Read About the Legislation Featured at Lobby Day
During Rare Disease Week 2014 in Washington D.C. over 160 rare disease advocates lobbied for 3 main pieces of legislation and asked their legislators to join the Rare Disease Legislative Caucus.
HR 460, Patients’ Access to Treatments Act
Patients with rare diseases pay extremely high out-of-pocket costs because their prescribed medication is often placed on a “specialty tier.” Specialty tiers allow plans to impose high coinsurance, in lieu of a co-payment, for expensive drugs, resulting in higher out-of-pocket spending for patients. Not only does this place a financial burden on patients, but it has also been shown to discourage adherence to treatment, which can increase overall costs to the healthcare system. HR 460 would require plans to limit cost-sharing requirements for specialty drug tiers to the level of cost sharing required for non-preferred brand drug tiers.
HR 3116, The MODDERN Cures Act
Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network
Policies like the MODDERN Cures Act incentivize the development of treatments and cures for unmet medical needs – such as autoimmune diseases, neurological conditions, cancer, and rare diseases. Typically, medicines for these kinds of medical needs take longer than average to develop. Legislation like this could help speed the process along and bring treatments to the hands of patients who desperately need them. MODDERN establishes a “dormant therapies” class for drugs that treat complex conditions with few or non-existent treatments, and allow these therapies additional years for patent and data protection to incentivize their development. It would advance research into personalized medicine by encouraging the development of companion diagnostics tests, helping doctors easily identify appropriate and effective treatments. And, it would allow patients greater and timelier access to newly FDA-approved diagnostic tests.
HR 1591, CAL Undiagnosed Diseases Research and Collaboration Network Act
The “Network” 1591 will help reduce the length of time and number of physicians it currently takes to diagnose patients with a rare disease by creating a professional physician collaboration network and providing a means to collect and analyze information on undiagnosed cases. The bill would help individuals and military service members and veterans who have unexplained symptoms and medical problems by establishing an undiagnosed diseases registry. Currently there is not a registry that helps physicians and researchers diagnose and treat those with unexplained conditions.
Rare Disease Congressional Caucus
The bipartisan Rare Disease Congressional Caucus is lead by Representatives Leonard Lance (R-NJ) and Joseph Crowley (D-NY) to promote awareness of rare disease issues. Our goal for the Caucus is to grow House membership and formalize the Caucus in the Senate.