Jeff Johnson is 40 years old, and for all 40 of those years, he has been living with hemophilia. The genetic disorder prevents blood from properly clotting, which, if untreated, can cause uncontrollable bleeding. Yet, Johnson says, he does not want a cure. He grew up with hemophilia, went to summer camp with kids with hemophilia, and forged some of his closest relationships within the community.
I was interested in speaking to Johnson because new advances in gene therapy and gene editing are making the elusive cure seem closer than ever. At least five clinical trials are currently aiming to fix the faulty genes that underlie hemophilia. The New York Times recently interviewed patients from one gene-therapy trial who no longer had to worry about bruising and bleeding. “They Thought Hemophilia Was a ‘Lifelong Thing,’” read the headline. “They May Be Wrong.” It is unknown how long the effects of the therapy will last.
“I’ve been told the hemophilia cure is around the corner for literally the last 30 years,” Johnson told me with a laugh. “Which I know sounds a little cynical, but when you’ve been around the bend as many times as I have, you kind of start hedging your bets.” He does not speak for every hemophilia patient, of course, but at a time of increasing optimism about cures, his perspective is thought-provoking. Johnson lives in Washington State, and he is actively involved in the hemophilia-patient community. As is not uncommon for patients, he also works for a company that provides contracted services for a specialty pharmacy that dispenses hemophilia drugs.