International Myeloma Foundation
Advocacy Update | July 2020
Pandemic Response and Parity Call
As Republicans and Democrats continue to negotiate the next COVID relief package in Congress, we are in need of your help. Neither the House nor Senate relief proposals currently include the Cancer Drug Parity Act. The bill would improve patient access to orally administered medications, which we believe is especially important right now.

Insurers cover oral drugs differently than IV cancer therapies and the bill would ensure they are covered in the same manner, ensuring patients are able to access the right drugs for them. With many treatment plans being reexamined as a result of the pandemic, the bill could help keep people safe at home right now when medically appropriate.

The bill is a top priority for the entire cancer community and we are continuing to pressure lawmakers. We need your help! To contact your member of Congress about this please click HERE. Please feel free to share the link with friends and family to increase our impact.
IMF Works to Ensure Future Myeloma Treatments Are Accessible
On July 9th, The International Myeloma Foundation provided comments to CMS regarding a proposal they released surrounding CAR T-cell therapy. The proposal from CMS creates a specific diagnostic code for CAR T-cell therapy, which we believe would improve access for patients and provide certainty to providers. We shared several myeloma specific concerns with CMS with the goal of ensuring this promising technology is available for myeloma patients in the future.

Our comment letter can be viewed HERE.
Trump Executive Orders
On July 24, 2020, President Trump released four executive orders aimed at reducing the prices of prescription drugs. The first order would require Federally Qualified Health Centers to pass discounted prices on insulin and epi-pens onto patients. The second allows for the importation of certain drugs from Canada. The third addresses rebate reform, and the fourth and most controversial would tie the prices of drugs in Medicare Part B (administered in a physician’s office) to costs in other countries. The fourth order has not been formally released, and it is uncertain if it will come to fruition.

While aimed at reducing prices, the orders do not come without controversy. Many health care policy experts believe the orders would do little to decrease patient out-of-pocket costs. Others opposed fear the order tying costs to other countries would negatively impact patient access, particularly to new drugs.

We share concerns about access and have actively raised them in the past as similar proposals tying costs to those in other countries have been released and debated. We don’t currently know the specifics about this proposal and how patients could be impacted, however, we are closely monitoring the situation and preparing to act if there is any indication patients could be adversely impacted.
CDMRP Myeloma Programs Receive Funding
We often talk about the Congressionally Directed Medical Research Programs (CDMRP) in this newsletter; asking for patients to serve as consumer reviewers with the CDMRP’s Peer Reviewed Cancer Research Program (PRCRP) and updating readers on the appropriations progress of CDMRP/PRCRP, which is how the program funds its research into diseases such as myeloma. Inclusion as an eligible disease for CDMRP funding requires a yearly lobbying effort by the IMF Advocacy Team, as at least one member of both the House and Senate must request the inclusion of blood cancers as a topic area in PRCRP.

Due to the time it takes to determine which research to fund and negotiate contracts for award money, we are only now getting the full scope of research funded under PRCRP for fiscal year 2018 (FY18), which was the first year for myeloma to be reintroduced as an eligible disease area.

And so, it is with some excitement that we share over $2.2 million has been steered towards myeloma specific research for FY18. Just this month, a major award of $1.4 million was finalized for Dr. Fenghuang Zhan of the University of Arkansas for Medical Sciences (UAMS) to study the molecular genetics and drug resistance of multiple myeloma. The National Institutes of Health has awarded a joint grant of $1.74 million towards this research as well.

Relapses of myeloma and other types of cancers are often caused by these drug-resistant cells. Dr. Zhan believes a protein called CD24 may serve as a reliable indicator of the presence of these drug-resistant myeloma cells and that a therapeutic antibody called SWA11 could be used to target them. Learn more about Dr. Zhan’s program here.

UAMS is not the only research center awarded funding. University of Iowa and Wistar Institute both received six figure awards for myeloma specific research.

We are immensely proud of our efforts to keep CDMRP alive and fully funded. We will continue to push for the inclusion of blood cancers within PRCRP and keep our readers updated on new developments on research and consumer review opportunities.

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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