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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! Every year, Congress provides funding to U.S. Departments and agencies through 12 different appropriations bills. As part of this annual funding process, U.S. Senators and Representatives have the opportunity to write the Chairmen and Ranking Members of the various appropriations subcommittees, expressing their priorities for funding for the coming fiscal year. We have made available two letters (one of your House of Representatives member, and one for your Senators) for you to send to your elected officials asking them to support funding to establish a national mesothelioma patient registry. Click here to send the letters now.

The creation of a registry for mesothelioma is crucial for the advancement of the mesothelioma science and development of effective treatments for this cancer. Other conditions, diseases, and cancers have seen incredible progress and increased life expectancy of their patients as a result of registry implementations. Patient registries have played a crucial role especially for diseases that are considered rare and for which scientists have a difficult time accessing enough data to conduct their research (or, for example, for which it is difficult to find enough patients to enroll in clinical trials in order to complete them). Researchers around the world need disease registries to bring together information about relatively rare diseases, such as mesothelioma.

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 $15.1 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