By MaryBeth Grewe
Timothy Ray Brown, the first and only person to be considered cured of HIV, has been the topic of a great deal of discussion and commentary. From case reports to news articles and blog posts, many researchers, reporters, and other interested individuals have written about his life and his health. Timothy Ray Brown has not remained a silent bystander in this whirlwind of commentary; he has granted many interviews about his experience (including this one on the searcHIV blog) and has even started his own public-benefit corporation, the Cure AIDS Coalition, with his colleague Dave Purdy. Now, Timothy has again spoken up in the commentary he wrote for the Journal of AIDS Research and Human Retroviruses, titled “I am the Berlin Patient: A Personal Reflection.”
In this autobiographical account, Timothy Ray Brown shares his experiences starting with his HIV diagnosis in 1995. He provides a detailed account of his experience being treated for cancer and receiving two bone marrow transplants from someone with the CCR5 mutation that prevents the entry of HIV into a cell. Something we often don’t hear about in news reports is just how difficult his recovery was after the second bone marrow transplant. Timothy states that after the transplant, “I became delirious, nearly went blind, and was almost paralyzed.” His descriptions of these personal sacrifices and painful side effects are reminders of why bone marrow transplants are not a feasible solution for curing HIV among the general population. Such a procedure is costly and dangerous, and if not needed for treating a cancer like in Timothy Ray Brown’s case, too risky a strategy in looking for a cure. Reading about Timothy Ray Brown’s experiences also highlights the fact that patient experiences are often not portrayed in research articles. It is important to remember that behind case reports and statistics are individuals who are making sense of and experiencing research and clinical care in their own way.
Timothy Ray Brown ends his commentary by discussing his decision to release his name to the public, no longer being the anonymous “Berlin Patient,” and his motivation to support efforts towards curing HIV. This commentary is a reminder of just that – Timothy Ray Brown is not an anonymous patient, but a research participant, outspoken activist, and key social and political figure in HIV cure research efforts. He also remains the only person in the world with first-hand experience of an HIV cure.
