The Patients Who Don’t Want to Be Cured

August 29, 2018

(The Atlantic) – 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.

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