International Myeloma Foundation
Advocacy Update | September 2020
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Drug Pricing Executive Orders and Actions
Drug pricing has been an issue talked about in Washington for quite some time. The month of September has been very busy in this front. President Trump has introduced several new executive orders and ideas to address high prices. Those who have expressed approval of these actions believe they are necessary because Congress was unable to act on the issue of high prices. However, others are critical of the actions and believe these orders are an election year move to garner support, could impact innovation, and may offer little in out-of-pocket savings to patients.

The orders and announcements have to do with a variety of subjects, including tying the cost of drugs to what people in other countries pay, the importation of certain drugs from Canada (drugs included in this order are unlikely to impact myeloma patients), and providing of $200 prescription drug cards for Medicare patients. Actions have also been announced pertaining to preexisting conditions as well as the prevention of surprise medical bills. It is currently unclear how many of these orders and ideas will be executed or impact patients and many logistical questions have already been raised.

We will continue to monitor what is happening and engaged as this process continues. We promise to provide you with updates as this continues to unfold. If you have questions in the meantime, please feel free to contact us at
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IMF Asks Congress for Increased Medical Research Funding
Representatives from IMF’s advocacy team joined with hundreds of other advocates on the Thursday September 17th “Rally for Medical Research.” The event was created to give advocates and scientists the opportunity to petition Congress for increased medical research funding. The event included advocates from nearly every state in the country.

Robin Roland Levy, IMF’s Senior Director of Public Policy and Advocacy spoke of the event saying “I felt it was very important for our team to participate in this event and ensure the voices of myeloma patients and researchers are heard in Washington. We used this opportunity to educate legislators about the progress that has occurred in myeloma research over the past decade and more importantly, about the advancement that needs to occur in the future. We need to ensure researchers are receiving the funding they need to move us closer to a cure for myeloma.”
capitol hill
IMF Endorses Bill
The International Myeloma Foundation joined with a large group of patient access in signing a letter to Congressional leaders advocating for the passage of H.R. 7647, the Preserving Patient Savings on Drug Costs Act. The bill would prevent a policy from going into effect that could increase what some patients pay out-of-pocket for their drugs substantially.

The Department of Health and Human Services’ (HHS) 2021 Notice of Benefit and Payment Parameter (NBPP) rule includes language that would allow copay accumulator programs to be implemented. These programs cause patients to face high out-of-pocket costs because they prevent manufacturer copay assistance from being counted towards a patient’s yearly out-of-pocket limit. Policies like these are particularly harmful to people living with conditions like cancer who depend on copay assistance to access their drugs.

Representative McEachin (D-VA) and Representative Davis (R-IL) introduced legislation that would ensure patients do not face the burdens of increased drug costs during the COVID-19 pandemic and delay the implementation of this harmful policy. We are proud to endorse this bill and help shepherd it across the finish line.

To contact your Member of Congress about this bill, please click here.
Veterans Against Myeloma Focuses Efforts on Burn Pit Related Legislation
The International Myeloma Foundation’s Veterans Against Myeloma (VAM) program has been working to accelerate the passage of legislation that would help veterans who have developed myeloma due to the toxic exposures they faced during their time serving our country. This month, specific focus has been placed on legislation that would help burn pit victims and make improvements to the current laws surrounding burn pit exposures. To learn more about burn pits and view the various opportunities to contact your Members of Congress about legislation about this important issue, please visit

Want to get involved?

Interested in learning more or taking actions about our federal and/or state priorities? Email the IMF Advocacy Team,, to find out ways you can help and make your voice heard. Find us on the Twitter and Facebook! We will be sharing the latest news on legislation and policies we are tracking. And follow @Chemoparity for updates on our fight to get oral parity passed at the state and federal levels.
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