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Advocacy Update - June 15, 2011

June 15, 2011

Advocates in Action

New York – Kena Miller, RN, MSN, FNP at Roswell Park Cancer Institute and member of the IMF Nurse Leadership Board, volunteered her time to meet with state Senators and Assembly members in Albany on Wednesday, June 1 to discuss the oral chemotherapy access bill. She participated in ten meetings to emphasize the importance of the bill and how crucial the passage is to her patients. Kena will be featured as July’s Advocate of the Month. Stay tuned!

New Jersey – Thank you to Paula Van Riper, Central New Jersey Support Group Leader, who provided oral testimony Monday in support of A.2666/S.1834, a bill that would require equal coverage for orally administered chemotherapy and intravenous and injected chemotherapy.  Paula shared her personal story with the committee and spoke on behalf of members of her group who suffer from the high out-of-pocket costs of oral anti-cancer medications.

We are happy to report that the bill passed unanimously in committee! To read more about Paula’s experience, please visit our Advocate of the Month page on August 1st.

Have you visited with your state or federal legislators? Do you have an ongoing relationship with any of your legislators? We want to hear about it! Please email Meghan Buzby at mbuzby@myeloma.org with your story and we will include it in our next Advocacy Update.

Happenings on the Hill
Health Premiums for the PCIP to Be Reduced
The Department of Health and Human Services recently announced new steps to reduce premiums and make it easier for Americans to enroll in the Pre-Existing Condition Insurance Plan (PCIP). Premiums for the federally-administered PCIP will drop as much as 40 percent in 18 States and eligibility standards will be eased in 23 States and the District of Columbia to ensure more Americans with pre-existing conditions have access to affordable health insurance. The PCIP was created under the Affordable Care Act and serves as a bridge to 2014 when insurers will no longer be allowed to deny coverage to people with any pre-existing condition including myeloma.  More information can be found at http://www.hhs.gov/news/press/2011pres/05/20110531b.html.

41 Senators Sign Onto Dear Colleague Letter on Title VIII Funding
Last week Senators Robert Casey (D-PA) and Richard Burr (R-NC) circulated a Dear Colleague letter requesting continued support for research at the National Institutes of Health (NIH). A total of 41 Senators signed onto the Casey-Burr Dear Colleague letter to show their support for biomedical research.  Many thanks to everyone who contacted their Senators.  The final letter can be viewed here.

House Cuts FY 2012 Funding for FDA
The House Agriculture Appropriations Subcommittee cut funding for the Food and Drug Administration (FDA) by $284 million from its FY 11 level of $2.457 billion.  FDA serves as the nexus between new scientific discoveries and routine cancer care as all new cancer treatments must be reviewed and approved by the FDA before being available to cancer patients. It is estimated that there are over 800 new, potentially life-saving, cancer therapies (including for myeloma) currently in development.  The FDA must have enough resources to see these new treatments through the approval process so they will be available to patients as soon as possible.  FDA has not published specifics on what these cuts mean for cancer drugs, but it is safe to assume that a cut in funding could result in a reduction in staff as well as the possibility that the approval times for new drugs including those for myeloma will increase.   This would be detrimental to myeloma patients. 

Upcoming Congressional Recess Periods
The House will be back in their Congressional districts from June 27 through July 1 and the Senate will be out July 4 through July 8. 

For more information about the legislation listed above or any other IMF advocacy initiative, contact IMF’s Director of Government Relations, Christine Murphy at cmurphy@myeloma.org or 703-738-1498.

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