ACTION ALERT: Mesothelioma Bill in Congress for Patient Registry

Advocates on Capitol HillMesothelioma advocates took to Capitol Hill to meet with Representatives in March on Advocacy Day at the Meso Foundation's International Symposium on Malignant Mesothelioma.

Advocates on Capitol Hill

We have big news and need your help! Today, the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015’ was introduced in Congress by Congressional Representatives John Katko (R-NY), Jan Schakowsky (D-IL), Chris Collins (R-NY), Peter King (R-NY), Betty McCollum (D-MN), Joe Kennedy (D-MA), and Leonard Lance (R-NJ). This bipartisan bill would establish the nation’s first formal federal registry to track mesothelioma patients. This would provide scientists with adequate clinical data to assist in their research.

This bill came about as a result of our March 2015 Symposium’s Advocacy Day when Meg Meccariello and her mother Elizabeth Lawyer met with Congressman Katko. The Lawyer family has been greatly impacted by mesothelioma. Meg, who is a mesothelioma patient herself, has lost her father Charles Lawyer and her sister Mary Jo Spano (after whom this bill is named) to mesothelioma. Another one of her siblings has also been recently diagnosed.

“Unlike many chronic and rare diseases, there is currently no national registry available for mesothelioma patients,” said Rep. John Katko. “These registries collect and consolidate information about individuals who suffer from the disease and provide health care professionals, researchers, and patients with the ability to search information about diagnosis, as well as track disease trends, risk-factors, and treatment availability.”

While the introduction of this bill is an important accomplishment for the mesothelioma community, our work is not yet done – we need your help! In order to ensure passage of the bill through the House of Representatives, it is critical for other Representatives to announce their support for the legislation as well.

Please use our Action Center to email your congressional representative and urge him/her to co-sponsor the ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015’. If you prefer to call your representative, you can use our website to find their contact information.

Below are some brief talking points that you can use:

  • Mesothelioma is a deadly form of cancer linked to exposure to asbestos for which there is no cure.
  • The five year survival rates are less than 10%.
  • Currently, there is no formal federal registry to keep track of mesothelioma patients.
  • The ‘Mary Jo Lawyer-Spano Mesothelioma Patient Registry Act of 2015’ would establish the first ever federal mesothelioma registry, providing clinical trial information, clinic information, and reports to help researchers identify and develop a cure to this deadly disease.
  • I urge you to co-sponsor this important legislation. Linked here is a ‘Dear Colleague’ letter circulated on Capitol Hill to garner further Congressional support that includes more information about the bill. Again, thank you very much for your support. Please do not hesitate to contact me with any questions you may have.

Click here to take action now!

5 Comments on "ACTION ALERT: Mesothelioma Bill in Congress for Patient Registry"

  1. John & Rosemary Schaffer | July 29, 2015 at 7:11 pm | Reply

    I am excited that Minnesota has gotten involved in this bill

  2. Marlyn S. Landin | July 30, 2015 at 12:18 pm | Reply

    I am a mesothelioma patient, so I know what asbestos does to people’s life’s . please sign the Bill.

  3. Joannie Butler | July 30, 2015 at 6:03 pm | Reply

    I found out that I had Mesothelioma as of March 2014 and still dealing with it. Have my ups and downs but hanging in there

  4. Sandra Hilligoss | August 3, 2015 at 12:31 am | Reply

    Please sign this Bill. I lost ,y husband to this deadly disease. It not affects the patient but their family as well. Unless you have had a member of your family with ugly disease you can’t possibly understand. It is debasing.

  5. I am a newly diagnosed Pleural Mesothelioma patient. This disease hits us like we were broad-sided in a car accident. Being otherwise healthy, this was the last thing that I thought would happen, through no fault of our own, many of us never worked with or around Asbestos. We got it from one of our parents who was exposed…and we got it just from loving them and hugging them.

    Please – sign the bill. It will help all future infected victims of this horrible disease.

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