Last week, Vice-President Joe Biden and others made news saying we as a nation should commit ourselves to a cancer moonshot. Biden, who’s son Beau passed away from cancer in May of 2015 went on to meet with the Pope in Vatican City. One topic was reportedly regenervative medicine, usually meaning research in adult and embyronic stem cells to treat all manner of disease, especially cancer.
Hopefully the Vice President knows that hundreds of patients, survivors, caregivers, and loved ones will be visiting Capitol Hill this week as part of an outreach event to maintain awareness and ensure funding for one of the most deadly forms of cancer, the one that claimed young Beau Biden. All cancer is serious and most versions are life threatening. But the particular cancers in question here would, by most any measure, rank toward the top of the scariest kind you could ever have to face:
National Brain Tumor Society invites you to join us on May 2 – 3 for Head to the Hill 2016, our annual Washington, D.C. – based advocacy event. This annual event has become a powerful vehicle to ensure the voice of the brain tumor community is being heard on Capitol Hill. We hope you will be able to share this experience with us in 2016!
Young or old, rich or poor, progressive or conservative, cancer is a way bigger threat to the average American by orders of magnitude than terrorism or rogue immigrants. I had a chance to chat with two of the Society’s strategists, senior communication director Thomas Halkin and national director of marketing communications Michael Antonellis. Make the jump and visit their world for a minute or two, if you dare!
“Head to the Hill has become an important annual vehicle for many patients, survivors, caregivers, and loved ones to speak up about the issues important to the brain tumor community,” said Antonellis via email. “The voices of those who have been so deeply impacted by this disease are a powerful advocacy tool and can demonstrate to members of Congress the importance of creating policies that will speed the developments of new treatments and create better access to current therapies.”
Brain cancer distinguishes itself by affecting both the physical abilities and cognitive function of its victims. Whether it’s operable depends on the tumor’s location, size, type, blood flow, and how much more damage might be done to surrounding regions. A tumor could respond fully to chemotherapy and shrink away, leaving a space. Then there are the usual effects to neutralizing a chunk of brain. The patient might lose feeling in the hand or foot, or they might lose the ability to speak and still completely retain the ability to understand spoken words. But there are even weirder consequences.
A brain cancer patient suffering left-hemispheric visual neglect may lose the ability to visually comprehend what left even means. Show them an old-fashioned clock and all the numbers are distorted, pushed over to the right. For them, there is no such thing as left. It doesn’t exist. That’s just one example of what neurologists called agnosia, but there are many others.
For being such a “smart” organ, all the brain knows how to do when traumatized is swell dangerously, wedged inside a bony skull. The class of meds often used to control that swelling are corticosteroids, but they carry plenty of risk in the long term, too. Loss of immune response, medically induced diabetes, and extreme, rapid weight gain are a few possible side effects.
Damage caused by surgery, swelling, and steroids can leave survivors with loss of function and at risk for all kinds of problems including seizures—in fact, they may have to take anti-seizure drugs for the rest of their lives, they may never be cleared to drive again. Some will have to train every day with the intensity of a professional athlete for at least a year or two, dropping dozens of pounds before they find out how much of lost functions they might regain.
To facilitate treatment for those battling the disease and help survivors through the months and years of recovery that often follow when and if the battle is won, this year’s Head to the Hill will focus on asking for an increase in funding for programs at the National Institutes of Health (NIH), National Cancer Institute (NCI), and U.S. Food and Drug Administration (FDA).
“The NIH—through its institutes like the NCI—is the largest funder of brain tumor research in the world,” Antonellis explained. “We’ll also request Passage of the Cancer Drug Coverage Parity Act, which has bipartisan support in both the House and Senate. It would require private insurers to cover oral chemotherapy medications at an equitable level to intravenous chemotherapy. And lastly, we’re asking for Passage of the Childhood Cancer Survivorship, Treatment, Access, and Research, or STAR Act. Pediatric brain tumors are now the leading-cause of cancer-related death in the US for children age 14 and under.”
Both Halin and Antonellis stressed that they feel the pediatric cancer research environment in particular has been underfunded and inefficient. They’ve been working to change that and hope to make more progress this week. “The STAR Act has a number of provisions that would improve pediatric cancer research. It was introduced in both chambers of Congress in 2015 and has been picking-up bipartisan co-sponsors ever since. Now we want to see it move through the rest of the legislative process.”
About 25,000 malignant brain or central nervous system tumor cases will be diagnosed each year, and that number has been growing. But this isn’t a single disease, it’s a diverse suite of them involving different types of mutations and tissues. How the tumors originally develop and change can be classified in lots of different ways, but a reasonable layman’s recap might yield more than 100 distinct forms of brain cancer. This year, an estimated 17,000 Americans will succumb to one of them. The average survival rate for all type of malignant brain tumors is in the range of a dismal 33 percent for the first couple of years or so. For those with one of the deadlier types, only a comparative handful, single digit percentages in some cases, will make it to their fourth or fifth year.
One such patient who is attending the Head to the Hill event is a friend of mine. Right before Christmas 2013, an out of the blue seizure signaled GBM multiforme. The culprit was grade 4 tumor roughly above her left inner ear about the size and shape of two cherries tied together at their stems. Initially, her parents were quietly told she might only have three to six months, the latter parts would probably be spent in the ICU or at home under hospice care. Thanks to access to comprehensive medical care via health insurance, integrated lines of treatment, and a solid support network, she is now cancer-free. But it came at a steep price. No matter how hard she trains to regain her independence, odds are she will always struggle with some degree of disability every day for the rest of her life.
If she gets a chance to address lawmakers at any of the meetings she might say something like this:
I realize there’s a big debate in D.C. on what government should and should not fund. I understand that debate gets even more heated in an election year. But we need your help. Look at us, look at me, and keep in mind that when it comes to brain cancer, I’m considered one of the lucky ones.
Cancer is the second leading cause of death in the US, and while brain cancer is not the most common form of it, it is one of the most deadly. All cancer is personal, that cannot be downplayed, but there’s an extra vicious side to any disease that can so cruelly and systematically, rob its victims of their minds and bodies at the same time. To learn more about the National Brain Tumor Society or keep up with what politicians say and do on issues critical to the community, visit the organization’s homepage and about pages.