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Advocacy Update
June 2016
06.22.16
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Advocate Spotlight: Tom Hardy and John Killip

Two days before the much-anticipated May 26th ICER (Institute for Clinical and Economic Review) public meeting in St. Louis, IMF advocates John Killip of Kansas City and Tom Hardy of St. Louis participated in a briefing hosted by Patients Rising regarding the potential danger the report poses to patients. The briefing stressed the negative repercussions ICER’s report could have on a patient’s ability to access new, innovative drugs, the use of Quality-Adjusted Life Years (QALYs) and the impact on the overall survival rate of myeloma patients. Representatives from the AIMED Alliance and the Center for Medicine in the Public interest were also in attendance to give testimony.

 

John Killip has been an active member of our ACTION Team and was integral to our efforts to get oral parity legislation passed in Missouri in 2014. He jumped at the chance to participate in the briefing and help amplify the voices of myeloma patients.  John is a nine-year survivor of myeloma and said, “Where would I be if they based the value of my treatment to a five-year survival? It is inappropriate that ICER or anyone challenge the value of that treatment to me, my family or my continued ability to generate income.”

 

Tom Hardy echoed John’s sentiments, “When I was diagnosed with myeloma I was given five years to live. Now I’m alive and feeling very well six years later. I outlived the prognosis thanks to multiple treatments.” Tom also expressed that like many, getting his diagnosis changed his outlook on life. He feels that his life post-cancer is better, and more fulfilling and impactful than ever before. This is just another example of why the use of QALYs in ICER’s report is extremely harmful.

 

We applaud them for taking the time to use their voices as advocates and speak up against the many flaws in the report. If you would like to get more involved in the IMF’s advocacy efforts, please email advocacy@myeloma.org


NIH Appropriations Update

On Thursday, June 9th the Senate Appropriations Committee passed the Labor, Health and Human Services bill for fiscal year 2017 (FY2017). The result was another $2 billion increase for the National Institutes of Health (NIH) and a $216 million increase for the National Cancer Institute (NCI). These increases bring the total FY2017 funding levels to $34 billion for the NIH and $5.3billion for the NCI. This is a huge win for advocacy groups, this is the second year in a row Congress has approved a $2 billion increase for the NIH. Additionally, it is important to recognize that this was a bipartisan effort; the bill passed with a vote of 29-1.

 

There is still a lot of work to be done before the budget is finalized and this bill will have to be voted on and passed by the full Senate chamber. We also have yet to see any action in the House regarding NIH appropriations; however, Representative Tom Cole (R-OK), the Chair of the House Labor, Health and Human Services Appropriations Subcommittee, has hinted that he will work towards matching the funding levels set forth by the Senate.

 

We will be sure to update you on developments in the appropriations process as they happen. If you would like to ask your Representative for their support on increased funding for the NIH you can click here to send an email through our Action Center.


An Update on the Cancer Moonshot 

On Monday, June 7th, Vice President Joe Biden spoke at the American Society of Clinical Oncology meeting in Chicago to help launch a new system that will facilitate the sharing of genomic and clinical data among cancer researchers to help promote advances in personalized treatment for the many forms of the disease.  The project, known as Genomic Data Commons (GDC), with an operation center at the University of Chicago and funded by the U.S. National Cancer Institute, is a key component of Cancer MoonShot 2020 and President Obama’s Precision Medicine Initiative.

 

“It is our hope that Genomic Data Commons will prove pivotal in advancing precision medicine,” Biden told a hall packed with oncologists and researchers.

 

The overall goal of the Cancer Moonshot effort is to form a more collective approach to curing cancer.  The idea is that cancer cannot be cured by just one person, one organization, one discipline, or even one approach.  Instead, the effort will form new alliances of innovation and accelerate the prevention, diagnosis, treatment and ultimately a cure.  Whether you represent industry, government, a health system, non-profit, philanthropy, a research institute, a professional society, patients, or others, you must share how cancer and specifically myeloma has touched your life.  Share your story here

 

In the coming months, Biden and his team will be highlighting new, specific, and measurable steps that organizations and communities across the country are taking.


Take Action: Support Young Researchers at the NIH

On September 9th, Senator Tammy Baldwin (D-WI) introduced S. 2014, The Next Generation Researchers Act. The goal of this legislation is to create more opportunities for young, emerging researchers and to make it easier for them to receive grants for their work.

 

It is already difficult for the newest generation of researchers to get grants, and the decline in NIH funding has made it even harder. Previously, talented researchers from around the world who once flocked to the US to pursue training and stayed for our innovation driven economy, are now returning to better opportunities in their home countries. The impact of losing a generation of investigators and medical innovators will have repercussions.

 

S. 2014 will remedy this problem by creating the Next Generation Researchers Initiative at the NIH. It will direct the NIH to coordinate policies and programs with the goal of increasing opportunities for young researchers and promoting earlier research independence.  Please take a moment to ask you Senators to support S.2014! To send an email, click here.


Check Out Our New Facebook Pages!

Want to know more about what the advocacy team is up to? Then go like our new and improved Facebook pages! We have revamped our IMF Advocacy page and will be sharing the latest news on legislation and policies we are tracking and updates on our fight to get oral parity passed at the state and federal levels.  Click here to like us and ask your Facebook friends to do the same! 


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