WASHINGTON, D.C. — The hallowed halls of Congress always are bustling this time of year, particularly with members in session. Those halls were even busier than usual Wednesday, covered with more than 20 groups of mesothelioma advocates who spent the day lobbying politicians to fund a steady revenue source for critically-needed research.
The advocates — patients, family members, just friends of the cause — are gathered this week for the ninth annual Mesothelioma Foundation Symposium.
Before it officially starts, though, there was the all-important business of finding resources to help find a cure. The effort was organized by the Mesothelioma Applied Research Foundation (MARF), which was hosting the symposium.
“I think this is the most important thing we can do,” said John Anderson, who was accompanying wife Bonnie Anderson, a mesothelioma survivor, on her numerous Congressional office visits Wednesday. “Without the resources, nothing will get done.”
Bonnie Anderson, who was diagnosed with peritoneal mesothelioma in 2002, will receive the Bruce Vento Hope Builder Award this week for her advocacy efforts. She was instrumental in the efforts to have Sept. 26 declared National Mesothelioma Awareness Day by Congress and the MODDERN (Modernize Our Drug and Diagnostics Evaluation and Regulatory Network) bill that was proposed earlier.
She, John and a MARF representative met with Rep. Leonard Lance (R-New Jersey). The Andersons also met with representatives for five other New Jersey congressmen to make a similar pitch. Some of the meetings were prearranged.
Some were spur-of-the-moment, cold calls that worked.
“This is what we do,” Bonnie said. “Most people don’t realize the effect you can have on politicians. You have to ask. They don’t always agree with you, but they will listen.”
The Anderson’s regularly talk with legislators in their home offices, but at least once each year do it in Washington.
Trip to Capitol Hill About Research Funding
The gist of Wednesday’s lobbying efforts by MARF was a request for a $5 million dedicated funding stream from the Department of Defense, based on the disproportionate amount of military veterans who are being diagnosed with mesothelioma.
An estimated 3,000 Americans annually are diagnosed with the deadly cancer, and approximately one-third of those are veterans, usually stemming from the inordinate amount of asbestos used by the military in the 20th century. Asbestos is the only confirmed cause of mesothelioma.
Federal funding for mesothelioma has dropped in recent years. In 2011, it competed with numerous other diseases for a share of a $16 million allotment. In 2012, it competed for a pot of $12 million.
The lack of research money available is a major reason why the progress in fighting the cancer has been so slow. There is only one approved treatment regime that extends average survival by just three months, according to MARF.
Although the latency period between exposure to asbestos and obvious mesothelioma symptoms is long (10 to 50 years), the life expectancy after diagnosis is short (six to 18 months).
“I’m here because I care,” said Barbara Walter, whose father Martin Walter died of mesothelioma 15 years ago. “Research funding is so important.”
Shirt: Cure Mesothelioma
Walter spent the day visiting congressional representatives from her home state of New York, including Sen. Charles Schumer (D-New York).
Another small group of advocates from Florida met with aides for Sen. Marco Rubio (R-Florida) and Sen. Bill Nelson (D-Florida).
“I get it,” said Sally Canfield, deputy chief of staff for policy in Rubio’s office, after listening to a brief lobbying effort. Canfield has visited Libby, Montana, the small town devastated by the effects of asbestos mining, which led to thousands of mesothelioma cases. “I understand.”
While husband John was wearing a t-shirt with the United States Constitution on the front, Bonnie was wearing a “Cure Meso,” shirt which caught the attention of a former New York fireman who was in town on other business.He explained to her his recent diagnosis of mesothelioma. He was a first responder at the World Trade Center 9/11 terrorist attack, where an estimated 400 tons of asbestos fibers were in the air.
“This problem isn’t going away anytime soon,” Bonnie said. “We have to keep working, keep educating people.”