In September, the U.S. Congress passed a Continuing Resolution to keep the government funded through December 11, 2015, meaning federal agencies and programs receive a 0.2108% across-the-board cut in compliance with the Budget Control Act and Fiscal Year (FY) 2016 budget caps. The goal is to work out a comprehensive budget for FY 2016 before December 11th. This Fall two MS researchers joined forces on Capitol Hill to rally for federal MS research funding. Together they’re sharing their experiences to help us all better understand how the ongoing budget negotiations will affect their work.
Lori Blanchfield, PhD, perspective:
As an MS researcher at Emory University (Atlanta, GA) I had the opportunity to rally for MS research funding through the National Institutes of Health (NIH) on Capitol Hill this fall. First we spent an afternoon learning about the political climate and what “asks” we would make to help advance research priorities. The following day, we went from meeting to meeting across chambers of Congress to share our perspective on research funding—as activists and as researchers. We want elected officials to understand the kind of progress we’ve made in MS research and the real consequences of decreased funding levels. I see the impact of NIH funding on a daily basis because our laboratory supports 12 researchers.
Without grant funding, including grants from the NIH, many young scientists will choose alternative career paths. I am one of those scientists that did not attain NIH funding and had to think seriously about walking away from academic research. Instead I submitted my proposal to the National MS Society and was luckily awarded with a Society fellowship—thank you!! My story is not an anomaly; I came to Capitol Hill in the midst of the budget battles to ask for NIH funding that is robust, sustained and consistent so that other young scientists can attain the early career support that I was not able to obtain.
Jennifer Orthmann-Murphy, MD, PhD, perspective:
My father was diagnosed with MS in his late 20s, was treated with an interferon for many years, and did well for nearly four decades despite developing secondary-progressive disease. He walked me down the aisle at my wedding 10 years ago, but now he is almost immobile: dependent on a wheelchair and full-time care. Because of his MS, I have studied neuroscience, pursued a medical degree studying genetic diseases associated with myelin, and completed a neurology residency.
People with a new diagnosis of MS often ask me, “Will I end up in a wheelchair?” They are essentially asking whether or not they will develop progressive MS. But we don’t have the tools to make this prediction in MS, and so I cannot alleviate these fears. While there are effective treatments that can delay – and in some cases even prevent – disability, we do not have a cure for MS, and do not always know who will respond to available treatments. In fact, we still have a long way to go to understand what causes a progressive course of MS.
I am now training to take care of people with MS as a clinical and research fellow, performing cutting-edge research to understand how to repair myelin. I love my job. I am very fortunate to be funded by the National MS Society to train as both an MS neurologist and a scientist. While exciting, this time in my career is also frightening, because to start my own lab I will need significant monetary investment in my ideas. The NIH is the world leader in investment in research, and my goal for the source of these funds. My success in studying progressive MS – and helping to answer questions, like whether my patients will become disabled, or how to prevent disability – is dependent on the availability of these funds.
The massive increase in NIH funding to cancer research over the latter half of the last century led to dramatic advancements in our understanding of the cause of cancer, along with the development of incredible interventions. Last year my mother was diagnosed with lung cancer, despite never smoking. Her rare type of cancer has a specific, targeted treatment (developed in the past decade). She took an oral medication without the typical side effects of chemotherapy, and her tumor shrank. This summer she had curative surgery and is now back to work. This outcome is amazing, and demonstrates the potential of NIH investment in the future of medical care and cures.
Speaking with my representative and senators in Maryland about the importance of investing in research, as well as sharing the stories that motivate me as a physician, a scientist and a daughter, was a personal triumph, but it’s not enough. I will continue to advocate for people living with MS, my family and the future of medical research. The potential outcomes from investment in neuroscience research are immense: I know that we will begin to understand the mechanisms and cures of brain diseases over the course of my lifetime.
Contact your Members of Congress about federal research funding in 2016. It only takes a minute to add your voice to Lori’s and Jennifer’s by sending an email today.
Lori Blanchfield is an MS researcher at Emory University. Jennifer Orthmann-Murphy is a researcher at Johns Hopkins University. Both Lori and Jennifer are National MS Society postdoctoral fellows.