Congress Exhibits Bi-partisan Support for NIH Funding in both House and Senate

Advocates on Capitol HillAs Congress works to map their federal spending for Fiscal Year 2015, advocacy organizations and members of Congress alike have been announcing their funding priorities for next year. The Meso Foundation has joined One Voice Against Cancer (OVAC) in asking for $32 billion in National Institutes of Health (NIH) funding, asking that Congress “end the erosion of cancer research funding.”

We are pleased to see that 186 members of the House, including 23 Republicans, support our funding request in a letter to the chairs and ranking members of both the full House Appropriations Committee and its Labor-HHS subcommittee. The letter, organized by Reps. David McKinley (R-W.Va.), Susan Davis (D-Calif.), Andre Carson (D-Ind.), and Peter King (R-N.Y.), requests that NIH receive “at least $32 billion” in FY 2015, stating:

We feel this amount is the minimum level of funding needed to reflect the rising costs associated with biomedical research. Full funding for NIH is critical if the agency is to continue to serve as the world’s preeminent medical research institution and our best hope for finding cures, improving treatments, and gaining a better understanding of the complex causes of diseases that affect millions of Americans….

The majority of the Senate (57 Senators, including 11 Republicans) signed a similar letter on April 3rd requesting the chairs and ranking members of the Senate Appropriations Committee and Labor-HHS subcommittee “maintain a strong commitment” to funding for NIH. While the letter organized by Bob Casey (D-PA) and Richard Burr (R-NC) does not mention a specific funding level for NIH, it urges appropriators “to consider the tremendous benefits of a sustained investment in the NIH.”

The Meso Foundation thanks these members of Congress for their public support of NIH funding.

Bonnie Anderson: Building a Relationship with your Legislators

Bonnie Anderson is advocating for mesothelioma by building relationships with her legislators, including Congressman Leonard Lance.

Bonnie Anderson with Congressman Leonard Lance (R-NJ)

Building a relationship with your legislators is a very important part of being an advocate, and mesothelioma warrior Bonnie Anderson is a wonderful example to us all. Bonnie has been one of the greatest advocates for mesothelioma research. She was the first mesothelioma warrior ever to be awarded the Bruce Vento Hope Builder award in 2012. Bonnie has established a close relationship with her Congressman, Leonard Lance (R-NJ), over many years.  She attends our Annual Advocacy Day each year when she visits his Washington, D.C. office to educate him about mesothelioma and the need for funding to progress mesothelioma research. She is active in our Meso Ambassador Program as well, where she regularly communicates with his office by sending emails directly through our action center or calling and speaking to staffers. Bonnie says, “it takes perseverance in speaking to our representatives, and becoming familiar with their aides (who have the keys to the kingdom). I tell every aide about mesothelioma, from the front desk (with the question do you know what mesothelioma is?) to every aide that I am introduced to. The key is following up so that your name is recognized when you do call, write or visit them (and you know their names too).”

This sort of legwork is necessary for members of Congress to learn your name and your issues, so that when you come along with an “ask” they already know who you are and what your issue is. Bonnie continues, “My mentor, June Breit, told me to stay on their doorsteps and to be persistent until noticed. At the time, I really thought that there was no way I could do that. Having a Congressman, his health aide and a Chief of Staff explain the process of how our political system works at each step when I do approach him is so important.” Bonnie also recognizes the importance of following up and saying thank you. “I follow up with thank yous. The unfortunate side is the lower level aides change constantly, the positive side is most upper level aides are key advisors for their Congressmen.”

Just last month, the meso community had the great success of having Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) send a Dear Colleague letter asking all of the Members of the House of Representatives to join them in urging the National Cancer Institute (NCI) to create a scientific framework for mesothelioma. At a time when Congress is very divided by a party line, Bonnie helped us to cross our greatest hurdle of getting a Republican to sign on to our letter, as it was penned by two Democrats. Often, the most difficult task of an advocate is to garner bipartisan support, but once you have the support of one member of the opposing party, more of them are likely to join.

Thanks to Congressman Lance’s pioneering signature, three additional Republicans signed on to the letter, Don Young (R-AK), Glenn Thompson (R-PA) and Jason Chaffetz (R-UT), guaranteeing a strong show of bipartisan support for mesothelioma. Congressman Lance signed on to this letter in honor of his constituent Bonnie, whom he has come to know through her advocacy. He reached across the aisle as the first Republican signature on the McCollum/Pingree letter to the NCI, which is no small feat in this divided Congress. The meso community is very grateful to Bonnie for helping us to cross this hurdle.

