Gene Therapy Patient Experiences for NPR Access Report

Reporter hoping to hear about ACCESS to gene therapy I'm a reporter at NPR (hi! me: https://www.npr.org/people/825275572/sydney-lupkin) working on a story about access to gene therapy. I heard from someone who has had issues even getting the workup to find out if he can get Luxturna – or into a trial for another drug – because of his insurance and the state he lives in. I’d be very curious to hear from members of this community about their experiences trying to get access to gene therapy. You can reply here or reach out to me via email at [email redacted] or on Signal at sydneylupkin.36. I’d love to talk to a few patients and get some voices on the radio, but I know that’s not for everyone. So if you have something to share that you think I should know but don’t want to be interviewed, everything helps! Thank you! (Also thanks to the Mods for permission to post!)