The U.S. House of Representatives on July 10th passed the 21st Century Cures Act by a lopsided 344 to 77. The bill would increase funding to the National Institutes of Health by nearly $8.75 billion over five years and increase funding to the Food and Drug Administration by $550 million over the same period.
The FSH Society’s testimony to the U.S. Congress on FY2016 spending urged lawmakers to call for NIH to increase annual spending on FSHD research from the current $7 million to $21 million.
The Act, which requires the FDA to streamline its drug approval process, allow more flexible clinical trial designs, create incentives for companies to focus on rare diseases, and incorporate patient experience into its decision-making process, has been greeted as a victory by many patient advocacy groups. But some observers have expressed concern that the pressure to fast-track new drugs could allow unsafe medications to reach consumers without adequate scrutiny.