The International Myeloma Foundation is committed to action on issues that affect patients and their families. Through our advocacy efforts, we ensure that the patient perspective is heard when legislators consider important and impactful changes to our national health care system. Our advocacy team regularly meets with congressional staffers on wide ranging issues from those that impact patient access to drugs, such as oral parity legislation, to fighting for increases in research funding through agencies like the National Institutes of Health.
Equally important are the efforts of our patient advocates. The advocacy team trains and guides patients and family through the pitfalls of patient activism at the federal level and provides opportunities for every patient to take action from their own home. With your help, the IMF supports legislation that betters the lives of multiple myeloma patients nationwide.
IMF and All Cancers Congress Advocate for Greater Cancer Treatment Access from Express Scripts
- IMF Letter:
- On June 25th, the International Myeloma Foundation sent a letter to Dr. Steve Miller, Chief Clinical Officer for Cigna, which is the parent company for the pharmacy benefit manager Express Scripts. The letter addresses concerns with the exclusion of two myeloma treatments, Ninlaro and Xpovio, from formularies that Express Script manages. While Medicare patients are not affected, the IMF is concerned at the lack of access for patients whose oncologist prescribes these treatments as the best and most effective for them. We are especially concerned for patients who already take these treatments, as no grandfathering system appears to be in place, and no exception process is apparent. The IMF will continue to press this issue with Dr. Miller and Express Scripts until we are satisfied that patients have access to every doctor recommended therapy they need to battle myeloma.
- ACC Letter:
- On June 30th, the All Cancers Congress (ACC), a collection of like-minded cancer organizations working together to the benefit of their patients, also sent a letter to Dr. Miller. Like the IMF letter, The ACC letter addresses concerns with the exclusion of cancer treatments from formularies that Express Script manages. The ACC is especially concerned for patients who already take these treatments, as no grandfathering system appears to be in place, and no exception process is apparent.
Every patient must be treated as an individual, not a diagnosis. This means that the mere fact that a patient may have a diagnosis of cancer cannot be a basis, even in part, for denying care or making that person a lower priority to receive treatment.
Help flatten the curb and keep patients home to reduce health system stress during the pandemic through the Cancer Drug Parity Act.
This bipartisan piece of legislation would create a presumption of service connection for diseases associated with firefighting, which includes myeloma. By creating this presumption of service connection for military firefighters.
116th Congress H.R. 663 and S. 191 burn pit accountability act
The Cancer Drug Parity Act (H.R. 1730 in the House and S. 741 in the Senate) ensures fairness in cost-sharing for all anticancer regimens. Health insurance cost-sharing schemes should not create barriers to cancer patients' ability to access potentially life-saving medicines.
H.R. 1966, The Henrietta Lacks Enhancing Cancer Research Act of 2019. The bill would require a study to be conducted on what the barriers are to participation in clinical trials.
H.R. 913 aims to improve access to clinical trials for Medicaid enrollees by requiring states to provide coverage of routine patient costs in connection with participation in qualifying clinical trials.
Our Advocacy Team conveys to the Administration the perspectives and experiences of myeloma patients affected by high out-of-pocket drug costs.