On March 4, 2015, I had the honor of joining patients, caregivers, and mesothelioma advocates on Capitol Hill to meet with our respective state legislative representatives.
Our purpose? To ask members of the House and Senate to continue their support of funded mesothelioma research and to create a registry for all mesothelioma patients.
Why Mesothelioma Research?
Congress passed the Fiscal Year 2015 Defense Appropriations Bill which awarded $50 million to 11 different cancers for continued research. Luckily, mesothelioma was on that list. We thanked members of Congress for passing this important piece of legislation, and more importantly, for including mesothelioma among the list of cancers to which that money will be allocated. However, even with this new budget, it’s pennies compared to where we need to be.
Currently, there is only 1 approved drug on the market for mesothelioma patients. That’s it. More research will hopefully increase this number.
Why a Mesothelioma Patient Registry?
Each year, mesothelioma affects about 3,200 people nationwide. That number of new cases remains steady. Unfortunately, with the current treatment options available, the average lifespan for most patients is about 12 months.
Imagine if these patients were all connected to each other in 1 big online registry. Information about their tumors could be shared. Doctors with expertise in mesothelioma could study biopsies. If new treatment options became available or clinical trials were beginning, doctors could contact patients and set them up on trials based on their unique diagnoses. Perhaps, patients’ lives would be prolonged and the average life span increased.
The registry would offer an easy way for mesothelioma patients to connect with one another. A patient in Michigan may discover that someone in California has the same exact type of cancer. This could help to build their support network.
With these 2 connecting needs for research and for a registry, we, along with the Mesothelioma Applied Research Foundation (MARF), hope to make progress toward achieving this goal. A national registry through the Centers for Disease Control and Prevention (CDC) has already helped people with many other rare diseases increase their treatment options. Imagine what it can do for the mesothelioma community. Imagine the difference it can make.
I would be remiss if I didn’t thank the advocacy group with whom MARF works, Soapbox Consulting. They made the entire advocacy day incredibly easy, from setting up our meetings with local representatives, to keeping us on schedule, to giving us a much-needed map of Capitol Hill. Without them, I would have been lost, so thank you.
Also, thank you to the staff with whom I had the honor and privilege of speaking about this important topic. Being from the “Brain State,” as Senator Edward Markey’s staff called Massachusetts, made the conversations with his office, as well as the offices of Representative Joseph Kennedy and Senator Elizabeth Warren, quiet fulfilling. I left feeling confident they will continue working hard for mesothelioma patients and their families. For their truly engaged listening and empathic understanding of this important cause, I thank them.
If you wish to support the continuing research and MARF’s request for a national mesothelioma patients’ registry, I encourage you to write to your state representative and senator. You can find them below:
I also encourage you to connect with MARF and learn about all the good work they do. They have regular updates to share with the community. Visit their website at: curemeso.org.