Until there is a cure there is the IMF

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2 Training Team Arin Assero Director of Advocacy CURE (2873) ext. 232 Meghan Buzby Grassroots Liaison Christine Murphy Dir. of Government Affairs Christina Vargas State Government Affairs

3 IMF Advocacy Goals To hear your concerns and translate them into appropriate public action whenever possible To empower individuals to advocate for critical health issues that affect the myeloma community To influence government to act on the needs of the myeloma community To raise public awareness of myeloma and the IMF

4 The Cancer Patient Statement of Principles Launched at ASCO 2009, the principles are the roadmap for IMF s advocacy initiatives Prevention is the key to reducing the burden of cancer Continuing innovation is critical to early diagnosis and better treatment Equality of access to care is imperative Early approval of new treatments for deadly cancers is essential Patients who have exhausted approved therapies need simplified access to experimental treatments whenever possible

5 Become an Advocate Sign Up for Action Network 1. Visit: 2. Click on JOIN US 3. Fill out the basic information form 4. Click submit!

6 IMF 2011 Advocacy Agenda Ensure equality of access for all cancer patients Require insurance coverage for anticancer regimens regardless of delivery method including, but not limited to oral and IV drugs, injections, surgery, radiation, transplantation, etc. Maintain the key provisions of health reform essential for high quality of care for cancer patients such as: Affordable access to basic and catastrophic health care coverage for as many Americans as possible. Elimination of "pre-existing conditions" as a barrier to health care coverage. Elimination of annual and lifetime caps on insurance coverage. Closing of the Medicare "donut hole."

7 IMF 2011 Advocacy Agenda Reform and streamline policies and procedures for early approval of new cancer treatments Implement a more efficient mechanism for early approval of off-label uses of already approved medications, based on registry data, actual clinical practice, peer reviewed studies and National Comprehensive Cancer Network (NCCN) guidelines without the expense and delay of complex and timeconsuming clinical trials. Develop and promote an efficient and effective solution to permit access to unapproved and experimental therapies for patients who have exhausted other available possibilities.

8 IMF 2011 Advocacy Agenda Support innovation to develop more effective cancer treatments Reinvigorating the war on cancer by enacting legislation that will provide patients access to life-saving therapies and early detection screening technologies. Launching the Cures Acceleration Network at the National Institutes of Health to support translational research to quickly move research from the lab into new drugs and therapies available to patients.

9 IMF 2011 Advocacy Agenda Support research uncovering the causes of cancer Provide $35 billion to the National Institutes of Health (NIH) and $5.7 billion to the National Cancer Institute (NCI) Allocate $6 million to the Geraldine Ferraro Blood Cancer Program at the Centers for Disease Control and Prevention (CDC) Provide $2.857 billion to the Food and Drug Administration as an investment in regulatory process in order to improve the pipeline of drug delivery; and Increased funding for the Peer-Reviewed Cancer Research Program (PRCRP), funded through the Department of Defense (DoD) Congressionally Directed Medical Research Programs (CDMRP)

10 PEAC Patients Equal Access Coalition Goals Ensure that all major stakeholders are represented in some way Ensure patient access to all available approved treatments regardless of delivery method Educate policy makers at all levels about the impact of disparities in reimbursement Ensure that a federal bill is enacted as a floor so that current and future enacted state laws are not preempted Ensure that federal legislation does not contain loopholes with unintended consequences for the patient Ensure that progress continues at the state level Participants Leukemia & Lymphoma Society Lymphoma Research Foundation Susan G. Komen for the Cure Advocacy Alliance Ovarian Cancer National Alliance Colorectal Cancer Coalition (C3) American Cancer Society Cancer Action Network National Patient Advocate Foundation

11 Impacting State Legislators: Effective Advocacy for Oral Cancer Drug Parity Legislation in TX

12 Oral Cancer Drug Parity Background ~25-35% of the products in the oncology pipeline are oral agents As more oral oncology therapies emerge, many health plan benefit designs have not kept up with these advances = inequity and access problems Many health plans cover IV/infused therapies under the medical benefit, while placing oral therapies in the pharmaceutical benefit Result: Higher out-of-pocket costs for patients for oral therapies

13 Legislative Success State laws passed in 11 states and D.C. Require private insurers to cover oral cancer medications on par with injectable or infused drugs from a patient costsharing perspective Oregon (2007/2008) in effect Indiana (2009/2010) in effect Iowa (2009/2009) in effect Hawaii (2009/2010) in effect Washington, D.C. (2009/2009) in effect Vermont (2009/2011) Minnesota (2010/2010) in effect Colorado (2010/2011) Kansas (2010/2011) Connecticut (2010/2011) New Mexico (2011) Washington (2011) No impact on Medicare Part D or Medicaid

14 IMF State Level Successes 2010 Connecticut Secured advocates to give oral testimony at the hearing Submitted written testimony CT bill was signed by Governor Rell on 5/18/2010!! New Hampshire- bill to establish a committee and conduct a study of the issue of oral drug parity Secured advocate to give oral & written testimony at the hearing The governor signed SB 510 on 6/21/2010! Maryland Secured advocate to give oral & written testimony at the hearing California Secured advocate to give oral & written testimony at the hearing Washington Gave testimony in public hearing in June

