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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. 

Federal Work

IMF and All Cancers Congress Advocate for Greater Cancer Treatment Access from Express Scripts

  • Cancer Leadership Council - Feb 2021
    Six Protected Classes Patient and Provider Letter
    On February 4th and 5th, IMF supported coalition letters sent to HHS Secretary-Designate Xavier Becerra opposing a proposal that would modify Medicare’s protected classes policy.

    As background, Medicare’s 6 Protected Classes policy requires Medicare plans to provide coverage of “all or substantially all drugs” within a class, including antineoplastic drugs, which are often used to treat cancer. This policy was created to ensure that patients who depend on certain medications are able to access their medications without barriers.

    Policy changes pertaining to Medicare’s protected classes are particularly important to patients with myeloma because many patients are treated with combination therapies. Our patient population would be adversely impacted if health plans had the ability to opt not to provide coverage of these drugs.

  • ACC Vaccination Prioritization Letter:
    On January 26, 2021, the International Myeloma Foundation led a group of cancer advocacy organizations in sending a letter to states regarding COVID-19 vaccine prioritization for cancer patients. Because many cancer patients are especially vulnerable to the effects of COVID-19, we want to ensure that patients are prioritized above the general public.

  • The International Myeloma Foundation joined group efforts and signed onto the Cancer Leadership Council letter to the CDC’s Advisory Committee on Immunization Practices advocating for patients

  • IMF Letter to Center for Medicare and Medicaid Services
    On January 20, 2021, the International Myeloma Foundation sent a letter to the Center for Medicare and Medicaid Services objecting to the Interim Final Rule with Comment Period entitled “Most Favored Nations Model” (MFN). This proposal would tie the prices of Medicare Part B (physician administered) drugs to those of other countries. While this initially may sound like it would be a good idea that would lower prices, the proposal itself states that the savings would occur because patients would lose access to their medications. It also acknowledges that patients could also be forced to seek care in other settings. Additionally, policy experts believe this would adversely impact patients as well as care providers. Many experts also estimate that it could also provide minimum impact when attempting to reduce what patients are paying out of pocket. In addition to our individual efforts, IMF joined several group efforts explaining the system wide issues that would occur.

    IMF believes myeloma patients could be disproportionately impacted by the proposal. There are 4 myeloma specific drugs on the initial list of drugs the proposal would begin with additionally, there are many other drugs included which are used to treat many of the side effects patients may be experiencing. Click the link above to read the IMF Letter.

  • 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.

Disability Discrimination in COVID 19 Response for Congress 

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. 

Support Cancer Drug Parity During COVID 19 

Help flatten the curb and keep patients home to reduce health system stress during the pandemic through the Cancer Drug Parity Act. 

Support H.R. 5637, the Michael Lecik Military Firefighters Protection 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.

Support the Burn Pits Accountability Act

116th Congress H.R. 663 and S. 191 burn pit accountability act

Support the Cancer Drug Parity 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.

Support the Henrietta Lacks Enhancing Cancer Research Act of 2019 

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. 

Support the Clinical TREATMENT Act

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.

IMF’s comments on the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs

Our Advocacy Team conveys to the Administration the perspectives and experiences of myeloma patients affected by high out-of-pocket drug costs.

 

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