Mesothelioma Foundation Experts Can Answer Your Questions!

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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Contact Your Representative: Patient Registry Bill

We need your help! Since the introduction of the Mary Jo Lawyer-Spano Patient Registry Act, and thanks to your outreach, the following Congressional Representatives have signed on to the legislation:

John Katko (NY)
Jan Schakowsky (IL)

Chris Collins (NY)
Betty McCollum (MN)
Pete King (NY)
Joe Kennedy (MA)
Leonard Lance (NJ)
Mark Pocan (WI)
Nita Lowey (NY)
Pete Visclosky (IN)

If your Congressional Representative is not listed, please help us (even if you've already done it) by calling them, which is the best option, or emailing them. Also, feel free to do both.

  1. CALL YOUR REPRESENTATIVE: Please use the talking points we list below. You can search for your district and find your representative's phone number by visiting our Elected Officials Directory. If choosing this option, make sure to contact ONLY your member of the House (not Senate).

OR

  1. EMAIL YOUR REPRESENTATIVE: Click here to access our automated letter - make sure you scroll all the way down the page. Just enter your address, edit the letter (if you wish), and hit 'Send Now'. The system will automatically determine, based on your address, your congressional district, and will send your congressperson the letter.


TALKING POINTS:

  • Please ask your member of Congress to sign on to the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015 (also known as HR 3284). If they need the Dear Colleague letter written by Congressman Katko, they can download it here.
  • Currently, there is no formal federal registry to keep track of mesothelioma patients, their demographics, and other important information that could help identify gaps in current mesothelioma treatment. The profound impact of patient registries has been demonstrated in other diseases such as gastrointestinal stromal tumors, Gaucher’s disease, newborn screening for inborn errors of metabolism, interstitial pulmonary fibrosis, muscular dystrophy and many others; which, following their implementation, have seen an acceleration in treatment development and acceleration toward cures.
  • This bill is widely supported by mesothelioma experts and medical organizations and institutions. Read the list of supporters.
  • This is a bi-partisan bill currently co-sponsored by:

Jan Schakowsky (IL)
Chris Collins (NY)
Betty McCollum (MN)
Pete King (NY)
Joe Kennedy (MA)
Leonard Lance (NJ)
Mark Pocan (WI)
Nita Lowey (NY)
Pete Visclosky (IN)

BACKGROUND INFORMATION ABOUT THE BILL: 

In March of 2015, a Meso Foundation advocate, Meg Meccariello, met with her member of Congress, John Katko. Being a mesothelioma patient herself, having a sister with mesothelioma, and having lost her father and another sister, Mary Jo Lawyer Spano, to mesothelioma, Meg immediately caught Congressman Katko's attention. It so happened that the Congressman knew Mary Jo well, and even attended her funeral. As a result of this meeting, Meg worked with Congressman Katko's office to introduce the Mary Jo Lawyer-Spano Patient Registry Act of 2015, a bill meant to provide a national mesothelioma patient registry. We are very sad to report that Meg passed away in this November.

Read more about the Lawyer/Spano/Meccariello families in this article published in the Syracuse Post-Standard