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Advocacy Update

Advocacy Update:
September 2015


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Help Us Educate Congress on Patient Access

On September 30th, Representatives Lance (NJ) and Higgins (NY) will be hosting a briefing at the Cannon House Office building to discuss the federal oral parity efforts and the impact the issue has on constituents. A panel comprised of stakeholders from all sides of the issue will hold a dialogue about the various vantage points from which this legislation can be approached. Included in the panel will be a patient, caregiver, physician, pharmaceutical industry expert, and Meghan Buzby, Senior Director of Advocacy for the IMF. If you are interested in attending or would like to encourage a member of your representative’s office to attend, please click here for more details. 



Educational Resources

Affordable Care Act FAQ

Medicare and the Affordable Care Act

Multiple Myeloma Insurance Questionnaire

North Carolina Oral Parity Advocate Highlighted in Local News 

Despite legislators in North Carolina continuing to grapple over the budget in a special legislative session, the campaign to get an oral parity law passed continues!

Last week Greensboro’s local CBS affiliate, WFMY, aired a story about the impact lack of parity is having on North Carolinians. Eric Dunlap, who is living with leukemia, shared his story. Right now he is paying almost $50,000 a year for Tasigna, the oral anticancer medication he relies on to keep him alive. You can watch the story here.

Stories from advocates like Eric are the reason oral parity legislation has been successfully passed in 40 states and the District of Colombia. Next year, we will be a part of campaigns in Alabama, Alaska, Michigan, South Carolina and Tennessee. If you live in these states and have an oral parity story to share, please contact the advocacy team at advocacy@myeloma.org.

Take Action on Federal Legislation

Support Oral Parity in the Senate

Support Oral Parity in the House 

Blue Water Navy Bills

Increse NIH Funding

Support National Myeloma Awareness Month 

Calling All Advocates!

Attention, patient advocates! As Congress is now back in session after the August recess, we need your help in brining on additional cosponsors for our federal oral parity bills, H.R. 2739 and S. 1566. PEAC coalition members were busy meeting with members’ offices while they were on break; however, they need to hear from you as their constituents. These bills are critical to ensuring that patients have access to their life-saving medications and can maintain a higher quality of life. To reach out to your representatives, please click here, and to reach out to your senators, please click here

Additional Resources



Oral Chemo Parity Map

National Health Service set to Discontinue Some Drugs in the UK 

Patients in the United Kingdom learned this month that the National Health Service (NHS) Cancer Drug Fund will shortly discontinue the use and funding of Imnovid® (pomalidomide) and Revlimid® (lenalidomide) for certain instances of treatment for multiple myeloma. Imnovid® will be discontinued for those who have previously received treatment with Velcade® (bortezomib) and Revlimid®. Revlimid® will be discontinued for patients at first relapse who have received prior treatment with Velcade. Please note that all other uses of Revlimid will not be affected. These restrictions will take effect in the next two months.

Patients who are currently taking these drugs will not have funding withdrawn.

Celgene, the company that manufactures both drugs, is exploring options through the National Institute for Health and Care Excellence (NICE) to make the drugs available to all myeloma patients. For more information, please click here.




Fun Facts!

Babe Ruth hit his first professional home run in Fayetteville, NC on March 7, 1914!

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