Head to the Hill: Brain Tumor Patient Advocacy

Together voices are stronger.  Together communities make change.  This past May during Brain Tumor Awareness Month I had the great privilege to participate in the National Brain Tumor Society’s Head to the Hill Event.  Head to the Hill is a powerful advocacy event held yearly in Washington, D.C.  During the two day event, 304 advocates from 39 states joined together to ensure the voice of the brain tumor community reached our elected officials on Capitol Hill.

Head to the Hill 2016
Me and Brian, a brain tumor survivor and veteran Head to the Hill attendee. Turns out we live in the same city.

Day one of the event was advocacy training. Participants were seated by their respective states.  Some states had two advocates total and others had three tables of advocates. Something amazing happened Day One as we sat and learned about the challenges the brain tumor community faces in appropriating funds for research, lack of access to care and unsuccessful clinical trials: you could feel the energy in the room building.

 There is something so powerful about being surrounded by people who seek to achieve a goal that serves no other purpose than to help others. The sense of urgency to create change was tangible.

We spent much of Day One learning about the policy changes we would be asking for.  The second half of the day was spent building strategies to execute our asks in front of our Senators and Congress people, listening to updates from the NCI and learning a bit about Capitol Hill from a staffer. The day concluded with time to recognize Ependymoma Awareness day and a late afternoon event with CERN, the Collaborative Ependymoma Research Network that included a butterfly release and patient testimonials.

There were three specific asks for Head to the Hill in 2016:

  1. Appropriations for Medical Research and Drug Development- This ask requested an increase in funding for NIH and NCI.  The significance of this ask is two fold. First, there are few therapeutic options for patients with a brain tumor. The overwhelming majority of therapeutic agents studied in clinical trial have not made it to market.  As such, brain tumors remain one of the most deadly forms of cancer today.  Second, private investment/research and philanthropy cannot replace the research efforts by agencies like NIH and NCI.  Furthermore, increased funding is needed for these agencies to speed up the time from discovery to approval because most treatments studied in clinical trial will fail. The impact that a breakthrough therapy would have on the community is tremendous.
  2. Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act- This ask serves to advance pediatric brain tumor research and child-focused cancer treatments.  Did you know that no standard of care exists today for children with a brain tumor?  This means that children are currently given adult protocols with the hopes they will work. Unfortunately, pediatric brain tumors are the most common form of tumor in children under age 19, and the number one cause of cancer related death in children under age 14. Using adult treatments on children may help them survive their disease, but more often than not, leaves children with devastating life-long complications. No one in the medical community and no patient or family member can really call that a success.  The goal of children specific research and treatment is to ensure that when treatment is successful and keeps a child alive, that child is able to live a good quality of life. An important piece of this legislation is its focus on improving access to and clarity around compassionate use policies.  Compassionate use is “the process by which a patient with a serious or life-threatening illness can be granted access to therapies still in development and outside of the clinical trial setting, when there is no comparable alternative.”  Currently it is very difficult for families to understand how to apply for and how to find opportunities for compassionate use.
  3. Oral Chemotherapy Parity- This ask would require that insurers cover oral chemotherapy on an equal basis as chemotherapy given intravenously or by injection.  Why is this important?  IV or injectable chemotherapy administered in a hospital setting is generally covered under a medical benefit, which means significantly lower cost to patients. The standard of care chemotherapy for many brain tumors, Temodar (Temozolomide) also happens to be the treatment keeping many patients alive today, and even as a generic can come with monstrous co-pays/co-insurance because it is covered as a prescription and not the life-saving medical benefit. For a large proportion of patients, Temodar is the only pharmaceutical option with a proven survival benefit for treatment of their brain tumor. Patients at Head to the Hill told us stories of thousands of dollars a month in prescription costs for prescriptions that keep them alive.  Even paying thousands of dollars a month, there is no cure for a brain tumor, which is why the first ask is so important. Oral chemotherapy access is critical for patients.  It improves ease of treatment and quality of life.  It improves ease of treatment in that patients do not have to travel to receive therapy.  Some patients may have to travel hours to get to their physician. It improves quality of life because, as one patient put it, “who wants to be throwing up surrounded by strangers at their physician’s office? It’s embarrassing and demoralizing. If I’m going to be sick, I want to do it in the comfort of my own home.”

Day Two was spent on Capitol Hill meeting with respective Senators and Congresspeople. As a Maryland resident, I had three meetings. The day started with our entire state group meeting with the staff from Barbara Mikulski’s office. My local group later met with the Deputy Chief of Staff at John Sarbanes office and finally the entire group reunited to meet with representatives from Ben Cardin’s office. There is something so powerful about being surrounded by people who seek to achieve a goal that serves no other purpose than to help others. Patients and family members shared stories of what this advocacy event meant to them. The sense of urgency to create change was tangible. As a first time participant, I knew nobody going into this event, but left with a sense of community and shared purpose.






Here’s a great picture of Team Maryland after our first meeting with Senator Barbara Mikulski’s office:

Head to the Hill 2016
Maryland Advocates after meeting with Chris VanHollen’s office.

Head to the Hill was an amazing, humbling experience. For more information about Head to the Hill, please visit the National Brain Tumor Society. To see more pictures from the event, search the hashtag #head2hill and click “photos.”  For my previous post on Brain Tumor Awareness Month, with more facts about brain tumors and the struggles related to research, please head here.

If this is a cause that is important to you,  I would strongly encourage you to get involved either in-person next year or virtually all year long by supporting the message on social media and by writing/calling your elected officials.

Disclaimer: All writing on PUGTATO is my own personal view.  It may not necessarily represent views of my employer, nor should anything I’ve written be considered medical advice. 

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