15 IMF State Level Success in 2011 New Mexico Secured advocate to provide oral testimony to the House, Health & Government Affairs Committee where it passed unanimously Had patients / caregivers write to the Governor Governor signed into law on April 4, 2011 Law scheduled to go into effect on June 17, 2011

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17 California Illinois Missouri New York Ohio South Carolina Tennessee Texas Wisconsin States to watch in 2011

18 Texas Oral Parity Legislation HB 438 An Act relating to health benefit plan coverage for orally administered anticancer medications. A health benefit plan that provides coverage for cancer treatment must provide coverage for a prescribed, orally administered anticancer medication that is used to kill or slow the growth of cancerous cells on a basis no less favorable than intravenously administered or injected cancer medications that are covered as medical benefits by the plan. Author: Rep. Senfronia Thompson Sent to Governor for signing! Please visit our Action Center to send Gov. Perry a message asking him to sign the bill: click on Issues & Legislation

19 How is lobbying state legislators different? Average Size of a US House District: ~700,000 people Average Size of a State House District: ~55,000 people Access to your legislator--within district and at state capitol--is easier Your ability to personally impact your state legislator is enormous! One constituent contact = 10 Constituents are the key

20 Common Lobbying Do s & Don ts Know who represents you Utilize the IMF Action Center Build a relationship Best time to lobby is when you don t need anything from the legislator Never threaten, never burn bridges, always express thanks Do your homework About the legislator AND the issue Leave a positive impression Bring leave-behind document for legislator/staff Personalize business card with the issue Know what you need from the legislator and ask for what you need Never leave without asking: Can I count on your support? Utilize the IMF Advocacy Toolkit

21 Advocates Making a Difference Wisconsin West Bend support group members Dick Skalitzky, his daughter Shauna, Sue Enright (support group leader), Tom Chelius and IMF team member Christina Vargas participated in A Day at the Capitol in Madison at the end of April. Volunteers from all over Wisconsin gathered to meet with state legislators about the Oral Drug Parity bill being considered. Each patient shared his/her personal story with myeloma and stressed the importance of access to ALL treatments regardless of how they are administered. The group is featured as our May Advocates of the Month. And Tom s personal account will be featured in next Myeloma Today. Dick Skalitzky, Shauna Skalitzky, Sue Enright, Tom Chelius, Christina Vargas

22 Advocates Making a Difference New Mexico David Cowan, from Eunice, NM shared his story with the House, Health & Government Affairs Committee. It passed unanimously and then passed the full House floor vote Was signed by the Governor on April 4, 2011 David was featured as our Advocate of the Month for April. Read his story on the IMF website under our advocate of the month archives.

23 Advocates Making a Difference Connecticut Robin & Michael Tuohy, Support Group Leaders from Waterbury, CT gave testimony in support of SB 50 to the Connecticut Senate Insurance and Real Estate Committee. It was signed into law in Robin & Michael were featured as our Advocates of the Month last year. For those interested in reading their story, please me. Governor Rell signing the bill

24 Advocates Making a Difference New Hampshire Tom Liebert, Support Group Leader from the New Hampshire / Maine group testified April 2010 in support of SB 510 before the House Consumer Commerce Affairs Committee. Bill was signed into law last year to set up a study commission to review the disparities and the ways different states have addressed them and to make recommendations for further legislative action. Tom was featured in an article in the Portsmouth Herald in April If anyone is interested in reading the article, please me.

25 Advocates Making a Difference California Caethe outside of the California State Capitol building in Sacramento Caethe Goetz, Support Group Leader in Northern California, provided oral testimony to both Assembly and Senate committees on behalf of oral drug parity legislation in California. The bill passed both Houses. Sadly the bill was vetoed by Gov. Schwarzenegger. The bill has been reintroduced this year with hopes that the new Governor will sign it into law. Caethe s story can be found on our website under our Advocate of the Month archives. She was featured in October 2010.

26 Advocates Making a Difference DC Marti Hill, Support Group Leader of the Tampa / St. Petersburg FL group, visits with her 2 Senators and Representative in 2010 Jack Aiello, Support Group Leader of the San Francisco support group, visits with his 2 Senators and Representative in 2010 Jerry Walton, Support Group Leader of the Norfolk, VA / Northeast NC group, visits with his 2 Senators and Representative in 2010 Billy & Joanne Gunther, grandson and wife of myeloma patient Bill Gunther from MD, participate in the OVAC Lobby Day in 2010

27 Helpful Advocacy Resources Action Center: Advocacy Toolkit: Advocacy Homepage: & click on Advocacy Tab at top of page Myeloma Advocacy Update Alerts Cancer Patient Statement of Principles

28 Upcoming IMF Seminar Dallas Patient & Family Seminar July 15 th & 16 th Omni Hotel Park West Dallas, TX More info: n?tabid=7&querypageid=4&eventca tegoryid=0&eventid=507