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!

Wear Your Support: The New Meso Foundation Store

Store Products SampleWe are beyond excited to introduce to you the new Meso Foundation Store run by GoodThreads. Our new store features a variety of products and designs, many of which are customizable. The best part: whenever a product is purchased, the Meso Foundation receives a $5.00 donation.

Many of our available designs allow users to customize them by inserting a name or a photo of the individual they wish to honor or memorialize. Similarly, our event organizers can customize their products with their event’s theme and name.

When you land on the store home page, simply click the “Get Started” button to begin the process. Now, you can choose from 11 different designs. A range of design options are available, including basic “curemeso.org” logos, customizable event-specific “5k for Meso” and “Music for Meso” logos, simple designs that display your dedication to finding a cure for mesothelioma, and more.

Once you choose a design you like, you will be able to choose the product you want to purchase. Products are available for both men and women, including standard t-shirts, long sleeve t-shirts, pullover and zip-up hoodies, micro performance t-shirts, v-neck t-shirts, polo shirts, and more.

Products are available in a variety of colors as well, many of them in blue. There are a number of great options for you to wear on September 26 for Mesothelioma Awareness Day as we paint the world in meso awareness by wearing blue! Click here for more information about how to get involved on Meso Awareness Day.

After you choose your product and the color you prefer, you can either customize the design (if you chose a design that allows for this) or continue on to make your purchase. Once you enter the checkout process, you will see that a donation amount of $5.00 is included in the purchase price. You will have the option to make a higher donation if desired.

With our new store, we hope to raise more mesothelioma awareness and funds. The donations made via product purchases will go towards our mesothelioma research grant program, education and prevention programs, patient and family support programs, and our advocacy efforts. For a more detailed rundown of how donations are used at the Meso Foundation, click here.

Visit the Meso Foundation Store now to get started!

NIH to Start Enrollment for Precision Medicine Research

Patient ResearchIn his most recent State of the Union address, President Obama announced a bold new research effort to revolutionize how we improve health and treat disease. According the White House website, the Precision Medicine Initiative, as it’s called, will pioneer a new model of patient-powered research that promises to accelerate biomedical discoveries and provide clinicians with new tools, knowledge, and therapies to select which treatments will work best for which patients.

Last week, we learned that the one million patient research cohort at the National Institutes of Health (NIH) could begin enrolling patients in the next fiscal year.

As noted by the NIH, “Precision medicine is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. Many efforts are underway to help make precision medicine the norm rather than the exception.”

The NIH is currently finalizing a plan for the cohort that will be reviewed by their research advisers and then must receive a sign-off from NIH Director Francis Collins.

Kathy Hudson, NIH’s director for science, outreach, and policy, believes the funding for the cohort will be approved by Congress, noting that Senate and House appropriators will invest $200 million for the Precision Medicine Initiative.

In addition to necessary funding, the cohort initiative will require policy updates, including those for protection of human research participants. Also, patient access to fully interoperable electronic health records will need to be improved.

As the original Politico article notes, “Hudson said NIH is working with the Senate to include any necessary policy updates for the initiative into its biomedical reform legislation. The chamber’s work is expected to ultimately synch with the House’s recently passed 21st Century Cures bill.”

For more information on precision medicine and the Precision Medicine Initiative, visit nih.gov/precisionmedicine.

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 http://energycommerce.house.gov/cures.

New Prevention Education Brochures Available

Prevention BrochureThe Meso Foundation would like to announce the arrival of our new prevention education brochure, Preventing Mesothelioma: How to Minimize and Avoid Exposures to Asbestos.

The new brochure provides information about preventing asbestos exposure and answers questions such as the following:

  • What is the role of prevention?
  • Why is asbestos dangerous?
  • Why is asbestos still an issue today?
  • Where is asbestos present in the home?
  • Am I at risk of asbestos exposure?
  • What is secondary exposure?
  • Who makes up the high risk population?

The brochure is part of our larger asbestos and prevention program. Within the program, we also offer informational classes for at-risk groups. These meetings, similar in structure to town hall meetings, educate those concerned about public exposure via abatement processes, construction projects, naturally occurring asbestos, and other areas.

To request brochures or to schedule an informational class, contact Diane Blackburn-Zambetti at (877)-363-6376 x3827 or at dblackburn@curemeso.org.

Learn more about the Meso Foundation’s asbestos and prevention program at curemeso.org/asbestos.