We are international

IMF Advocacy Year in Review

UPDATE: On December 31st, Massachusettes passed an oral parity bill that is now awaiting the Governor’s signature, bringing the number of states that passed a parity bill in 2012 to seven.

As we come to an end of another year, we take this time to look back on all that was achieved thanks to our advocates. This year six new states passed oral parity legislation, and four other states progressed further than ever before. The IMF Advocacy Team doubled in size allowing us to spread our wings and go global to help patients all over the world gain access to the treatments they need to thrive and survive. We also formed a new coalition dedicated to ensuring that patient’s needs are addressed through the implementation of health reform.

Delaware Bill SigningAt the start of the year, sixteen states had introduced oral parity legislation. IMF Patient Advocates testified in a majority of the states to fight for equal access to treatment by sharing their stories of how unequal insurance coverage for oral chemotherapy impacted their lives and the lives of others. A big thank you to all of our testifiers: Paula Van Riper of New Jersey, John Killip of Missouri, Jerry Walton of Virginia, Jim Omel of Nebraska, Kelley Campbell of Delaware, Robert Adler of California, and Dave McPeek of Ohio. IMF led the way to victory in Delaware alongside our fierce legislative hero, State Rep. Deborah Hudson and the Delaware Cancer Treatment Access Coalition.

Our testifiers were not the only voices that made a difference this year. Everyone who emailed or called their legislator on these critical bills made a difference. Over 1100 emails were sent to legislators around the country asking them to stand up for myeloma patients. Every single person who clicked send made a difference in each of our victories.

Postcard FunOur newest program, Postcards for Parity significantly enhanced our work and will continue to do so in years to come. Over 150 advocates called upon their communities and asked people to support the rights of all cancer patients. We collected over 2400 postcards in support of equal access to all forms of treatment. Read about some of our amazing Postcard Collecting Rockstars! In addition, we collected over 850 for state representatives in Michigan, Ohio and Delaware. Although we were unable to pull a win out in Michigan and Ohio, our advocates gave it their all to give us the best shot possible.

As a result of our federal work we secured 54 co-sponsors for the Cancer Drug Coverage Parity Act of 2011 (HR2746). Our advocates and PEAC (Patients Equal Access Coalition) did a great job educating members of Congress on the importance of ensuring equal access and equal out-of-pocket expense for both oral and IV anticancer medications.

Arin and Lisa in KoreaArin Assero launched a new global advocacy program this year using the successful model she started in the US. Working with our international offices and partners, Arin has laid the ground work for 2013 to ensure myeloma patients around the world have access to treatments. In October, Arin visited Korea alongside Lisa Paik, Senior Vice President, Clinical Education & Research Initiatives.

In July 2012, we launched a new national coalition, focused on health policy in specific states, known as the State Patients Equal Access Coalition (SPEAC). The group will focus its efforts on three target states – Illinois, Nevada & New Jersey – with each state establishing its own coalition of state representatives from national SPEAC partners. Each SPEAC coalition will work to ensure that patients have affordable access to comprehensive cancer care, in their state’s Health Insurance Exchange. The group is also supportive of states taking advantage of federal dollars available to expand Medicaid; Nevada & Illinois have both announced they will expand their programs & advocates in New Jersey, will push Governor Christie in the coming months, to do the same.

Through our state and federal work this year we have established the IMF as a leader in the community on access to treatment for all cancer patients. As we move into 2013 we look forward to continuing this work at the state and federal level while also ensuring that quality and affordable cancer care is included in the implementation of the Affordable Care Act.

On behalf of the IMF, we would like to once again thank you for all of your support throughout 2012. Whether you were in Washington on the Hill, meeting with your legislators at the district level, writing in via our Action Center, or attending one of our webinars, it’s all of you, our IMF Advocates that are responsible for our success!!

Stay tuned for opportunities next year to participate in our in-person and webinar training sessions, visits to the Hill, state level initiatives, and of course our Action Center.

We wish you a very safe and happy holiday season!

Yours in Action,

The IMF Advocacy Team!

Arin, Meghan, Aimee and Zina

Advocacy Team

New Stories

December's Advocate of the Month

Kathy Cartwright says, “Call me what you want—daughter, sister, wife, mother, friend, myeloma patient, myeloma survivor and now, myeloma advocate!” Read More

Why Patient Voices Matter

Advocate Jim Mahoney Reports from the Advocacy Lunch and Learn in Atlanta

Update from the Hill

Just before the Thanksgiving holiday, HHS released several long-awaited proposed regulations implementing private insurance market reforms relating to essential health benefits (EHB), actuarial value (AV), fair insurance premiums and employer wellness programs. Together these new policies will reform what health insurance plans cover and what they can charge enrollees for premiums starting in 2014. Read More

Want to join the National Action Team?

We are excited to announce the formal formation of IMF's Advocate Action Team. Starting in January we will have monthly conference calls discussing what the Advocacy Team is working on and how you can make an impact in your community. Email Aimee to join the team!

Not yet a member of the Myeloma Action Network? Click here to sign up!