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advocacy update

Advocacy Update - March 21, 2012
03.27.12

March 21, 2012

Advocates in Action

Delaware – HB 265, the Delaware Cancer Treatment Access Act passed the House yesterday with a unanimous vote! This is the first step toward passage of this critical legislation in Delaware.

On March 14, Advocacy Director Arin Assero and IMF patient Kelley Campbell testified in front of the Economic Development/Banking/Insurance/Commerce Committee on behalf of the IMF and all myeloma patients in Delaware. In addition, the IMF lead Delaware Cancer Treatment Access Coalition was represented by the many patient advocacy organizations that participate. These members include the American Cancer Society, Susan G. Komen for the Cure Philadelphia, Delaware Breast Cancer Coalition, and National Patient Advocate Foundation. The IMF has been hard at work building and maintaining the group in support of this important piece of legislation.

HB 265 would require health insurance plans in Delaware that cover cancer treatments to provide coverage for orally administered anti-cancer medications on a basis no less favorable than coverage for intravenously administered or injected anti-cancer medications.

Thank you Kelley for your initiative and hard work!

Virginia – Great news! The oral chemotherapy access bills in Virginia, SB 450 & HB 1273 are headed to Governor McDonnell's desk for signing. These bills will eliminate the cost disparity between oral and IV chemotherapy treatment and thereby decrease the out-of-pocket costs to patients.

Please help us TODAY by sending an email to Governor McDonnell to ask him to please sign SB 450 & HB 1273. Help ensure that all cancer patients in Virginia have access to all approved anticancer medications!

IMF’s Newest Advocacy Team Member
Please welcome our new Grassroots Liaison, Aimee Martin! Aimee is the newest member of our Advocacy team and will be responsible for reaching out to advocates like you and motivating you to take action on important issues across the country that impact myeloma patients.

Aimee joins our team to help improve the lives of people living with multiple myeloma (MM).  She will contribute her knowledge of grassroots lobbying and organizing to help pass federal and state legislation, thereby improving access to quality care for MM patients while raising MM awareness across the country.

She earned her degree in Government and Economics at Connecticut College in 2007. Since graduating, she has been traveling the country working on advancing legislation in California, Maine, New Jersey, and Maryland. In each of those states, Aimee created volunteer action teams that continue to be active and she looks forward to doing the same at the IMF.

Moving forward you can expect to receive all action alerts, advocacy updates, and other emails from Aimee.

Happenings on the Hill

US Food and Drug Administration Hosts Patients for a Rare Disease Day:
    On February 29th, the Food and Drug Administration (FDA) invited advocates to participate in their Rare Disease Patient Advocacy Day. This very well attended event provided patients with primers on how the FDA regulates drugs, medical devices (such as knee replacements), and lab tests. Special attention was paid to the programs that review treatments for rare diseases, such as myeloma, and patients had the opportunity to interact with senior FDA officials from throughout the agency. Of interest, the FDA provides $14 million in grants each year to fund clinical trials for rare diseases. Throughout the day, patient advocates had the opportunity to have their questions answered and voice their concerns. Many criticized the length of time it takes the FDA to review and approve new drugs, especially for patients where no other good treatments currently exist. Others asked to have more patient representation in the FDA’s advisory committees and panels, which assist the FDA when reviewing applications for new treatments to be approved. A common message conveyed throughout the day was that patients’ perception of risk may differ from the regulators’ perception. The FDA may think that the small improvement in symptoms is not worth the potential risk of the drug; however for a patient, that improvement might feel so significant, that he or she is willing to risk the side effects. The FDA officials listened to this concern and acknowledged that it would be helpful to have more patients advising the FDA and advocates also suggested creating a workshop to focus on risk perception.
    Last, the FDA discussed the steps they are taking to address drug shortages. Recently, some pediatric drugs and cancer drugs have been in short supply. One of these drugs, Doxil, can be used to treat myeloma. To address the shortage of Doxil, the FDA is temporarily allowing the importation of a replacement drug, Lipodox, which is expected to end the shortage and fully meet patient needs in the coming weeks.


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