TAKE The team called for an out-of-pocket cap for Medicare recipients. In the traditional Medicare program, there is no annual dollar limit for out-of-pocket expenses. If a Medicare Out-Of-Pocket Cap is implemented, Medicare patients would have a yearly limit on their out-of-pocket drug expenses.
Robin Roland Levy, IMF Senior Director, Public Policy & Advocacy
Danielle Doheny, IMF Director, Public Policy & Advocacy
IMF ADVOCACY INFLUENCES REGULATORY MATTERS, LEGISLATION, AND RESEARCH FUNDING The IMF, through individual comments and coalition efforts, sent numerous letters to legislators on policy proposals that may impact the myeloma community. These comments were in response to proposed federal government rules and the President’s executive orders. One of those rules was the Centers for Medicare and Medicaid Services (CMS) inpatient prospective payment system (IPPS). The IMF’s collaborative advocacy work resulted in the creation of a MS-DRG (diagnostic code) for CAR T-cell therapies. Also, the advocacy team ensured the myeloma community’s interests were heard during COVID19 negotiations, including those for oral parity and telehealth.
To improve patient access to oral chemotherapy drugs, the IMF Advocacy team endorsed H.R. 1730/S. 741, The Cancer Drug Parity Act. This legislation will prevent insurers from imposing higher cost-sharing for orally administered drugs versus intravenous (IV) therapies. Because of COVID-19, this bill gained more importance since some patients were transitioned onto oral drugs when medically appropriate. Other legislation endorsed by the IMF includes: • H.R. 913*, The Clinical Treatment Act: This bill would improve access to clinical trials for patients with Medicaid. • H.R. 1966*, The Henrietta Lacks Enhancing Cancer Research Act: This bill would require a study to be performed about barriers that exist for patients who are underrepresented in clinical trials. • H.R. 7647, The Preserving Patient Savings on Drug Costs Act: This bill ensures patients aren’t faced with the financial burdens that stem from co-pay accumulator programs. These programs prevent manufacturer assistance from being counted towards a patient’s yearly out-of-pocket limit. *signed into law The IMF, in collaboration with various coalitions, advocated to increase funding for the National Institutes of Health, the National Cancer Institute, and the Food & Drug Administration, helping scientific progress and bringing new therapies to patients more quickly.
VAM successfully recommended consumer reviewers to the PRCRP’s myeloma panel. This action gave patients and caregivers the opportunity to decide which research gets funded.
VETERANS AGAINST MYELOMA REPORT In 2020, the IMF’s Veterans Against Myeloma (VAM) program focused on making sure multiple myeloma remains recognized as a serviceconnected disease and launched a new firefighters initiative. VAM ensured myeloma researchers are able to apply for grants through the Peer Reviewed Cancer Research Program (PRCRP) within the Congressionally Directed Medical Research Programs (CDMRP). The PRCRP is a program through the Department of Defense. It allows researchers to apply for grant funding researching diseases specified by Congress. Each year, the IMF meets with relevant offices on Capitol Hill to guarantee that blood cancers remain as a topic area for research. 16
On January 1, 2020, the Blue Water Navy Vietnam Veterans Act took effect. This law restored the presumption of Agent Orange exposure to an estimated 60,000 veterans who served within 12 nautical miles off the coast of Vietnam during the Vietnam War. It also makes it easier for this population to receive care and benefits from the VA. Myeloma has been directly linked to Agent Orange exposure. The IMF Advocacy team worked for the law’s passage and continues to monitor its implementation. Other VAM initiatives include revising the Guide to Benefits for veterans, supporting burn pit registry legislation, and advocating for legislation that would help military and civilian firefighters access benefits.
