On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled nursing facilities.
HR 1600 prohibits insurance companies from charging more for drugs that they place on a specialty tier than drugs on their non-preferred drug tier. When clotting factor is placed on a specialty tier, the co-insurance payment for the patient can range from 20% to 50% of the total cost of the drug, like clotting factor.Â
In total we had:
- 9 community members from 9 different states met with members of Congress and their staff
- Community members around the country participated in our online Virtual Hill Day and sent letters to their members of Congress
- Over 100Â people attended our Capitol Hill reception
- 4 Champion Awards were given during our Capitol Hill Reception to: US Senator Bill Cassidy (LA), and US Representatives Diana Degette (CO), Cedric Richmond (LA), and Fred Upton (MI) for their tireless advocacy efforts
We also  hosted a Congressional Reception to honor members of Congress that have done extraordinary work for those with chronic and expensive disease. Each of our honorees received our Champion Award. Whether it be for their work with the ensuring affordable healthcare coverage or  working to modernize care in this country, each of these legislators is truly a Champion.
US Senator Bill Cassidy (LA)
Senator Bill Cassidy, from Baton Rouge, Louisiana, assumed office in January of 2015 after having served in both the Louisiana State Senate and the U.S. House of Representatives. He has been actively involved in issues ranging from national security to health care and education, and has been one of the foremost proponents for third party primary assistance from nonprofit entities.
In 2014, Senator Cassidy worked with nonprofits to address the issue of premium assistance by reaching out to the Center for Medicaid and Medicare Services, admonishing an interim rule that has been interpreted as preventing 3rd party nonprofits from providing premium assistance to patients most in need. Having worked as a physician for those both those with and without insurance, Senator Cassidy understands the need for premium assistance, especially for low-income families. The Senator remains an active proponent for cost-effective insurance policies and quality primary assistance policies for those who need it.
Congresswoman Diana DeGette (CO)
Congresswoman Diana DeGette represents Colorado’s 1st district. Throughout her time in Congress, Congresswoman DeGette has been extremely influential in making policy that has benefited those with bleeding disorders and has also been active in the medical community as a whole. Since elected to serve in 1997, she has pursued repeal to the ban on stem cell research and has been a strong advocate for women in the health community. Currently, she is spearheading the campaign for 21st Century Cures, fighting for modern methods of treatment in a modern world. Partnering with Representative Upton, Congresswoman DeGette is advocating for better methods of drug approval through the FDA as well as better drug development methods through organizations like the NIH. Their initiative seeks to bring the medical community and medical policy into the modern era, where rapidly changing technologies have the ability to dominate and revolutionize the medical world.
Congresswoman DeGette was also highly influential in the passing of the Affordable Care Act, having drafted key portions of the bill and served as Vice Chair of the Committee on Energy and Commerce, which heard one of the original versions of the bill. Her position as a Chief Deputy Whip also helped her gain support for the bill among both Democrats and Republicans, leading to its final signing into law by President Obama.
Congressman Cedric Richmond (LA)
Congressman Cedric Richmond represents the Second District of Louisiana. Congressman Richmond is a proud member of a multitude of caucuses, two of which he serves as co-chair. He has strongly supported recent overhauls in the healthcare system brought about by the Affordable Care Act. Understanding the adverse effects of lacking access to care, he has been an important advocate for the individual mandate and health care coverage for all Americans. He was an early supporter of Medicaid expansion in Louisiana, and continues to bolster this effort in order to ensure proper care for the citizens of his home state.
Congressman Richmond has opposed budget cuts for medical research. He has also taken a stand against proposed decreases in funding to national facilities and other research institutions, which would surely create roadblocks to cures and treatments.
Congressman Fred Upton (MI)Congressman Fred Upton represents the Sixth District of Southwest Michigan. Â Throughout his career, Congressman Upton has placed a special importance on public health. In 2010 he was elected Chairman of the Energy and Commerce Committee, presenting him with greater opportunity to solve healthcare issues. As Chairman, Congressman Upton has supported improvement of the drug approval process as well as the advancement of generic drugs and biosimilars. He has promoted quality care for the elderly by further securing physician Medicare reimbursement. Additionally, he has focused on protecting children’s health by fighting a shortage in pediatric care and furthering knowledge on rare and genetic disorders.
Congressman Upton has stressed the importance of biomedical research in relation to improving public health. He has recently teamed up with Congresswoman Diana DeGette to introduce the 21st Century Cures initiative. This initiative calls for a review of current practices in both the science and healthcare delivery fields. A comprehensive analysis of this information will shed light on ways to streamline the discovery, development, and delivery of cures for diseases in America.
