On June 18, 2014, we hosted a successful Hill Day in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for Disease Control (CDC).
HR 460 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.
https://www.youtube.com/watch?v=OoFqIYmbog4
In total we had:
- 14 community members from 10 different states met with members of Congress and their staff
- 196 people participated in our online Virtual Hill Day and sent letters to their members of Congress
- 127 people and 2 members of Congress attended our Capitol Hill reception
- 4Â ‘Champion Awards‘Â were given during our Capitol Hill Reception to:Â US Senator Sheldon Whitehouse (RI), and US Representatives Lois Capps (CA), David McKinley (WV), Hank Johnson (GA) 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 Patient’s Access to Treatment Act, the Part D Beneficiaries Appeals Fairness Act or for their tireless efforts for patient’s rights and access to care – each of these legislators is truly a Champion.
US Senator Sheldon Whitehouse (RI)
Senator Sheldon Whitehouse was elected in 2006 as the junior United States Senator from Rhode Island. Since taking office, Senator Whitehouse has been a tireless advocate to ensure each American has access to affordable health care. As the Affordable Care Act (ACA) was being debated in Congress, Senator Whitehouse went to the Senate floor numerous times to advocate on behalf of people with hemophilia. During these floor speeches Senator Whitehouse highlighted the extreme cost to treat hemophilia, and the importance of eliminating preexisting conditions and life time caps (both vital to those with bleeding disorders). In 2012, Senator Whitehouse spearheaded a Dear Colleague letter to seek other senators’ support for restoring funds to our vital Hemophilia Treatment Centers. Senator Whitehouse has truly become an ally and friend to the hemophilia community.
There is no other member of Congress that understands our issues more, who makes sure he is at meetings when his constituents with a bleeding disorder come to his office in DC, who requested to take a tour of the Rhode Island Hemophilia Treatment Center, and whose staff goes above and behind to ensure our community has what it needs during our advocacy efforts on Capitol Hill. For this and everything else Senator Whitehouse does on behalf of all those with a chronic condition, we are thrilled to present him with a Champion award.
US Congresswoman Lois Capps (CA)Â 
Congresswoman Lois Capps has been a resident of Santa Barbara, California since 1963 and represents the state’s beautiful Central Coast. She was sworn in as a member of Congress in 1998, succeeding her late husband, former University of California, Santa Barbara professor, Congressman Walter H. Capps.
Congresswoman Capps is committed to helping people improve their daily lives through better schools, quality health care, and a cleaner environment. She is a respected and effective leader in Congress, especially on issues related to public health. As one of the first Members of Congress to Co-Sponsor HR 460, the Patients’ Access to Treatment Act, Congresswoman Capps took leadership in ensuring that all patients with chronic and expensive disease continue to receive their life saving medication. She is truly a Champion.
US Congressman Hank Johnson (GA)
As the U.S. Representative for Georgia’s Fourth Congressional District since 2007, Congressman Hank Johnson has distinguished himself as a substantive, hard-working legislator who delivers results.
Congressman Johnson has consistently supported legislation to ensure that all Americans have access to employment opportunities and affordable health care. As one of the co-sponsors of the Medicare Part D Beneficiary Appeals Fairness Act, Congressman Johnson is fighting to ensure that all Medicare Part D beneficiaries have the right to request lower co-pays for high-cost specialty drugs used to treat chronic illnesses. We are honored to present him with our Champion Award.
US Congressman David McKinley (WV)
Congressman David McKinley has represented the 1st District of West Virginia since 2011. He previously served West Virginia in the state legislature.
As a grandfather to a child with special needs, Congressman McKinley is no stranger to overcoming the obstacles of disabilities. He has long been an advocate for access to health care. While in the state legislature, David authored a West Virginia law which prohibited insurance companies from canceling insurance to individuals diagnosed with HIV.
Congressman McKinley sponsored HR 460, the Patients’ Access to Treatment Act and has long been a Champion for those with chronic illnesses. He is invaluable in the fight of ensuring patients’ access to care and as advocates, we are honored to stand with him in the fight to make specialty treatments affordable. We consider Congressman McKinley a true Champion and are honored to present him this award.
