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.

Symposium Videos, Photos Now Available!

2014 Symposium Photos

In early March, the Meso Foundation held its 11th International Symposium on Malignant Mesothelioma in Alexandria, Virginia. We welcomed attendees from all over the world, including patients, caregivers, doctors, researchers, and so many others. The event was a huge success.

WEDNESDAY
Wednesday morning began as attendees gathered for breakfast before heading off to Capitol Hill for Advocacy Day. This is the time when the entire meso community welcomes the opportunity to educate our law-makers about mesothelioma and the need for mesothelioma research funding. This video gives a brief overview of the day.

Wednesday night concluded with a Welcome Reception for all attendees. The reception began with a keynote speech from Dr. Dean Fennel and then moved on to a night of passed hors d’oeurve, drinks, and socializing with the community. This was the first of many chances for attendees to mingle with old friends and make new ones. Take a look at some photos from the event!

THURSDAY
Thursday morning began with a Celebration of Life ceremony, which culminated in a release of doves over the pond outside the hotel. The theme of the ceremony was hope, compassion, and community.

Dove release

Doves were released during the Celebration of Life at the Symposium

The Foundation’s executive director, Mary Hesdorffer, NP, kicked off the day of sessions with a welcome speech in which she introduced the Meso Foundation’s staff, Board of Directors, and Science Advisory Board. We then heard from two keynote speakers: Dr. Ira Pastan, Head of the Molecular Biology Section of the National Cancer Institute, followed by Dr. Raffit Hassan.

Meso community

Every year, the community loves to get together at the Symposium. They find time to socialize even with a tight agenda!

Thursday continued with informative scientific and community sessions, started by Dr. Faris Farassati who discussed cancer stem cells. Mary was then joined by Dr. Marc DePerrot, Dr. Dan Miller, and Dr. James Pingpank to discuss post-surgical recovery. Dr. Tobias Peikert and Dr. Dan Sterman covered the topic of pulmonary health. In nonmedical sessions, Olga Pavlick led a newly bereaved discussion group, while Jessica Barker was joined by Rich Mosca and Hanne Mintz to discuss the importance of getting a proclamation in your area to officially declare September 26th as Mesothelioma Awareness Day. Miriam Ratner, Rev. Eric Linthicum, and Dana Purcell held a panel discussing the healing arts. Other topics of the day included exercise and nutrition, novel therapeutics, radiation oncology, chemotherapy, and early detection.

Thursday night concluded with an Awards Dinner. The dinner was MCed by Dr. Joseph Friedberg and Dr. Dan Sterman of the University of Pennsylvania, who did a great job keeping the atmosphere light-hearted and fun. We hope they never quit their day jobs, but surely they could also make a career in comedy!

Congresswoman Pingree

Congresswoman Pingree (center) with her constituent Lisa Gonneville (right) and Mary Hesdorffer, NP (left)

We were honored to have Congresswoman Chellie Pingree in attendance to accept the Bruce Vento Hope Builder Award, and she gave a powerful speech about her dedication to our cause and the need for mesothelioma research funding.

AWARDS
Rev. Eric Linthicum was presented the Compassion Award for his caring nature and dedication to the Foundation’s community. Dr. Michele Carbone received the Pioneer Award for his advancements in mesothelioma research. The Klaus Brauch Volunteer of the Year Award was presented to Olga Pavlick and Sarah Pavlick for their incredible efforts in organizing fundraising events and volunteering with the Meso Foundation. Anne Alessandrini received the June Breit and Jocelyn Farrar Outstanding Nurse Award for her passionate work in the Thoracic ICU at Brigham and Women’s Hospital. Jocelyn Farrar’s daughter presented the award to Anne. We also had a surprise award, the Philanthropy Award, which we presented to Don Bendix for his financial dedication to the Meso Foundation and mesothelioma research funding.

FRIDAY
Friday morning, the community was up bright and early for another day of sessions. The day began with a translation of the Scientific Seminar from Dr. H. Richard Alexander. He was then joined by Dr. Lee Krug to discuss the current state of mesothelioma research. Friday was not all about science, however, as we also held sessions such as yoga, walking for health, and art therapy. Following a brief update on the state of the Meso Foundation, Melinda Kotzian moderated a panel about getting involved and how you can help the Foundation. We heard from Maja Belamaric, Dana Purcell, Bonnie Anderson, Erica Ruble, Marina Mintz, and Rich Mosca on the many, many ways to get involved – from simply telling your story to events and advocacy. Other sessions of the day included a legislative update with Jessica Barker, a session with the American Legion, a talk on the empowered patient from Mary Hesdorffer, a session on chemo brain, a session on how to host a fundraising event as well as a fundraising panel, and more.

Meso Fighters Band

The Meso Fighters Band took the stage at the Community Dinner

Friday night served as a celebration wrapping up another successful Symposium. The Community Dinner was more like a community party than anything else. After an excellent buffet, attendees were surprised with a choreographed dance from Melinda Kotzian and Mary Hesdorffer (don’t worry – we have a video!). Following suit, much of the community took to the dance floor as the Meso Fighters Band took the stage. The Meso Fighters Band, which is made up of patients, doctors, and bereaved, played multiple sets featuring a playlist that mixed rock and pop. We heard everything from Janis Joplin to Katy Perry, and it was all fantastic. We ended the Meso Foundation’s 11th International Symposium on Malignant Mesothelioma with a celebration of our incredible community.

