We Rally: The Impact of Federal Medical Research Funding

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.

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  • Joseph Salacki   Nov 3, 2015 4:41 PM
    Lori and Jennifer ,

    The two of you are now my heroes . Thank you for your work on progressive MS. I have been living with the disease for 14 years officially but I had my first symptoms 20 years before that. I just recently got news of the treatment on the horizon for my disease. It has been a long time coming.

    I'm 57 years old and significantly disabled. Fortunately, I have a very supportive family because taking care of myself is out of the question. I often tell people that the only thing that works is my brain. My wife has been spent huge fundraiser for the ms society . At least $100,000 over the last 10 years. Of course, I have done everything I can do to support her efforts . I hear the talks at the fundraisers and of course the numbers get all of the attention but they couldn't help but wonder we're exactly does that money go and who benefits from It. Now I know ! I just heard almost directly from two real people that have benefitted from all of th8t Money. Lopes , Surrey about that . I must not be speaking clearly ! LL! It's time to go . Thank you ladies!
  • Elaine Marzocchi   Nov 3, 2015 6:35 PM
    Thank you for your dedication. ..my sister has MS...KEEP UP THE FIGHT FOR A CURE!!
  • Denise Coleman   Nov 6, 2015 11:31 AM
    Thank you for speaking out and rallying on behalf of all of us with MS, who can benefit from research. We need to support increased funding through whatever funding avenue is possible, NIH, DoD, and any others. It is wonderful that the two researchers stood up on our behalf and we should try to arrange for a major rally at which researchers, medical professionals, people with MS, their families and friends, media, and supportive legislators ( at least those we can identify), met at the steps of the capital and had a visible demonstration of the impact MS can have on individuals and the people in their lives. Research on Neurological Diseases can have a positive impact on many illnesses, such as Parkinson's, Alzheimer's, Brain Injury, and any other illness that affects the Brain or the Central Nervous System. Who can lead this rally? Can a group of related organizations get together to plan it and perhaps we can find funding to cover the cost of some of the people with these illnesses, especially those who can no longer work and are on disability so are not able to afford the cost of the trip and lodging. I am willing to help but we need to have a legitimate organization or person lead the force.
    Lori and jennifer, you have started the effort. Will you know work with us to take it further so we accomplish two things:
    1. increase medical research funding and,
    2. make sure that research findings get to medical professionals so that patients benefit from the research.
    Thank you from a woman who has lost so much, physically, emotionally, financially, socially, spiritually, and personally as a result of the progressive impact of the symptoms of MS. It's time to raise our voices and ask for support.
  • Maria B. Suarez   Nov 11, 2015 12:52 PM
    Investing in MS research is of great importance to those with MS. I advocate for people living with MS for the future of medical research. 0utcomes from investment in neuroscience research are immune in beginning to understand the mechanisms and cures of brain diseases over the course of our lifetime. I pray MS and other diseases become obsolete. Praise the Lord.
  • Donna Batman   Dec 14, 2015 3:03 PM
    I have been diagnosed with MS almost 5 years. I am a registered nurse and have been misdiagnosed for 10 plus years. My health insurance had paid for testilng during that time that was not needed. I am angry at myself for trusting doctors that should have diagnosed me sooner. I feel like I paid for a college education that I cannot use til retirement. I had to go on disability sooner than I wanted. We need to have a voice and get help for finding a cure ,for MS and other diseases for those people who were born and raised in the USA. I always here of how much money is sent and used here for foreigners. I am angry and want to feel important for what I have earned and accomplished without the help of government spending.
  • SUSAN SIEGEL   Aug 25, 2016 11:42 AM
    My friend, Bill Riddle, died on June 8, 2016, from complications associated with secondary progressive. He was diagnosed in his 20's and spent his life as a medical physicist at Vanderbilt University Medical Center evaluating 3D imagery/MRIs.
    Until I met Bill, I knew very little about this disease. Six years later, I know more but am keen to learn everything I can in hopes of funding efforts to find the cause and/or cure. From what I can tell, science knows little about the Neuro System or what causes this horrific disease. Therefore diagnostic and treatment advances seem THE priority. I want more!

    Two years ago, Bill asked me to be his power of attorney. A nurse, I knew the system, was no stranger to championing patients, and was intimately familiar with his wants, needs and desires. He lived 2 more years.

    Bill fought hard to stay strong, eat right, work out, take his meds and stick to a stringent routine. He remained open to the options. Yet, after 40 years of MS, his body succumbed to the slow, steady deterioration, typical of MS.

    I remain frustrated with how little his doctors and those who cared for him really knew and what I had to do - with Bill coaching me - to get them to react to what was needed. I feel for patients, who have no advocate fighting for them to make sure they get the very best care available, especially when they can't talk or express themselves.

    Today, I continue to recover from the last two years of service, miss him madly and am committed to finding a cure. I am keen to speak with you sometime soon.

    Welcome your thoughts.
    be well,