On June 22, 2016, we hosted our 3rd 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 and for HR 3742, The Access to Marketplace Insurance Act, 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.
HR 3742 is a bill to amend the Patient Protection and Affordable Care Act to allow for these third party payments. Many nonprofit organizations around the country offer premium assistance for patients with chronic and expensive disorders. In order to properly manage their disorder, patients need the best possible health plans. Those plans often come with high premiums. Many of these organizations also help patients afford their premiums during times of economic or family crisis such as the loss of a job or primary earner, or while patients transition from their parent’s plans onto their own.
As part of our Patient Fly-In and Virtual Hill Day, we had:
- 15 community members from 8 different states met with members of Congress and their staff
- Over 70 Community members around the country participated in our online Virtual Hill Day and sent letters to their members of Congress
- Over 100 people attended our Capitol Hill reception
- 2 Champion Awards were given during our Capitol Hill Reception to: US Senator Tammy Baldwin (WI), and US Representative Kevin Kramer (ND) 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.
Congressman Kevin Cramer (ND)
Kevin Cramer was elected to the U.S. House of Representatives on November 6, 2012. He serves on the House Committee on Energy and Commerce, which has the broadest jurisdiction of any committee in Congress. Rep. Cramer is assigned to three subcommittees: Communications and Technology, Environment and the Economy, and Oversight and Investigations. He also serves as Co-Chairman of the Northern Border Caucus, which fosters continued growth in the relationship between the United States and Canada, and is a founding Chair of the Congressional Kids’ Safety Caucus.
He is North Dakota’s only member of the House of Representatives. Cramer has made constituent outreach a top priority, describing interacting with the public as “the best part of public service.” According to Legistorm, the Capitol Hill government issues website, for the past two years Cramer has held the most town halls of any Member of Congress.
In 2015, Congressman Cramer introduced the Access to Marketplace Insurance Act, or HR 3742, which seeks to add charities to a list of entities that insurance companies must accept premium assistance from. For a patient organization representing those with a rare and expensive genetic disorder, we are very thankful for the work Congressman Cramer as done to promote access to insurance.
Because of the expense of bleeding disorders, and other rare and chronic conditions, our patients need the best possible insurance, and many of our patients rely on charities to assist them with high premiums. It is vital to our community that these charities remain able to do their work and we applaud Congressman Cramer for helping further that cause.
Senator Tammy Baldwin (WI)
Senator Baldwin was elected to the U.S. Senate on November 6, 2012, winning a hard fought race and making history as Wisconsin’s first woman to serve in the U.S. Senate and the first openly gay member elected to the Senate.
In the Senate, Senator Baldwin is committed to working across party lines to strengthen the essential pillars of economic security for the middle class – investments in education and workforce readiness, quality health care for all Americans, building a strong manufacturing economy, and ensuring retirement security for today’s seniors and future generations.
HFA is honoring Senator Baldwin with our Champion Award. For a patient organization representing those with a rare and expensive genetic disorder, we are grateful for the Senator’s support of the States Achieve Medicaid Expansion, or SAME act, which would ensure that current state government policy does not preclude federal assistance in the near future. As a community that was widely affected by HIV/AIDS, we are also thankful for the Senator’s support of the HIV Clinical Services Improvement Act and the HIV Organ Policy Equity Act, which allows scientists to carry out research into organ donations among HIV populations potentially leading to an marked increase in organ transplants.