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Joseph Burke, age 45 |
It’s a bold claim—but one that, after years of research and verification, I no longer make lightly. This November, I will be celebrating 44 years of living with HIV. And if my findings hold true, I may be the longest-living hemophiliac in North America with an HIV diagnosis resulting from tainted blood products distributed in the early 1980s.
The journey to this realization has been long, personal, and deeply rooted in both history and science. My condition and timeline align with a dark chapter in pharmaceutical history—one in which clotting factor blood products, used to treat hemophilia, were later revealed to have been contaminated with the virus that causes AIDS.
A Letter That Changed Everything
In December 1983, my mother received a letter from Cutter Pharmaceuticals, one of the major manufacturers of clotting factor products at the time. The letter warned that specific LOT numbers of their products might have been contaminated with HIV. Families were urged to check their current supplies and alert their hemophilia treatment centers.
My mother was devastated to discover that the vials in our refrigerator matched the LOT numbers listed in the letter. I had just turned three.
But the symptoms had begun much earlier.
The First Signs
By early 1982, my platelet counts and immune system were already in decline. My mother remembers me being unusually pale, with dark circles under my eyes. I was tired constantly, often falling asleep without warning. Then came the alarming signs—lung congestion, oral thrush, throat swelling, and anemia. These were not typical complications of hemophilia. Something more serious was happening inside my body.
Today, after decades of living through the evolution of HIV treatment, I’m working closely with my infectious disease specialist at the University of Florida to verify the exact timeline of my infection. Based on symptom onset and pharmaceutical disclosures, it’s estimated that I contracted HIV in the spring of 1982—possibly making me the longest-living hemophiliac with HIV in the U.S., if not the world.
Living with a Legacy
Now 45 years old (46 in November) I continue to manage the long-term effects of hemophilia and HIV. The biggest challenges I face today are orthopedic: severely damaged knees, ankles, elbows, and shoulders from years of bleeding episodes. But medically, I am thriving.
More Than Survival
This story isn’t just about survival—it’s about resilience, science, and the power of advocacy. When I was diagnosed, HIV was a death sentence. Today, it’s a chronic condition that I manage while still living fully, working as an artist, and telling my story so others don’t feel alone.
I share this journey not for pity or praise, but to illuminate a piece of medical history often forgotten, and to inspire others living with chronic conditions that longevity—and even thriving—is possible.
If the data continues to confirm what we believe, this November will not only mark a personal milestone, but a historic one: 44 years of life with HIV, and still going strong. This is not to mention I beat a 30 year infection of hepatitis C in 2014 on the breakthrough treatment called “Sovaldi.” It was this 6 month treatment that inspired me to create this very blog, and document my life and struggles from my perspective.