End-of-year Advocacy Update
By Glenn Mones
This end-of-year review appeared in the Winter 2020 Hemophilia B newsletter
During the last quarter, we learned that insurance companies could still employ accumulator adjusters. These programs, designed to allow the companies to make more money, can prevent a patient from counting third-party co-pay assistance toward their out-of-pocket maximum. Essentially, this means the companies that do this are “double-dipping.” We were advised for a time that these programs would not be applied to hemophilia, but that turned out not to be the case. We are now looking at whether a legislative fix might be necessary.
In a victory, Congress voted to approve the end-of-year omnibus federal spending and economic relief package, which included the provisions of the Hemophilia SNF Access Act. This legislation mandates that patients covered by Medicare will have access to clotting factor during a stay in a skilled nursing facility (SNF). This includes rehabilitation facilities that could be required after a surgery or other hospitalization. This change will also improve overall patient access to these facilities since many have refused to accept hemophilia patients in the past because of fears that clotting factor would not be adequately reimbursed during a stay.
Washington will see substantial changes in 2021 that could positively impact our ability to advance healthcare advocacy goals…. We have already begun our efforts by joining a sign-on letter to President Biden about the importance of health equity and other priorities for healthcare advocates.
This issue has long been on the advocacy agenda of the hemophilia community. It moved forward in January 2020 with the introduction of the bipartisan legislation and was prioritized during the National Hemophilia Foundation’s Washington Days advocacy event in February. The Coalition for Hemophilia B is proud of the role our members played in helping to bring this issue to the forefront. We applaud the entire hemophilia community and the legislation’s sponsors for achieving this important victory.
Washington will see substantial changes in 2021 that could positively impact our ability to advance healthcare advocacy goals. We must be ready to take full advantage of these opportunities. In 2021, our B Voice advocacy program will preserve and expand the best aspects of what we have developed to date, empowering our community with more information, education, knowledge, and “tools you can use,” while also addressing the lack of health equity that many in our community face. Areas of focus will include:
Elimination of co-pay adjustor programs
Elimination of surprise billing
Expansion of Medicaid and other affordable coverage options
Increased focus on health equity within the hemophilia community and beyond
Ensured inclusion on insurance formularies of all approved therapeutic options as prescribed by doctors in consultation with their patients and caregivers
Support for adequate funding models for gene therapy and other novel treatments
Addressing the lack of health equity for women and other underserved populations in our community
We have already begun our efforts with the new administration by joining a sign-on letter to President Biden about the importance of health equity and other priorities for healthcare advocates. With your help, we can make a difference for people with hemophilia and all Americans dealing with chronic conditions this year. Join our efforts!