When the final letter is sent to the National Cancer Institute, we will post the final list of signers.

If you want to follow in Bonnie’s footsteps, sign up for the Mesothelioma Ambassador Program to build your relationship with your Members of Congress.

To learn more about the McCollum Pingree Dear Colleague Letter, check out this blog post.

The Meso Foundation Congratulates Reps. McCollum and Pingree for their Efforts to Advance Mesothelioma Research

The Meso Foundation congratulates Congresswomen Betty McCollum and Chellie Pingree for sending a letter to all members of the U.S. House of Representatives requesting they sign on to urge the National Cancer Institute to further mesothelioma research.

Alexandria, VA (PRWEB) December 03, 2013

Capitol HillYesterday, U.S. Congresswomen Betty McCollum (D-MN) and Chellie Pingree (D-ME) sent a “Dear Colleague” letter to all members of the U.S. House of Representatives asking them to join them in urging the National Cancer Institute to create a scientific framework for mesothelioma. The Mesothelioma Applied Research Foundation (Meso Foundation) has long advocated for the National Cancer Institute to increase their focus on mesothelioma, and congratulates Representative McCollum and Representative Pingree for their efforts on behalf of the mesothelioma community, including patients and families, physicians, advocates, and researchers dedicated to eradicating the life-ending and vicious effects of mesothelioma.

“Congresswomen McCollum and Pingree are leading a very important effort for everyone affected by mesothelioma by encouraging the National Cancer Institute to create a scientific framework to progress mesothelioma research,” said Meso Foundation’s executive director and nurse practitioner, Mary Hesdorffer.

“This is an incredible way to help thousands of patients affected by mesothelioma, and also honor our distinguished former board member and Congresswoman McCollum’s predecessor, Bruce Vento.”

Bruce Vento, was a prominent member of Congress who, after nearly 24 years of service succumbed to mesothelioma only eight months after diagnosis.

Representative Pingree’s constituent, mesothelioma survivor Lisa Gonneville spoke at the Capitol Hill briefing on Mesothelioma Awareness Day (September 26). Mrs. Gonneville pleaded that the staffers do something to address this deadly cancer.

“I’ve endured all of the treatment options available for mesothelioma, which are very limited,” said Mrs. Gonneville, “my only hope at this point is clinical trials.”

The Recalcitrant Cancer Research Act of 2012 was signed into law by President Obama on January 2, 2013 as part of the National Defense Authorization Act (Public Law No. 112-239), giving the Director of the National Cancer Institute (NCI) the ability to identify recalcitrant cancers for which to establish scientific frameworks that will guide research efforts.

For each recalcitrant cancer, NCI is to convene a working group of both Federal and non-Federal individuals to provide expertise and assistance in developing the scientific framework. The frameworks are to be completed within 18 months of enactment, then submitted to Congress and made publicly available on the HHS website within 30 days. The bill requires the progress of each scientific framework be reported in the National Institutes of Health (NIH) Biennial Report, with an assessment of progress made in improving outcomes for recalcitrant cancers. The bill further states that the NCI Director “shall consider” each relevant scientific framework when making recommendations for exception funding for grant applications.

The Mesothelioma Applied Research Foundation has independently funded over $8.2 million in peer-reviewed mesothelioma research to date.

Mesothelioma is a malignant tumor of the lining of the lung, abdomen, or heart known to be caused by exposure to asbestos. Medical experts consider it one of the most aggressive and deadly of all cancers. Approximately 3,000 Americans are diagnosed with mesothelioma every year and an estimated one-third were exposed while serving in the Navy or working in Navy shipyards .

ABOUT THE MESOTHELIOMA APPLIED RESEARCH FOUNDATION

The Meso Foundation is the leading organization dedicated to eradicating mesothelioma and easing the suffering caused by it, by funding peer-reviewed mesothelioma research, providing patient support services and education, and advocating Congress for increased federal funding for research. Mesothelioma funding, per death, has historically been extremely low, and even as recently as 2007, the NCI reported that mesothelioma receives as little as 9 times less funding than other cancers. The Meso Foundation was founded in 2000 to address this imbalance and since then has independently funded over $8.2 million in peer-reviewed mesothelioma research.

More information is available at http://www.curemeso.org.

FOR THE FOUNDATION: Ridin’ The Wind with Rob

Fundraisers come in as many varieties as there are interests. Fundraisers are also tributes to the people that inspire them; and for Jill Cagle, her special event this weekend is not just about raising awareness for mesothelioma research. It’s a celebration of a life well lived. This fundraising event is “Ridin’ the Wind with Rob,” happening this Saturday, July 28.

