In this election year, a good way to practice being politically active is to write a letter supporting a bill with the catchy name Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT)!
The bill was originally introduced by Representative Gus Bilirakis (R-FL) in 2014, but never went anywhere.
Now it has new life as part of the 21st Century Cures discussion bill. Reps. Bilirakis, Butterfield (D-NC), and McCaul (R-TX) have co-sponsored the stand-alone version of the OPEN ACT, which was officially introduced on Friday, February 13th as HR 971.
135 patient organizations have signed in support of the bill.
Ashleigh found hope in a medicine for rare diseases (categorized as an “orphan drug”), but she and her family struggled mightily to access that medicine.
Now, if a physician thinks that a drug approved for epilepsy might also help a patient with one of XYZ rare diseases, and s/he prescribes that drug, s/he’s prescribing off label.
Because the medication market for rare diseases is small, drug manufacturers don’t make as much money on them.
There’s no financial incentive for the company to spend time and resources developing treatments for a disease that only affects a small population of patients.
OPEN ACT incentivizes drug makers to research the possibility of broadening the label of existing medications that doctors have found benefits patients with a rare disease.
According to Bilirakis, this bill would mean helping millions “by ensuring medications are safe and effective for rare conditions and can be reimbursed through insurance coverage.”
See more at The Tampa Tribune.
If you want to show your support for the bill, write to your state’s congresspersons! Don’t know who your representative is? Find out here. Don’t know who your state senator is? Click here.
And if you want to be a Rare Disease Advocate, check out RareAdvocates.org .
