ACTION ALERT: Mesothelioma Bill in Congress for Patient Registry

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!

House Passes ’21st Century Cures’ Bill Today

Capitol HillToday, a bi-partisan bill called the “21st Century Cures,” which would add $8.5 billion of funding to the NIH’s budget, passed by a 344-77 vote in the House.

The bill seeks to “accelerate the discovery, development and delivery of life saving and life improving therapies, and transforms the quest for faster cures by:

  1. Removing barriers to increased research collaboration;
  2. Incorporating the patient perspective into the drug development and regulatory review process.
  3. Measuring success and identifying diseases earlier through personalized medicine.
  4. Modernizing clinical trials.
  5. Removing regulatory uncertainty for the development of new medical apps
  6. Providing new incentives for the development of drugs for rare diseases.
  7. Helping the entire biomedical ecosystem coordinate more efficiently to find faster cures.
  8. Investing in 21st century science and next generation investigators.”

More information about the bill is available at

ACTION ALERT: Request Support for Increased Research Funding

action_alertDear supporter of mesothelioma research.

We need your help!

In March, Congresswoman Carolyn Maloney (D-NY) developed a formal letter requesting the U.S. House of Representatives Appropriations Committee Defense Subcommittee dedicate $40 million for the Peer-Reviewed Cancer Research Program (PRCRP) in the Fiscal Year 2015 Defense Appropriations bill. The $40 million represents a $15 million increase over the 2014 level for the PRCRP. Mesothelioma is one of the cancers eligible to compete for funding under this program.

Since then, the Senate Appropriations Committee passed a funding level of $50 million for the PRCRP, which would double the program’s 2014 level. Representative Maloney is now requesting that the House Appropriations Defense Subcommittee agree to the Senate level for the program in conference on the final version of the Fiscal 2015 Defense Appropriations bill. This is the bill that will go to the President to be signed into law.

If the Congress agrees to the $50 million for the PRCRP, it would represent a significant increase in funding for all applicable cancers, including Defense-funded mesothelioma research.

A “Dear Colleague” email went out last week, urging support. So far, the letter has been signed by Representatives Michael Fitzpatrick (R-PA), Eleanor Holmes Norton (D-DC), Charlie Rangel (D-NY), Sander Levin (D-MI), and Collin Peterson (D-MN). Additional support for this is critical!

Please take a moment to contact your House representative to request they sign on.

Look up your elected officials’ phone numbers.

Here is what you say:

Hi, my name is _________ and I am a constituent of Congressman/woman _________. I am calling to request for your boss to sign on to a Dear Colleague letter circulated by Congresswoman Maloney in support of $50 million in cancer research funding in the defense budget that has already been passed by the Senate committee.

Thank you!

Update on the Deadliest Cancers Caucus

The Meso Foundation encourages mesothelioma advocates to contact their Representative about the Congressional Caucus on the Deadliest Cancers.On May 8, a Dear Colleague letter was sent out by the founding co-chairs of the newly established Congressional Caucus on the Deadliest Cancers to invite other Representatives to join the Caucus. According to the Dear Colleague letter, the Caucus was created “Because almost half of all cancer deaths in the U.S. are attributable to one of the deadliest cancers, it’s imperative that we monitor implementation and what, if any, additional steps Congress should take to address these most lethal cancers.” The caucus was founded by Representatives Leonard Lance (R-NJ), Anna Eshoo (D-CA), Dave Reichert(R-WA), and Henry Waxman (D-CA).

We asked meso advocates to contact their Representatives to ask them to join this important Caucus. There are now 20 members, which is a direct result of the advocacy efforts of the Meso Foundation and the other members of the Deadliest Cancers Coalition. Thank you to all of the mesothelioma advocates that took the time to contact their Representatives!

The Coalition also planned a June 19 briefing about the bipartisan Caucus, which was attended by more than 100 Congressional staffers. Meso Foundation Director of Government Affairs Jessica Barker attended the standing room only briefing.

Below, you will find a list of the current Caucus members. Don’t see your Representative on the list? It’s not too late! Visit our Action Center now to ask your Rep to join this important effort!

Current Members
Rep. Matt Salmon (AZ-5) – June 18, 2014
Rep. Anna Eshoo (CA-18) – May 2, 2014
Rep. Zoe Lofgren (CA-19) – June 19, 2014
Rep. Adam Schiff (CA-28) – June 18, 2014
Rep. Henry Waxman (CA-33) – May 2, 2014
Rep. Alan Lowenthal (CA-47) – June 23, 2014
Rep. Joe Courtney (CT-2) – June 19, 2014
Rep. Tom Latham (IA-3) – June 19, 2014
Rep. Joe Kennedy (MA-4) – June 19, 2014
Rep. Ann Wagner (MO-2) – June 19, 2014
Rep. Carol Shea-Porter (NH-1) – June 19, 2014
Rep. Leonard Lance (NJ-07) – May 2, 2014
Rep. Rush Holt (NJ-12) – June 19, 2014
Rep. Carolyn Maloney (NY-12) – June 18, 2014
Rep. Steve Stivers (OH-15) – June 19, 2014
Rep. Allyson Schwartz (PA-13) – June 19, 2014
Rep. Joseph Pitts (PA-16) – June 18, 2014
Sen. Sheldon Whitehouse (RI) – June 9, 2014
Rep. Michael Burgess (TX-26) – June 19, 2014
Rep. Dave Reichert (WA-08) – May 2, 2014

Learn more about the Meso Foundation’s advocacy efforts and how you can get involved at

The Meso Foundation Applauds the Newly Formed Deadliest Cancers Caucus

Deadliest Cancers Caucus forms in Congress.On May 8, a Dear Colleague letter was sent out by the founding co-chairs of the newly established Congressional Caucus on the Deadliest Cancers to invite other Representatives to join the Caucus. The caucus, founded by Representative Leonard Lance (R-NJ), Anna Eshoo (D-CA), Dave Reichert (R-WA), and Henry Waxman (D-CA), described its purpose by stating that “because almost half of all cancer deaths in the U.S. are attributable to one of the deadliest cancers, it’s imperative that we monitor implementation and what, if any, additional steps Congress should take to address these most lethal cancers.”

The Meso Foundation applauds the formation of the Caucus. “We are so pleased to see the formation of the Deadliest Cancers Caucus in the House,” said Mary Hesdorffer, expert nurse practitioner and the executive director of the Meso Foundation. “Congress has recognized the need to do more for the most lethal cancers, and we are anxious to see progress. We will continue to dialogue with the Caucus and support them in any way we can.”

We would like to encourage you to request that your respective Congressional Representatives sign on to the letter. The request can be made by filling out a form at