It is estimated that 87,000 people will be diagnosed with a brain tumor this year, and 14.6% of those diagnoses will be a glioblastoma. From OurBrainBank “the GBM Bill of Rights was crafted from the results of a 2019 survey taken by 400+ GBM patients and caregivers. It includes the right to: personalized care, genetic testing, a second opinion, experimental trials and treatments, psychological support, money-blind treatment, fast-tracked MRI results, best end-of-life care, and more.”
When someone is diagnosed with a brain tumor, they can feel distant or alone from family, friends, and others as they fight this disease. Head for the Cure and Brains for the Cure hope to combat this feeling by being an outlet for support, providing a sense of community and hope, and a helping hand as a resource throughout the journey. As a way to support these missions, Head for the Cure, along with the larger brain tumor community, observe the month of May as Brain Tumor Awareness Month, however it is not officially designated as such across the country. Some cities and states have approved legislation that officially recognizes Brain Tumor Awareness Month, and others are beginning to follow suit.
Ohio State Representative Jeff Crossman has first-hand experience with this terrible disease. His grandfather was diagnosed with a glioblastoma in 1986. Then 30 years later, his mother Rose was also diagnosed with the exact same brain cancer. Rep. Crossman reflected, “In that 30-year span, we were astounded to learn that her prognosis was not much better in 2016 than if she was diagnosed in 1986.”
With an estimated 80,000 people newly diagnosed in 2019 alone, the average survival rate of 14-16 months for glioblastoma patients, and only 4 FDA approved drugs and 1 device for all 120 different types of brain tumors, Rep. Crossman turned his personal grief into action in honor of his mother, grandfather, and the thousands this affects every year. He knew the progress to find true comprehensive treatment could not be made possible if we didn’t have a true, dedicated awareness campaign surrounding brain tumors.
Rep. Crossman sponsored the House Bill 230 proposing May as Brain Cancer Awareness Month in the state of Ohio. After passing the Health Committee, Rep. Crossman contacted several advocacy groups and constituents to provide written testimony to encourage a vote on the floor. A hearing was held on November 5th with a few representatives speaking to their own experiences. One of those advocates was Head for the Cure Ambassador, Sam Mierzejewski.
“A brain cancer awareness month is important because there simply aren’t many brain cancer patients who survive long enough to advocate for themselves,” Mierzejewski testified.
On December 12th, Rep. Crossman shared his story with the Ohio House of Representatives as he spoke about the proposed H.B. No. 230. In addition, Representative Scott Lipps, and the Ohio House Health Committee supported the bill and urged the House to vote yes on this bill. Representative Kyle Koehler also spoke to the support of the bill, specifically in honor of one of his constituents who passed away on August 25th from brain cancer, eerily the same day Senators John McCain and Ted Kennedy passed away after their fight with a glioblastoma.
With 87 affirmative votes and no negative votes, the proposed bill passed the House and is moving on to the Senate.
“Head for the Cure was honored to help connect the Ohio brain tumor community to Rep. Crossman to partner in our same missions in building awareness for this terrible disease,” commented Jenna Heilman, Executive Director. “We need to continue efforts to pass this state by state to truly combat this disease.”
If you would like to join the fight in helping make May officially Brain Tumor Awareness Month across the country, please contact Head for the Cure.
A Note from Head for the Cure Executive Director
Head for the Cure was thrilled to endorse the resolution of officially making July 17th National Glioblastoma Awareness Day. The inaugural day sparked a breathtaking movement not only for those who support Head for the Cure, but those affected by a brain tumor across the country. Never before have the major brain tumor foundations and organizations come together for one joint cause. It was absolutely amazing to watch!
This day was championed by the National Brain Tumor Society because of their working relationships with Congress and other key political figures. The resolution was unanimously passed after gaining several sponsors in the Senate for this resolution including Lindsay Graham (SC), Elizabeth Warren (Mass) and Roy Blunt (MO), to name a few. The NBTS then included other brain tumor advocacy groups including Head for the Cure to join the movement.
