Cancer Moonshot and the Brain Tumor Community

688,096 Americans are living with a brain tumor at this very moment. I am one of them. An estimated 77,670 more people will receive primary brain tumor diagnosed in 2016. Will you be one of the newly diagnosed? Perhaps you already are. Regardless, the future of brain tumor research is here and now.

The National Cancer Moonshot Initiative has been up and running since this past February. It comes as a part of a nearly $1 billion proposed budget initiative from the White House to the National Institutes of Health (NIH), with a $195 million approved investment. Vice President Joe Biden is spearheading the Moonshot Initiative, which came as no surprise after his son former Delaware Attorney General Joseph R. (“Beau”) Biden III died from brain cancer in the spring of 2015. Since the launch of the Moonshot, Vice President Biden has done his part to engage with all health care community stakeholders – patients, advocates, and providers, those in industry leadership positions, technologists, and researchers alike.

Part of keeping the Moonshot on course means including a team advisors. With The Chief Executive Officer of the National Brain Tumor Society, David F. Arons, JD, serving as a member of the Blue Ribbon Panel , the brain tumor community most definitely has a seat at the table. This panel in itself helps to advise and propose scientific goals for the Moonshot Initiative. Other members of the Blue Ribbon Panel include those working out of various top tier cancer centers, medical and nursing schools, and other research groups.

Film MRI ( Magnetic resonance imaging ) of brain ( stroke , brain tumor , cerebral infarction , intracerebral hemorrhage ) ( Medical , Health care , Science Background ) ( Cross section of brain )

I’d like to note that a member of the panel happens to be my very own neurosurgeon, Dr. Mitchel Berger. He saved my life, and his research might save yours or a loved one’s too. As a whole, the panel will provide expert advice on the vision, proposed scientific goals, and implementation of the Moonshot. The panel will also consider how to best advance the themes proposed for the Moonshot.

But, what does the Moonshot Initiative mean for the brain tumor community? We have 120 different types of brain tumors, many with different subtypes, and despite all of them, we still have only had four FDA approved drugs and one device to treat brain tumors in the past 30 years. Our predominant standard of care options remain surgery, chemotherapy, and radiation, and there has never been a drug or device approved specifically for pediatric brain tumors. We had a decent run between 1998 and 2014 with 78 investigational brain tumor drugs entering the clinical trial evaluation process, but out of those 78, 75 got rejected. That means over the course of the past 30 years we have had 3 drugs approved. The multiple myeloma community has brought 10 drugs to market since 1998 – that’s 10 FDA approved drugs in 18 years, an amazing feat. Why hasn’t our community been able to do the same? The Moonshot might be able to do something about that.

Two of the Moonshot investments outlined within the Department of Health and Human Services (HHS) research opportunities to receive major support are Pediatric Cancer and the Vice President’s Exceptional Opportunities in Cancer Research Fund. These research opportunities are especially important to the brain tumor community, because they can be tied back to Diffuse intrinsic pontine glioma (DIPG) and Glioblastoma (GBM).

Prominent Humans of New York photojournalist Brandon Stanton recently turned his lens on Memorial Sloan Kettering Cancer Center patients, physicians, and researchers, specifically focusing on those effected by DIPG. In doing so, he helped the general public, millennials especially, gain a better understanding of the impact of the disease through visual testimonies. Medical advances over the past 50 years have greatly improved for children diagnosed with most types of cancer. For example, the survival rate for children diagnosed with acute lymphocytic leukemia has increased from less than 10 percent in the 1960s to nearly 90 percent today. However, these medical advances have not caught up for children with DIPG. In fact, they haven’t changed at all.

A child diagnosed with DIPG today, typically between the ages five and seven, faces the same prognosis as a child diagnosed 50 years ago. Brain tumors remain the most common cause of cancer-related death in children, and DIPG the leading cause of death from pediatric brain tumors. The median survival for a child diagnosed with DIPG is 9 months from diagnosis. 9 months. Less than 10% of children with DIPG survive 2 years following their diagnosis, and less than 1% survive for 5 years or longer. That means that the 100-150 children diagnosed with a DIPG each year will just have finished learning how to tell time on a clock before their time is up in this world. The research done through Moonshot has the potential to change those numbers by discovering new treatment options, and change those outcomes.

Glioblastoma falls under Vice President Joe Biden’s Exceptional Opportunities in Cancer Research Fund because of its high-risk, high-reward potential. This category is reserved for game-changing cancer research, and the National Brain Tumor Society’s Defeat GBM Research Collaborative is just that. GBM has a median survival of about 14.6 months, and a two-year survival of 30%. Looking down the line, only 10% of patients with GBM live five years or longer. The numbers don’t lie. GBM, one of the most difficult to treat cancers because of its resistance to treatment and high recurrence rate, needs as much research as possible in order to create another avenue for patients to explore when faced with the disease. Outside of quality of life impact, GBM, and brain tumors in general are a health care heartache for insurance companies, as well as a financial bank breaker for patients. Brain tumors have the highest per-patient initial cost of care for any cancer group with an annualized mean net cost of care in 2010-2020 US dollars projection at well over $100,000. At that financial cost, those behind the Moonshot have motivation to create better care and come up with treatment plans for the sake of patients.

The National Cancer Moonshot Initiative means more funds directed towards, and more of a reason to target DIPG and GBM. The National Brain Tumor Society has documented their involvement in the Moonshot Initiative very closely, updating patients on their commitments to the Moonshot and how we as patients ourselves #CanServe. I am sure that we can expect more updates from them as time goes on as a reliable source of up to date information for the Moonshot and the brain tumor community.

In the meantime, what do you think the Moonshot means for the brain tumor community?

What do you want it to mean?  What does it need to mean for you?

Charlie Blotner Precision Medicine Advocate

Charlie Blotner


Charlie Blotner is a senior undergraduate student in Family & Human Development at Arizona State University. Charlie has a passion for increasing clinical trial participation, and wants to empower patients to make the most informed medical decisions for themselves possible with the most research information possible. Charlie has spoken at Stanford Medicine X and believes in the power of patient storytelling. As a brain tumor survivor and patient advocate, Charlie co-moderates Brain Tumor Social Media (#BTSM) Chats on Twitter. More than anything, Charlie wants to be able to contribute to the work that helps patients to be able to breathe easier.
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