Jill’s husband, Rob Cagle, was an avid rider. Whether it was a Harley-Davidson motorcycle with its signature roar or something more serene like a ten-speed bike, Rob loved to feel the wind in his hair and the sun on his skin, prompting his favorite turn-of-phrase, “It’s All Good.” Jill wanted to celebrate that love of the open road alongside the memory of her husband and so she put together this family-friendly event happening this weekend in Pekin, Illinois. Whether you ride a Harley, a Yamaha or simply wish to ride your car, you are invited to take part in this, 91-mile long, ride (or drive) for meso awareness. “We have a variety of events planned for the day,” Jill promises. “We’ll be registering your vehicles between the hours of 11 a.m. and 1 p.m. and for the kids we will have games to play. If you’re not riding, we’re also raffling off donations from local vendors and holding a bake sale. We’ve got something for everyone.”

“Ridin’ the Wind with Bob” is more than just an open ride through the streets of Pekin. Starting at 4 p.m. at Goodfellas will be a spaghetti dinner, a $6 charge for anyone 13 or older, $4 for kids between 4-12. “This event will be, I think, very much like Rob’s spirit,” says Jill. “This will be fun for all ages and people will bring out their favorite set of wheels and enjoy a day in the sun. This is how he would want to reach people — not with fear or anger, but with a positive, fun attitude, showing people the best way to stand up against mesothelioma cancer — by living.”

“Ridin’ the Wind with Rob” will happen this Saturday, starting at 11 a.m. (with a blessing of the bikes at 11:30 a.m.) and will last all day. The spaghetti dinner is at Goodfellas from 4 p.m. to 7 p.m. For more information on this event or to make a donation in Rob’s name, call Jill at 309-267-3155. For more on upcoming events in the meso community, visit our website at CureMeso.org.

In the Shadow of Advocacy: A Meso Morning on Capitol Hill

Wednesday July 11, was Advocacy Day for us here at the Meso Foundation. In a later blogpost, you’ll hear me refer to this Wednesday before our 2012 Symposium as Virtual Advocacy Day but for those of us meeting (some of us, for the first time) on the Hill, it was Advocacy Day. Period. While we put out the call to tweet and post on Facebook awareness on mesothelioma research, I was joining Meso Community member Robena Reid on a visit to Capitol Hill. Our appointment was with Senator Jim Webb of Virginia’s office. I had been asked by the Foundation to shadow her for the morning, write up a report for our blog, and take photographs.

Now here is the true confession: I have never advocated anything before in person. I have emailed my representatives, both on the State and Federal level, but never have I gone to the Hill to speak on the issues. Any issues. This morning I was far out of my comfort zone really not sure what to expect.

The good news is I had Robena Reed to follow. Robena is part of the Department of Transportation; but regarding mesothelioma, Robena lost her mother to the disease. She has now taken it upon herself to prepare for visits with her representatives and bring to their attention the facts and truths of this horrible disease.

We met with a representative of Senator Webb’s, not the senator himself; but Legislative Correspondent McKenzie Bennett (pictured with Robena here) was focused, attentive, and approachable. She asked questions, sincere and thought-provoking questions. This kept us both on our toes, and soon I found myself stepping into the conversation between Robena and McKenzie.  Having your talking points printed from the curemeso.org website prior to your meeting will ensure you have the facts that you need.  Should your staffer have questions, take advantage of this opportunity to follow up with them after the meeting.  Together, we spoke for the community, providing statistics not only specific to Virginia but specific to mesothelioma and meso patients from coast-to-coast. When McKenzie concluded our visit, I admit to feeling elated with the morning meeting. Robena and I had just concluded an audience with Senator Jim Webb, bringing mesothelioma, its community, and its interests before our representative.

Then it dawned on me that we had a group of fifty in total, all of us speaking on your behalf.

The morning on Capitol Hill was a real education, and the last place I ever planned to find myself. I found a new appreciation for being able to make a difference. It is quite humbling and, yes, inspiring that we have the ability and the means to make a difference like this. I left Capitol Hill at the end of the day a little wiser on the process in which laws are made and the government serves its people, and understanding what happens when voters talk to their representatives. It was also inspiring to watch Robena take action, to hear her speak for the meso community. I’m already thinking of next year and what I can do differently.

I also hope, next year, I am asked once again to shadow Robena. After working with her on the Hill, I know I still have more to learn.