Through social media and other messaging, we heard powerful stories of survival, inspiration from personal journeys and struggles and remembered those who have lost their battle with a glioblastoma.
Bringing the brain tumor community together is incredibly important because a brain tumor diagnosis can be an isolating feeling. These stories connected those who are fighting or who have supported someone throughout their diagnosis; moreover, it also brought the movement to people who had no real idea about what a brain tumor diagnosis means to a person’s life.
Nothing is more compelling than sharing raw and vivid stories that enhance the human spirit, celebrate life and inspire others to carry on in someone’s memory. This disease is bigger than one organization…bigger than one person. This disease is illusive, has taken too many lives, and
the best way for us to find a cure is by continuing to collaborate for the greater good. No one fights alone!
Jenna Heilman is the Executive Director at Head for the Cure Foundation (HFTC). HFTC raises awareness, funds and hope for the brain tumor community in support of brain tumor research and programs, like Brains for the Cure. If you’d like to learn more about how to get involved to share your story or advocate for brain tumor patients, email [email protected].
Advocating for brain tumor patients and caregivers is crucial in the work done at the Head for the Cure Foundation to defeat brain cancer! That’s why we are asking you to join Head for the Cure, and Ohio State Representative Jeff Crossman, to provide your opinions on an extremely important matter. Please take the time to read the notice below, regarding important information about helping make May officially Brain Cancer Awareness Month in the state of Ohio.
While brain cancer advocacy groups continue to recognize May as Brain Cancer Awareness Month, this is not a national or state acknowledged month of advocacy and awareness. Ohio State Representative Crossman has a personal reason to want to pass a bill officially designating May as Brain Cancer Awareness Month.
Rep. Crossman lost his mother, Rose Weikart, to a glioblastoma (GBM) in May 2018. Rose was known as someone who was always taking care of other people. Even as the effects of the GBM became more and more apparent, she continued to think of others above herself. Crossman also lost his grandfather to brain cancer as well.
Unfortunately, there are too many similar stories as brain tumors can affect anyone, anywhere and at any time. With more than 80,000 newly diagnosed in 2019 alone and the median life expectancy of a GBM still at 14-16 months, Crossman is leading this movement to help raise the awareness needed to help fight this disease!
We need volunteers to tell their own personal stories to Ohio legislators on why formally designating May as Brain Cancer Awareness Month is so important. We would need all testimonials by September 1st. In addition to the written testimonies, advocates are encouraged to testify in-person during one of the sessions in the early fall, once a date is established. We can help you craft your testimony letter. If you are interested in joining the fight, please email Head for the Cure Executive Director, Jenna Heilman at [email protected].
Your Voice Matters!
Advocating for brain tumor patients and caregivers is crucial to the mission of Brains for the Cure. That’s why we’re asking our readers, to provide your opinions on an extremely important matter. Please take the time to read the notice below, regarding important information about Medicare coverage for specific brain cancer therapy.
Optune is an FDA approved treatment for Glioblastoma which is also recommended as Level 1 – the highest level – by the NCCN guidelines as one of the standards of care for treatment of newly diagnosed glioblastoma.
Medicare’s position: Until now, Medicare has not covered the cost of the Optune device. With this ruling, they propose to now cover the cost…but with restrictions. The main restriction that could have a grave impact is not allowing coverage of Optune for patients who are not treated at an NCI designated cancer center. Not only does that eliminate coverage for thousands of patients, but it could set dangerous precedent for other insurance companies. Currently, 95% of private insurance companies insure the Optune device, but these regulations may open the door for companies to adjust their coverage plan to match Medicare’s.
There is an open comment period now through June 24th, as well as a public meeting on June 20th in Baltimore. You can provide your opinions either in person, via teleconference or by email.
Public Meeting – June 20th (9 a.m. – 12 p.m. EDT)
Westin Baltimore Washington International Airport
1110 Old Elkridge Landing Rd
Linthicum Heights, MD 210909
Submit Your Comments Via Email
Send email to [email protected] with subject line Comment on Proposed LCD TTFT (DL34823)