Insurance companies have started to introduce something called co-pay accumulator programs that have the potential to make hemophilia treatments unaffordable for many patients. It’s of utmost importance that everyone potentially affected understand what they are, what kind of impact they may have on access to care, and what we all can do about them.
Patient assistance charities provide an invaluable service to the quarter of a million Americans living with chronic and life-threatening diseases. The Marketplace Access Project (MAP) is a group of patient advocacy organizations dedicated to protecting nonprofit insurance premium and cost-sharing assistance for these patients. Many families affected by hemophilia rely on this type of assistance to get their factor covered. The Coalition for Hemophilia B is a member of MAP.
As of mid-May 2018, MAP has reached 150 bipartisan cosponsors for the Access to Marketplace Insurance Act (H.R. 3976). This commonsense legislation would protect charitable patient assistance by modifying a policy of the U.S. Centers for Medicare and Medicaid Services (CMS).
In 2014, CMS issued guidance on third-party insurance payments for the Affordable Care Act (ACA) Exchange plans—but CMS failed to include nonprofit charities on the list of acceptable premium arrangements for patients covered by qualified health plans. Citing this misguided rule, insurance companies in 42 states are denying coverage to patients with chronic and expensive conditions by rejecting the financial assistance patients were previously receiving from third-party charities—making it impossible for vulnerable patients to access care.
If passed, H.R. 3976 would allow nonprofits to provide premium and cost-sharing assistance under CMS guidance and require health insurance companies to accept this financial assistance.
Congress should pass H.R. 3976 to ensure charitable patient assistance can continue to reach those most in-need.
Art Wood of Patient Services, Inc., the founding member of MAP, said, “Keeping patients safe is a nonpartisan issue.” He added, “If it weren’t for these donation-based charities helping patients living with rare and chronic conditions cover the exorbitant costs, the government would have to pay up, and only those lucky enough to qualify for public health care programs would receive government assistance. Congress should pass H.R. 3976 and let charities be charitable.”
The Children's Health Insurance Program (CHIP) is a federally funded program that provides health insurance for children of uninsured families who do not qualify for Medicaid. Many families affected by hemophilia rely on this program for their children’s health care. Recently, funding for the program expired and Congress has failed to renew it. Emergency short-term funding was passed in late December but without new long-term funding, the program will end soon.
We urge you to contact your representatives in Congress on this critical issue. When you contact them, please help us create awareness by sharing your personal hemophilia story, and include a mention of the uniqueness of hemophilia B.
The Hemophilia Federation of America, another national organization, has set up a page to facilitate contacting legislators on this issue. It includes telephone, email and Twitter options – just choose the one you are most comfortable with. You can reach the page by clicking HERE.
The National Hemophilia Foundation will host the annual Washington Days program from March 7-9, 2018 on Capitol Hill. This is our opportunity to make sure that the voice of the hemophilia community, including the hemophilia B community, will be heard by our elected representatives.
For more information and to register, please visit NHF's Washington Days page.
Please let us know that you have registered so that we can expect to see you and prepare some special information for you. Send us a message at firstname.lastname@example.org.