International Myeloma Foundation
Advocacy Update | November 2020
capitol hill with action center button
doctor writing on a medical chart
Clinical Treatment Act Introduced in the Senate
Many cancer patients with Medicaid face troubling barriers when attempting to participate in clinical trials. One of these barriers include whether or not patient routine costs are covered by their plans. While private insurers and many state Medicaid programs cover these costs, some states do not require the coverage of patient routine costs associated with participating in a trial. This has proven to be a significant barrier to many people who wish to participate and would otherwise qualify.

Bipartisan efforts have long been underway to remedy this issue. Rep. Ben Ray Lujan (D-NM) and Rep. Gus Bilirakis (R-FL) introduced legislation in early 2019 that would require state Medicaid programs to provide this coverage. We are pleased to announce that Sen. Richard Burr (R-NC) and Senator Benjamin Cardin (D-MD) introduced a Senate companion bill, S. 4742 on Sept 29th. The IMF joined with other advocacy groups and sent a letter of appreciation to the Senators for taking leadership on this important issue the letter can be viewed HERE.

IMF’s Robin Roland Levy expressed support for the bill and stated “We know that many populations are underrepresented in clinical trials, particularly African Americans. With African American patients being at higher risk for myeloma, any steps towards increasing participation in trials could be positive step forward. With many clinical trials struggling to recruit patients, trials need to be inclusive and available to all who medically meet the participation criteria to produce the best results. We are thankful to Senators Burr and Cardin for introducing the Clinical Treatment Act in the Senate and believe the passage of this bill would both improve the treatment of diseases like myeloma in the future.”

To contact your Senators and Representatives about this bill, please CLICK HERE.
open enrollment on notebook
Open Enrollment Announcement
It is open enrollment season for Medicare and ACA plans. It is extremely important for myeloma patients to have robust coverage.

ACA Open Enrollment runs from November 1 through December 15, 2020. For more information about how to enroll in an ACA plan, please click here and for more helpful resources to apply for coverage click here.

Medicare open enrollment began on October 15, 2020 and ends on December 7, 2020. As a Member of the MapRx Coalition, IMF’s Advocacy Team helped in the production of a yearly guide to open enrollment. MapRx focuses on bringing together advocacy groups who wish to improve access and affordability within the Medicare Part D program. We hope you will find this document helpful which can be viewed here.

If you have specific questions or are seeking guidance about which plan may be best for you, we suggest reaching out to your state’s State Health Insurance Assistance Program (SHIP). To view state specific information please visit here.
On Tuesday, November 10, 2020, The Supreme Court held oral arguments on a case regarding the constitutionality of the Affordable Care Act. This is an important case for cancer patients to keep a close eye on because the ACA created protections for people with preexisting conditions.

The case surrounds the law’s individual mandate, which is controversial because it requires people to purchase health insurance or face a financial penalty. Congress voted to reduce that penalty to $0, prompting an argument about its constitutionality.

When the case was first announced, many believed the entire law could be invalidated alongside the mandate, prompting the end of the law. That said, following the oral arguments, many legal scholars now believe that Justices who would be key decision makers in this case indicated their belief that the decision surrounding the mandate would not impact the constitutionality of the rest of the law.

IMF’s Robin Roland Levy (who obtained her J.D. from George Mason University in 2001) shared her thoughts about the case. “I believe the oral arguments were encouraging for people with preexisting conditions. IMF has been paying close attention to this court case, because of how important the preexisting condition protections created by the ACA are to cancer patients. The decision also has the possibility to impact our entire health system. While the final decision could occur as late as June, IMF will continue to monitor this situation.”
Medicine and money
Trump Administration Rules
On November 20, 2020, the Trump Administration introduced a series of drug pricing measures. Most notably, one surrounding prescription drug rebates and another about tying the prices of prescription drugs to the prices paid in other nations.

The first proposal impacts drugs administered in a physician’s office and would tie Medicare payments to the cost of drugs in other nations. Those supportive of this idea believe it would decrease Medicare costs. Those opposed express concerns about how this move could impact access to drugs (many drugs available to Americans aren’t available globally) in the future and raise concerns about stifling innovation. Additionally, this rule is likely to face legal challenges from the pharmaceutical industry.

The second proposal of note would eliminate the rebates drug manufacturers pay to pharmacy benefit managers (PBMs). Those supportive of this move point out the secret nature of PBMs and a belief that they drive up patient costs. Those opposed to the rebate rule believe it could actually increase both premiums and drug costs.

The IMF policy team is currently assessing the impact of these proposals and will continue to provide updates.

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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