Time is of the essence, persistence is key, and share your story. These were just some of the key points highlighted during our recent Meet the Mesothelioma Experts podcast during which we discussed advocacy and got an inside look into Capitol Hill. You can listen to the full episode below.
Our experts for the evening were Bill Franco and Julie Pawelczyk. Bill has 30 years’ experience working with the federal government, national trade associations, and corporate government affairs programs in both state and federal relations. Julie has more than 20 years’ experience serving as a legislative advocate working on behalf of multiple non-profit and corporate clients.
Bill elaborated that the Mesothelioma Patient Registry bill came to fruition after Congressman Katko learned that one of his constituents in Syracuse had the disease. The constituent and two of his daughters all died of mesothelioma, while another daughter had recently received a mesothelioma diagnosis. Congressman Katko was profoundly touched by this family’s tragic losses. Learning that mesothelioma research lags behind other cancers, he wanted to do something to help. This is how H.R. 1563 (also known as the Mary Jo Lawyer-Spano Patient Registry Act) came to be.
At the time of our live broadcast, the bill had 55 co-sponsors, but already as of today (March 13, 2018) that number has grown to 61 thanks to influx of letters of support from Meso Foundation’s constituents, support from other organizations, and medical professionals.
“Members of congress are the ones who direct dollars and they listen to where the most noise is,” explained Ms. Pawelczyk.
What kind of response do you get from legislators on the Hill regarding the bill?
According to Mr. Franco, it’s about education. Once they understand the ramifications and seriousness of the disease, their reception becomes solid. Julie added that some members know the importance of placing tax payer dollars towards research while some are more conservative. For the latter, explaining to them the benefits and showing them the bigger picture usually helps facilitate the conversation. Also, highlighting that organizations such as CDC have the resources to yield results help to pique interest and solidify support.
As a community, what can we continue to do?
Continue to share your story and tell your friends and family to do the same, so we can optimize the volume of support.
Write a letter to your members of congress, so the volume of letters continues to increase. The more noise they hear, the more they’ll be willing to rally behind our cause. Attending town halls, functions, and connecting with your representatives via social media are other ways to make our voice heard.
The time is now to submit letters and share your story. We encourage our community to do so by the end of March before members of congress begin to discuss the 2019 fiscal year budget.