A group of rare disease advocates from New Jersey met with their local, U.S. Congressman Leonard Lance last week to discuss the status of U.S. House of Representatives’ bill, “21st Century Cures”. This bill would change the way patients get treatment for their illnesses, making drug therapies and other treatment options more readily and more conveniently available. This legislation is extremely important to rare disease sufferers. For the more than 30 million Americans and their families affected, passage of this bill could mean treatments for those suffering from rare diseases that were previously neglected.
The bill passed in the House of Representatives on July 13, 2015 and is now being reviewed by the Senate Committee on Health, Education, Labor, and Pensions. Many advocates from around the country are currently planning similar visits during this time of In-District Lobby Days, when representatives meet with local constituents. Congressman Lance co-leads the U.S. Rare Disease Congressional Caucus with Congressman Joseph Crowley of New York.