This December has been a roller coaster for rare diseases and especially for us in the Angelman community. We started out the month with stars in our eyes at the 2017 FAST Global Summit. As we learned at the annual meeting, scientists from around the world came together and revealed that several therapies are ready to make the leap from the lab to clinical trials, ready for the green light. Sadly, hope was simultaneously diminished with the newest draft of the Tax Reform Bill of 2017, which cut the Orphan Drug Tax Credit in half. The Orphan Drug Tax Credit (ODTC) is part of the Orphan Drug Act that is designed to allow drug manufacturers to claim a 50% tax credit on orphan drug research and testing costs. Because rare diseases are financially risky due to their small markets, this is a huge setback. This change creates an obstacle in the path between treatments and patients who need them, including people with Angelman syndrome expectantly waiting for the new therapies. The reduction in the ODTC is a tough blow to the Angelman community, especially after such an inspiring weekend, but progress will continue. Efforts are continuing to communicate with congressmen about the repercussions of this change in the Orphan Drug Act on people with rare diseases.
For more about this story, click the link below: An Interview with Terry Jo Bichell, Orphan Drug Tax Cuts