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Head to the Hill 2015: Affecting change on behalf of the brain tumor community

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It was 88 degrees and sunny on Capitol Hill during National Brain Tumor Society’s annual Head to the Hill advocacy event. Over 247 advocates came from 38 states to be the voice of the hundreds of thousands of brain tumor patients and survivors in the United States.  Our goals were to get our members of Congress to support these issues:

  • Include pediatric brain tumors among the eligible topics in the Peer Review Cancer Research Program (a program within the Department of Defense’s Congressionally Directed Medical Research Programs) for FY 2016
  • To support bi-partisan oral chemotherapy parity legislation in both the House of Representatives and Senate, which would make insurance companies cover oral chemotherapy under the same classification as IV chemotherapy treatments
  • Support an increase in FY 2016 Appropriations for the National Institutes of Health (NIH) to $33 billion and the National Cancer Institute (NCI) to $5.4 billion

The day prior, advocates, guest speakers, and NBTS staff held an all-day training day. The training day was an aggressive breakdown of the issues and facts, how to communicate the needs of community, and using one’s own experiences as the ultimate advocacy tool.

Among the important guests we were privileged to have speak with our advocates, were:

joedunnJoe Dunn, Senior Policy Advisor to Senator Chris Murphy (D-CT), who gave a phenomenal breakdown of how staffers and members of Congress receive lobbyists and stressed the importance of using your personal story to connect emotionally and effectively with your issue.

 

 

11162050_10153223770887808_4452041520551286459_o Dr. Mark Gilbert, Chief of the Neuro-Oncology Branch at the National Cancer Institute, who explained how the NIH and NCI are the primary funders of brain tumor research, went over the science as it exists today, and answered questions from the crowd.

 

 

Along with the conversations regarding advocacy, Megan Mackey, MS, CRNP of the NCI and NIH let people know that the NIH Brain Tumor Clinic can help current brain tumor patients and asked us all to spread the word.


The advocates were then separated by their states to practice their meetings. The size of the groups ranged from as few as one to as many as twenty, but the goal was the same: to make sure we were heard.

After the evening reception, we all took the rest of the evening to memorize facts, practice our roles, and get to know our fellow advocates. Many of the staff approached were told that the training had effectively prepared people on how to speak to their representatives and senators, as well as share their experiences online. When the lobbying day came, we all jumped on our buses and headed to Capitol Hill.

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We received positive feedback from the offices of several representatives and senators who were blown away by the passion and indisputable knowledge that the advocates possessed. In general, our advocates heard that there was support for increasing the NIH and NCI funding, that they would review the oral chemo parity bills once they were re-introduced to the 114th Congress. Finally, many offices were intrigued that adding pediatric brain tumors back into the Department of Defense’s Peer Review Cancer Research Program, as not only does it add no additional cost, but they’d been unaware that it was ever included, nevermind disappeared.

We applaud the efforts, too, of those who called into the offices of your members of Congress to plead the case for these three initiatives. Your work really brought home that we have thousands living with this disease, and countless more connected.

But we’re just getting started: we all need to continue to pressure the offices that met with us once the parity bills are introduced. It’s Your Fight, It’s Our Fight.

Before closing, we wanted to share with you that your engagement and sharing of your experiences on social media was nothing short of amazing. Thank you for making #head2hill a trending hashtag, and for all of your messages, photos and videos. We’ve created a Storify of many of these messages below:

We were very proud to stand with you in DC, for Brain Tumor Awareness Month, and in the future. Together, we are stronger than this disease.

  • http://www.NaturalMedicineMom.com Jenni@NaturalMedicineMom.com

    I hope you will be pushing for research on cannabis, as conventional treatments were not enough to save my daughter’s life from Glioblastoma. But there is mountains of anecdotal evidence to justify research on the subject of tumors. Let’s think out of the box, please, and not just support pharmaceutical monopolies. It’s our responsibility to encourage the government to study the things that are working, even if there aren’t billions to be made by it. There could be millions saved by it, and that should be reason enough.

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