INSIDE LOOK: 21st Century Cures July 15, 2015 by Kylie Karley What is the 21st Century Cures bill? Co-sponsor of the bill, Fred Upton, describes our current situation as such: patients who need “the next generation of treatments and cures, but they do not have until the next generation to wait.” This bill was designed to update, and effectively, accelerate the drug development process. It is funded by the federal sale of oil from the national reserve. What does this bill actually do? Guarantees 8.75 billion dollars to the National Institute of Health (NIH) AND, 550 million dollars to the Food and Drug Administration (FDA) over the course of the next five years In that regard, 21st Century Cures will be a huge win for the rare disease community by: Ensuring mandatory funding for the NIH Providing funds to the FDA to streamline the clinical trials process Incentivizing the development of “orphan products,” which are medical products intended for the diagnosis, prevention, or treatment of rare diseases Paving the way for the development of new cures and treatments for the 7,000 rare diseases—including NS—which currently have no approved treatment Now that I know what the bill does, what can I do? The legislative initiative, 21st Century Cures, was passed in the House on July 10, 2015. HOWEVER, our work is not finished. Before this bill can become a reality, it must also pass the Senate. Stay tuned for advocacy alerts from NephCure to see how you can get involved!