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The Mesothelioma Applied Research Foundation's team of experts is available to answer your questions about mesothelioma, its symptoms and treatments as well as options available to you. This help is a free service. We are not a law firm. Read more about the Mesothelioma Applied Research Foundation.

TO GET HELP CALL: (877) End-Meso or (877) 363-6376 or fill out the form to the right to be contacted by us.

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Advocate

Action Alert: THE MARY JO LAWYER-SPANO PATIENT REGISTRY ACT

We urgently need your help to establish a mesothelioma patient registry! We need 68 representatives (in addition to those listed below) to sign on to the bill before it can be brought to the House floor for a vote. If your congressional representative is not listed below, they have not signed on to the 'Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2017'. This latest bi-partisan bill was introduced in the new Congress this past March.

Co-Sponsors:

Rep. Collins, Chris [R-NY]
Rep. Donovan, Daniel M., Jr. [R-NY]
Rep. Garamendi, John [D-CA]
Rep. Grijalva, Raul M. [D-AZ]
Rep. Jeffries, Hakeem S. [D-NY]
Rep. King, Peter T. [R-NY]
Rep. Lipinski, Daniel [D-IL]
Rep. McCollum, Betty [D-MN]
Rep. Walz, Timothy J. [D-MN]
Rep. Velazquez, Nydia M. [D-NY]
Rep. Zeldin, Lee M. [R-NY]
Rep. Connolly, Gerald E. [D-VA]
Rep. Norton, Eleanor Holmes [D-DC]
Rep. Comstock, Barbara [R-VA]
Rep. Upton, Fred [R-MI]
Rep. Joe Kennedy, III [D-MA]

Rep. Dent, Charles W. [R-PA]
Rep. Reed, Tom [R-NY]
Rep. Pocan, Mark [D-WI]
Rep. Stefanik, Elise M. [R-NY]
Rep. Smith, Christopher H. [R-NJ]
Rep. Soto, Darren [D-FL]
Rep. Kilmer, Derek [D-WA]
Rep. Lowey, Nita M. [D-NY]
Rep. Lance, Leonard [R-NJ]
Rep. DesJarlais, Scott [R-TN]
Rep. Visclosky, Peter J. [D-IN]
Rep. Smith, Adam [D-WA]
Rep. Ros-Lehtinen, Ileana [R-FL]
Rep. Pingree, Chellie [D-ME]
Rep. LoBiondo, Frank A. [R-NJ]
Rep. Emmer, Tom [R-MN]

If your congressional representative is not listed above, there are two ways you can help: CALL or MEET with your member of Congress.

CALL YOUR REPRESENTATIVE: Calling is far more effective than emailing in this scenario. After your initial call, follow up as often as you can until you know your representative has signed on to the bill. Click here to look up your representative's contact information. Please use the talking points we list below during your call.

MEET WITH YOUR REPRESENTATIVE: Meeting with your representative in person is most effective. It is not necessary to travel to D.C. to do so, as you can request to meet with your member of Congress at their local office. If you would like guidance or assistance in setting up a meeting or preparing for your meeting, please contact Melinda Kotzian at mkotzian@curemeso.org or 703-879-3825.

TALKING POINTS: Currently, there is no formal registry to keep track of mesothelioma patients, their demographics, and other important information that researchers need to develop more effective treatments. Please ask your member of Congress to sign on to the 'Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2017' (also known as HR 1563), a bi-partisan bill to support The Centers for Disease Control and Prevention (CDC) in establishing the National Mesothelioma Patient Registry.

The patient registry would be used to collect the scientific data needed to establish causality, evaluate existing medical services and identify the resource needs for mesothelioma patients. Information gleaned from the registry would be used to:

• Establish priorities for successful outcomes
• Develop and revise standards of care and treatment best practices
• Share evidence-based information between physicians across the country
• Implement benchmarks to improve care in mesothelioma clinics
• Identify centers that provide the most beneficial care to patients

To co-sponsor the bill, they should contact Congressman Katko's office at 202-225-3701.

If your member of Congress declines your request to co-sponsor the bill due to the cost to establish a patient registry through the CDC, remind them that the CDC recently reported a rise in mesothelioma deaths. If they are concerned about the rarity of mesothelioma, note that advances in mesothelioma research have an effect on the standard of care in other cancers, notably lung cancer, which kills over 150,000 Americans each year.

If you have any questions or need assistance as you reach out to your members of Congress, please contact Melinda Kotzian at mkotzian@curemeso.org or 703-879-3825.

Mesothelioma Research Advocacy and Government Affairs

Advocacy for mesothelioma research funding is central to our mission to eradicate mesothelioma and the suffering caused by it. The mesothelioma community comprised of patients, their loved ones, caregivers, doctors, researchers and nurses meets annually to share their stories with Congress and educate them on the devastation caused by mesothelioma.

The advocacy of the mesothelioma community, led by the Mesothelioma Applied Research Foundation, has driven Congress to find a way to fund research. For example, a new stream of funding for mesothelioma research through the Congressionally Directed Medical Research Programs (CDMRP) that has resulted in $12.4 million in mesothelioma research funding is a direct result of the hard work of mesothelioma advocates.

Learn more about mesothelioma and how you can get involved in our Ambassador Program.

Learn more about the partnerships we have developed to further our efforts.

Act Now!

Our Issues

Advocacy for mesothelioma research funding is central to our mission to eradicate the suffering caused by mesothelioma.

Our mesothelioma advocacy focuses primarily on increasing the federal investment in mesothelioma research, which leads to better treatments and a cure. We actively pursue federal funding for medical research on mesothelioma by educating Congress about mesothelioma, how it affects American families and what they can do to help. Our primary objectives are securing funding for the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research Programs (CDMRP).

Legislation We Follow

The Mesothelioma Applied Research Foundation is a trusted representative of the mesothelioma community to Congress, federal agencies and health advocacy groups, and is the only mesothelioma nonprofit in the DC area. Our directive is to represent the best interests of mesothelioma survivors, their loved ones, and the health professionals that treat them to increase funding for medical research and ensures the best outcomes for people with mesothelioma. Find out about issues that affect the mesothelioma community.

CDMRP

The Congressionally Directed Medical Research Programs (CDMRP) fund the best scientific and medical research aimed at eradicating diseases, including mesothelioma. For four years, fiscal years (FY) 2008, 2009, and 2010 crucial mesothelioma research was funded by the CDMRP’s Peer Reviewed Medical Research Program (PRMRP). In 2011, 2012, and 2013 mesothelioma was moved to the Peer Reviewed Cancer Research Program (PRCRP). Mesothelioma is currently included as a topic area in the House Defense Appropriations Bill for fiscal year 2014 in the PRCRP, funded at $15 million. LEARN MORE

NIH/NCI

Historically, there has been a great disparity in the amount of research funding that mesothelioma has received from the National Institutes of Health (NIH) and the National Cancer Institute (NCI). As recently as 2011, cervical cancer, which has a similar death rate to mesothelioma and now has a vaccine, was funded at $81 million, while mesothelioma received less than $10 million in funding. This is more than 8 times more than mesothelioma. LEARN MORE

How to Get Involved

Enroll in Our Ambassador Program

Look Up your Elected Officials