Mesothelioma Advocates Can Call Upon the Rare Disease Congressional Caucus to Bring Attention and Funding to the Disease
by Nancy Meredith
Mesothelioma patients, and other patients and their families battling one of the thousands of rare diseases in the United States, once again have a voice in congress with the re-establishment of the Rare Disease Congressional Caucus. Led by U.S. Reps. Leonard Lance (NJ-7) and Joe Crowley (NY-7), the 112th Congressional Caucus will “provide an important forum in Washington for the exchange of ideas and information related to rare diseases,” Lance said.
In the United States, a rare or orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. Mesothelioma, an aggressive form of cancer primarily caused by exposure to airborne asbestos fibers that is diagnosed in 3,000 Americans each year, shares the orphan disease distinction with other well-known diseases including colon cancer, multiple sclerosis, AIDS, and cerebral palsy. Between 85 and 90 percent of the orphan diseases are serious or life-threatening.
The goals of the caucus, according to the congressmen, are to bring Congressional attention to the nearly 7,000 known rare diseases that currently have no approved therapies, ensure sufficient funding for research and orphan product development and to explore ways to incentivize companies to create new drugs, biologics and humanitarian use devices. The caucus also provides an opportunity for Members of Congress, families, and advocacy groups to exchange ideas and policy concerns.
“Patients and families affected by a rare disease have been without a light at the end of the tunnel for far too long,” said Rep. Crowley. “With one out of every 10 Americans suffering from a rare disease, it is absolutely critical that we do all we can to identify research opportunities, therapy options, and treatment.” Crowley, Chairman and CEO of Amicus Therapeutics, was the inspiration for the 2010 motion picture, “Extraordinary Measures” that chronicled his family’s decade-long search to find a cure for a rare illness afflicting two of their children.
Rare diseases have begun to get more attention in the United States. This year the NIH announced the International Rare Disease Research Consortium committing “to the development of 200 new rare disease treatments by the year 2020 and the development of diagnostics for all rare disorders.” The DoD continues to offer grants to fund mesothelioma research and is seeking applications for the 2011 award cycle.
Also, September 26th was established as National Mesothelioma Awareness Day through a Presidential proclamation. This does not require renewal and is designated for 2011 and for every year into the future. Rare Disease Day is observed on the last day of February every year.
Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), said, “We are grateful to Congressmen Leonard Lance and Joe Crowley for the reestablishment of the Rare Disease Congressional Caucus in the 112th Congress. The changing health care environment creates special challenges for patients with rare diseases and we who advocate for the rare disease community seek to assure that federal policies are consistent with the health needs of patients.”
Find information on how to encourage a member of Congress to join the Rare Disease Caucus on NORD’s website.