TAKE A LOOK
We have released videos of many sessions and speeches from the event. Watch the videos on our YouTube channel.

You can also check out some photos from the Symposium!

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.

Result of Change

As you’ve read in Mary’s most recent blog, I’ve just returned from a trip to Washington, DC.  The trip was for a few purposes and one she mentioned was to visit the site for this year’s Symposium.  The hotel and location are beautiful and accessible to many activities.  The Omni will provide a well needed respite for you all to bring your family, relax, and gather with others in the Community.  We are also hearing back from so many of you who have already booked your trip, which makes us even more excited as the Symposium draws near.

The main reason for my visit to the Nation’s Capitol was however to meet with many offices of the Senate and House of Representatives to get a firm grasp of what is going on with the asbestos ban and mesothelioma research bill.  Overall, the outcome was very positive.  Despite a tight schedule, many Senators and Members of Congress are still working diligently toward making the passing of this bill a reality this Session.  The new Administration, Congress and new appointees have made regulatory agencies, like the EPA, more cooperative and will provide support for the much needed votes.  What was stressed to me was the importance of the Meso Community staying in contact with our legislators and keeping advocacy alive in our awareness activities. Many offices remembered meeting with so many of you and are carried along in this work from the stories we’ve shared.

The following are some tips to help create and continue the momentum needed to ban asbestos and fund meso research:

  • Call and write to your House Representative and Senators about the importance of passing an asbestos ban and research funding bill this Session.
  • Call and write to the lawmakers who preside on the Committees working on this legislation (Energy and Commerce in the House of Representatives and Environment and Public Works in the Senate) to encourage and thank them for remembering the importance of this bill.
  • Read news articles about asbestos and mesothelioma in your area and State and make sure to share that information with your lawmakers, asking what they propose to do about it.
  • Call your local newspaper and media outlets and ask them to share your story of mesothelioma and the toll asbestos exposure takes on so many victims.
  • Encourage your friends, family and community to do the above and spread the word.  Everyone can do these simple tasks.
  • Spread the word about the Symposium and Advocacy Day in your town and especially to at-risk groups by printing out this flyer and asking to post it at your oncology center, doctor’s office, Veterans clubs, Union halls, and local Cancer Societies such as the American Lung Association.

I am confident that we can raise our voices to educate, remind, and create action in our lawmakers’ offices and see the signing of the strictest possible ban and funding for mesothelioma research from this Administration!

Advocacy Preparation for the New Year

After the big election, Capitol Hill is still a bustle trying to fill in the seats in President-elect Obama’s upcoming administration.  The new Obama-Biden government as well as the 111th Congress have their plates full with the challenges of stabilizing a faltering economy.  Luckily for us they will attempt these tasks while considering the overall health and safety in a more comprehensive and favorable way than the outgoing administration.  This means we will ideally have an easier time convincing Congress to finally pass the ban on asbestos and provide funding for meso research.

After the votes have been counted, the democrats obtained 59% of the seats in the Senate as well as 59% in the House of Representatives.  These numbers will help since the majority of our support for this important and life saving legislation is from the democrat party.  It is important for us to continue our efforts on this legislation from the start of the new Congressional Session.  There are many of us dedicated to the Foundation’s advocacy efforts and we can make the passage of this legislation a reality.

Many of you may be wondering how we can go about doing this, how will we participate, and ask where exactly does this legislation stand?  In order to stay focused and up to date on the happenings on Capitol Hill we will form an advocacy coalition of individuals who can meet by calling into a monthly phone call meeting held by the Foundation.  We will provide info on what is happening and will encourage your feedback and ideas.  This will help us stay organized and provide a way for all of us to gather together to fight for our cause.

As the offices are filled with new and returning elected officials, we will create new and continue to enhance old relationships with these individuals and their staff members.  We will inform Congress of the need to support research funding to find better treatments and a cure for meso by calling, writing and visiting their offices and will encourage our family, neighbors, friends and community groups to join our efforts.

At the moment Congress is inundated with details surrounding the economic crisis and will recess for the remainder of this Congressional Session within days.  The Representatives who have been working hard on this legislation in the House will continue their work in the new session, keeping the same language they’ve worked so hard to come to consensus on.  Once Representative Gene Green schedules this bill for mark-up in the Committee on Energy and Commerce, the funding provisions can be added before it is moved to the Full House of Representatives for vote.  After it passes the House vote, the Senate will need to pass this language or submit their changes and vote on the bill.  If the same language of the bill passes in the Senate, it will go to the President for signing.  If the language is changed and passed in the Senate, both Houses of Congress will go to conference the bills together before submitting the legislation to the President.

As you can see, the nature of our legislative body creates possible changes in this legislation’s path to becoming law, which means our eyes and ears must remain open while we work together to see the passing of this bill become a reality.  Together we can see this through!

Please email me at jpiccolo@curemeso.org if you are interested in becoming a part of the advocacy coalition.  I will email all those interested about the details.  Otherwise, our advocacy actions will be displayed on the curemeso.org website Advocacy-Progress Report.

~Jeni Piccolo