State of Reform was proud to host an informative conversation with Amber Freed, founder and CEO of SLC6A1 Connect, Steven Gray, director of the UTSW Viral Vector Facility, and Brenda Gleason, president of M2 Health Care Consulting, about gene therapy’s capacity for treating individuals living with rare diseases in Texas. These leaders sat down with … Read more
Several noteworthy bills were discussed in recent health committee meetings in the Arizona Legislature. Senate Bill (SB) 1163 was introduced at the Senate Health Committee meeting on Feb. 2. Sponsored by Sen. Nancy Barto (R – Phoenix), the bill would allow an eligible manufacturer, pursuant to all federal safety rules and guidelines, to … Read more
Gene therapies have yielded promising results for individuals experiencing rare diseases. However, these groundbreaking therapies come with their own unique set of challenges regarding who will be able to access them, how much they will cost, and how the policymaking and scientific processes will conflict as more and more therapies undergo clinical trials. … Read more
Gene therapy has proven to be a groundbreaking treatment for individuals living with rare diseases like muscular dystrophy and cystic fibrosis. However, while emerging gene therapy treatments have the potential to be lifesaving, they are also posing significant affordability challenges for patients. In our upcoming conversation on Jan. 18, “5 Slides We’re Discussing: Gene therapy … Read more
Our second newsletter for the month of November, 2021, features a breakdown of federal health policy developments from columnist James Capretta, our recent “5 Slides We’re Watching” conversation on gene therapy and rare diseases, and insight on addressing the youth behavioral health crisis. As always, Thanks for reading our stuff! Eli Kirshbaum State of … Read more
Groundbreaking gene therapy treatments have tremendous potential to provide treatment to the around one in ten Americans living with rare diseases. But these game-changing therapies also bring with them new challenges, including how the individuals who need them most will get access to and be able to pay for these expensive treatments. To tackle this … Read more
Recent weeks have seen a flurry of election announcements for statewide positions. This month’s edition of “5 Things” features a Q&A with former State Senator Jill Tokuda who recently announced she will again run for lieutenant governor. We’ll reach out to more candidates in the coming months for conversations on their visions for the future … Read more
Another week of interim committee meetings kicked off on Monday in preparation for the 2022 legislative session. With session in mind, this edition of “5 Things” features some of the health policy conversations take place and legislation being filed ahead of January 11, 2022. As always, thanks for reading. If you have story ideas or tips … Read more
Gene therapy has proven to be a promising treatment for rare diseases like muscular dystrophy. As these life-saving treatments enter the market, however, their high costs pose affordability challenges for individuals living with rare diseases. In our upcoming virtual conversation, “5 Slides: Gene therapy and the promise for rare disease,” we will host … Read more
We’ve been hard at work putting together the Topical Agenda for the 2022 Washington State of Reform Health Policy Conference coming up on January 6. We’ll announce that agenda in the coming weeks, but if you already know that you want to join us, be sure to take advantage of the Early Bird registration pricing. These discounted rates … Read more