldn’t look away,” Schwartz said. “It’s a very traumatized and hurt community. They have been neglected, stigmatized and ostracized. I want to share their story and that’s what I will continue to do.
Issues facing an aging population of HIV/AIDS survivors
The National AIDS Memorial hosted a panel of experts and survivors on World AIDS Day 2021, including Associate Clinical Professor Sara Schwartz.