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Advocacy Update
October 2015
10.22.15
 
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Briefing on Oral Anticancer Treatment Access a Success 

Last month, the IMF advocacy team participated in a Capitol Hill briefing hosted by Representatives Lance (NJ) and Higgins (NY) to discuss their federal oral parity legislation, H.R. 2739. The Congressmen spoke about the importance of the bill and the positive impact it would have on patients. A panel comprised of stakeholders from all sides of the issue held a dialogue about the importance of the legislation from each of their perspectives. Included in the panel were a patient, caregiver, physician, pharmaceutical industry expert, and Meghan Buzby, Senior Director of Advocacy for the IMF.  

When asked about her role in the briefing, Meghan said, “It was a privilege to moderate the oral anticancer treatment access briefing hosted by Representatives Lance and Higgins. All of our speakers did an excellent job and we added eight additional cosponsors due to our efforts!”

 We look forward to the progress on this issue and will continue to provide updates as they become available.  

Educational Resources

Affordable Care Act FAQ

Medicare and the Affordable Care Act

Multiple Myeloma Insurance Questionnaire

Support the Part D Beneficiary Appeals Fairness Acts

Representatives Hank Johnson (D-GA) and Walter Jones (R-NC) introduced the Part D Beneficiary Appeals Act in conjunction with Senators Bill Nelson and Susan Collins on June 3, 2015. HR 2624 and S 1488 aim to allow chronically ill seniors to seek exemptions from their Medicare Part D plans that could lower their cost sharing for specialty drugs. The legislation is in response to the rise of tiered benefit plans, which categorizes high-cost drugs and requires patients to pay 25 to 33 percent or more of the drug’s total cost. Currently, seniors are prohibited from seeking exemptions, which is a basic right given to beneficiaries throughout the rest of the Part D program.

With breakthrough oral therapies helping myeloma patients lead longer, healthier lives, this issue is more important to our community than ever.  Please contact your members of Congress to tell them how critical it is to have affordable access to treatments. You can email your Representative here , and your Senator here .

Take Action on Federal Legislation

Support Oral Parity in the Senate

Support Oral Parity in the House 

Part D Beneficiary Appeals Fairness Act

Blue Water Navy Bills

Increase NIH Funding

Support National Myeloma Awareness Month 

Upcoming Webinar! 

 

Please join the IMF Advocacy team on Wednesday, November 11 from 7:00 – 7:30 PM EST, for a special presentation on Clinical Pathways. Pathways are a mechanism used by insurers to make health care costs more predictable by prescribing a course of treatment in which the type and timing of specific therapies are pre-determined. The presentation will go over how pathways are developed, so that you can make more informed decisions about your care. It will also cover how to talk to your physician about how these pathways are structured within their practices and whether they have placed you on a particular pathway. To register, please click here. We hope to see you there! 

Additional Resources

SPEAC

PEAC

Oral Chemo Parity Map

What Are Coalitions?

 

By now, you are familiar with the IMF’s PEAC and SPEAC coalitions, but you may not be familiar with the host of others we participate in! Coalitions are a great way for patient advocacy organizations to weigh in on and influence different areas of public policy and regulatory measures. They help organizations come together, discuss various policy and regulatory issues, then formulate responses to policies and give suggestions on how to make them the best for patients. The IMF is a member of many coalitions, but three we  most engage  in are One Voice Against Cancer (OVAC), Cancer Leadership Council (CLC) and Regulatory Education and Action for Patients. (REAP).

OVAC’s main focus is to ensure that the government provides the investments in cancer research programs that are necessary for breakthrough developments in the understanding of the disease, as well as treatments. Since it’s establishment in 2000 OVAC has grown to become a very effective lobbying organization that has helped educate policymakers on the need for funding increases in cancer programs.

The CLC’s mission is  to ensure that cancer patients have access to high-quality care. Topics followed by the coalition include quality of cancer care, palliative care and survivorship, funding for biomedical research, approval process of new drugs, and much more.  Over 30 organizations participate in CLC meetings, which ensures that broad perspectives and experiences are included in all of the council’s positions.

Finally, REAP works to contribute information and perspectives about important health care regulations to advocacy groups to help them better understand how proposed policies and regulations will affect their patient populations. REAP works to ensure that the voices of all its 61 members are heard and considered in policy development and that those policies maximize access to care while minimizing unintended consequences of those enacted policies.

As you can imagine, our coalitions keep us pretty busy! They serve as a way for the myeloma community  to be heard during the policymaking and regulatory processes. If you’d like to know more about these coalitions, and see others that we are involved with please click here

 

Fun Facts!

IMF Global Advocacy Executive, Ray Wezik, got married this month! Congratulations, Ray! 

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