This week saw a group of bipartisan senators – Sherrod Brown (D-Ohio), Sam Brownback (R-Kan.) and Al Franken (D-Minn.) – introducing the Creating Hope Act: legislation to encourage pharmaceutical and biotechnology companies to focus more intently on cures for rare diseases that affect children and which today have no treatments. A rare disease is one that affects fewer than 200,000 Americans. Neurofibromatosis affects 100,000, and has no treatment available, so could stand to benefit from this bill. The bill aims to offer incentives to industry such as faster approval at the Food and Drug Administration, and expands on a 2007 law offering “priority review vouchers” to companies that developed drugs for tropical diseases (this has also traditionally been a neglected area).
This is another development in a series of promising changes that we have seen this year both in the government, and in industry, in terms of increasing interest in finding treatments for rare diseases. Click here for article in ‘The Hill’.