A new film explores hemophilia, AIDS, and community bonds
'On the Shoulders of Giants' uncovers the impact of the 'tainted blood' era
The Hemophilia Federation of America recently hosted its annual symposium in Indianapolis. Despite my desire to attend, circumstances didn’t align for me this year. One of the event’s highlights was the debut of digital content agency Believe Limited‘s latest cinematic offering, “On the Shoulders of Giants,” now available online. Last weekend, I seized the opportunity to watch it.
The film starts by pointing out that for the first time in history, a generation of people with hemophilia is living past age 50. It follows Wayne Cook, a grandfather with hemophilia, as he embarks on a heartwarming road trip around the U.S. to reunite survivors from his generation. (Cook is also the president of the Coalition for Hemophilia B.) These folks survived both hemophilia and the “tainted blood” era, a period where the blood supply was tainted with HIV and hepatitis, wiping out much of an entire generation of people with hemophilia.
Together, they reminisce on the trials endured, the lives lost, and the enduring bonds of family and friendship. Through their shared reflections, the film uncovers the profound impact hemophilia and AIDS have had on their lives as they navigate the challenges of aging and survivor’s guilt.
The film resonated deeply with me, evoking memories of my own journey. Diagnosed in 1975 with hemophilia B and von Willebrand disease, I was subjected to multiple blood product treatments during the tumultuous “tainted blood” era. My doctors told me I was at high risk of testing positive for HIV.
I often found myself on the outskirts of affected communities, yearning to connect but feeling like I didn’t quite belong. Neither fully fitting in with the male hemophiliac cohort nor finding resonance with those grappling with the devastating impact of HIV/AIDS, mine was a solitary path.
Camp Heartland
However, my activism took root in a different direction, one that aligned with my experiences and passions. My focus shifted toward the younger generation of hemophiliacs, particularly those affected by the scourge of HIV/AIDS.
I found purpose and community through my involvement with the nonprofit organization Camp Heartland, a summer camp for children affected by HIV/AIDS. The majority of campers shared not only their struggles with HIV but also the common thread of hemophilia. I witnessed firsthand the resilience and spirit of these children facing unimaginable challenges.
Camp Heartland offered the children a sanctuary where they could be embraced for who they were, free from judgment or stigma. The children went on tour, speaking about living a life with AIDS at a time when those with the disease were ostracized and barred from many places, including schools and churches. Within this nurturing environment, bonds were forged and a sense of belonging blossomed, not only for the children but for myself.
Though my journey may have taken a different trajectory from those featured in the film, my heart remains intertwined with theirs. Thanks to those advocates, the blood supply is safer for all of us. Their stories serve as a poignant reminder of the collective struggles endured by those who paved the way before us. Let us never forget.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.
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