While President Trump hopes to overhaul tax credits, Arkansas patient advocate Andrea Taylor is trying to rescue a tax credit that benefits the rare disease community.
Taylor’s 9-year-old son, Aiden, suffers from a rare connective tissue disorder. She joined others like her at a rally organized by the National Organization for Rare Disorders.
House Republicans have proposed eliminating the orphan drug tax credits which was passed as part of the 1983 Orphan Drug Act and offered a number of incentives for people suffering from rare diseases. The act saved lives, and by removing it congress runs the risk of ruining lives.
The development of orphan drugs created a big business monopoly in recent years, accounting for 7.9 percent of total drug sales in 2016. Due to the small patient populations, the companies don’t hesitate to jack their prices for these medicines. According to an estimate made by EvaluatePharma, the go-to source for drug analytics, among the top 100 drugs in the U.S. the annual cost per patient for an orphan drug was $140,443 in 2016.
It’s not just parents of rare disease children that are advocating against the tax cuts. Dr. Aaron Kesselheim, a professor of medicine at Harvard Medical, is very much against eliminating it.
“We need to think about ways we can improve the Orphan Drug Act and stop people from gaming the system and exploiting it,” Kesselheim said in an interview with NPR. “But there are a lot of rare diseases that don’t have treatments. So, we need to be careful in making changes.”
NORD advocates will continue to fight against the tax cut and see if their voices will be heard and make a difference.
