Every year, more than 300 MS activists meet in Washington, DC to discuss important legislation and funding for MS research efforts during the National MS Society’s Public Policy Conference. And guess who was lucky enough to attend the conference this year? That’s right — yours truly!
The conference consists of two days of panel discussions and presentations to inform participants about the issues and to talk about the current political climate in Washington. Then on the last day, everyone heads to Capitol Hill to meet with their home state’s legislators.
This year, a group of MS researchers also attended the conference, which was simply amazing! They shared the details of their current projects with us, and even took the time to answer our burning questions. To be in the same room with so many brilliant minds, all working towards one common goal was electrifying. They know they are on the verge of cracking the MS code, and you can feel their excitement. One researcher even confided in me that he’s confident we will have a cure within his lifetime, but as a backup, he’s grooming his son to carry the torch if necessary. Another researcher presented his amazing work on remyelination — a possibility that we couldn’t even conceive of just a few short years ago!
The experience filled me with so much hope and showed me why all my work as an MS activist is so crucial. We have an incredible group of people who are homing in on revolutionary treatments and even a cure. All they need is enough money to do the research and make it happen. That’s where we all come in.
The most important pieces in solving the MS puzzle are funding and legislation. Research cannot happen without money, and change cannot happen without new and better laws.
MS research is funded in various ways, but the focus of our conference was increasing the 2016 budget for the National Institutes of Health (NIH) and the MS Congressionally Directed Medical Research Program (CDMRP). Currently, fewer then 20% of the research proposals that are submitted are actually funded. Think of all that potential that’s falling through the cracks! Research is the only way to find the cause of this disease, new treatments, and ultimately a cure.
The National MS Society funds a lot of MS research, but they can’t do it all on their own. While the NIH budget gets divided among many projects for many different diseases, the CDMRP is solely for MS-related research. It is funded through the Department of Defense’s budget because there is a strong connection between veterans and MS. A 2003 study published in the Annals of Neurology found that there were over 5,000 Vietnam and Gulf War vets diagnosed with “service-connected” MS, and over 23,000 US veterans receive care for MS through the US Department of Veterans Affairs (VA). This is a prime example of how MS research doesn’t just benefit a select group of people. It would positively impact the lives of veterans; people with traumatic brain injuries; spinal cord injuries; and those living with other neurological diseases such as Alzheimer’s, ALS, and Parkinson’s disease.
In addition to funding, we discussed current legislation, with the goal of having legislators cosponsor MS-related bills. This year we were focused on the Advancing Research for Neurological Conditions Act (HR 292), and the Ensuring Access to Quality Complex Rehabilitation Technology Act of 2013 (S.948).
The Advancing Research for Neurological Conditions Act (HR 292) would ensure that the government would back a better data collection system to help further current and future research efforts. We have only extremely outdated data from the 1970s to track the prevalence of MS in the US. Tracking the incidence of MS through a national data collection system run by the Centers for Disease Control could help us see if things like vitamin D deficiency, infection with the Epstein-Barr virus, or neurotoxin exposure play a role in the development of MS. HR 292 is not limited to helping those with MS; it would track other neurological diseases, such as Parkinson’s disease, that are also in desperate need of a better data collection system.
The Ensuring Access to Quality Complex Rehabilitation Technology Act would help patients directly. The term complex rehabilitation technology (CRT) includes personalized manual and power wheelchairs, seating and positioning devices, and other specialized equipment that allows people to maintain their independence despite more advanced disease. Basically anything that’s more advanced than a standard walker, cane, or wheelchair is considered CRT. Unfortunately this technology also comes with a hefty price tag. Currently, Medicare only covers CRT if it’s for use inside the home. If someone needs a power wheelchair in order to leave their house? Too bad, that’s not covered! How does that make any sense?
We heard from a physician who had to retire, and was basically on house arrest, after his progressive MS confined him to a wheelchair. Luckily he was able to purchase his own CRT. With it, he was able to continue working and even travel the world.
Another woman spoke at last year’s conference about how she would get such bad pressure ulcers in her standard wheelchair because she lacked the upper body strength to turn and move herself. She was admitted to the hospital more than 20 times with severely infected wounds. Now, her CRT is able to turn her and allows her to change her position as often as she needs to with just the touch of a button.
It’s absurd that her insurance company would pay for all of those hospital admissions, but not for the $20,000 wheelchair that ultimately kept her from ever needing to go to the hospital for wound care again. CRT allows people to keep living their lives, and it reduces the burden on Medicare by preventing expensive complications. I consider it vital to ensure that people with MS (and other conditions) have access to CRT when they need it. My hope is that the work of MS activists today will help me later should I ever need access to it myself.
The Hook, Line, and Sinker
Advocacy is a powerful tool. We use our voices, our connections, and our passion to drive change. The first two days of the conference are devoted to helping us develop a “hook, line, and sinker” for our meetings. We all have some connection to these issues, and by telling our stories we can help our legislators understand that they aren’t looking at just another bill or a line in a budget. And it truly works! I’ve learned by meeting with almost every senator and congressman from my state that they do care about their constituents. They have laughed and even cried with me as I’ve shared my story with them. They keep in touch, show up at MuckFest — one even dropped in on me once, unannounced, at work! However, they only support issues that they know the voters care about. So don’t be afraid to be a squeaky wheel.
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Stephanie Buxhoeveden MSCN, FNP-BCStephanie is a nurse practitioner who was diagnosed with MS at age 25. Shortly after being diagnosed she realized she could use her experiences as a patient to make a difference in the lives of others, so she became a multiple sclerosis certified nurse. Stephanie completed her master’s in nursing at Rutgers University, and now specializes in the care of people with MS and other neurological diseases.
Her blog, www.justkeepsmyelin.com, offers a unique perspective on MS from both a healthcare provider’s point of view, and through the eyes of a person living with the disease every day. Her mission is to bring compassion, humor, and a deeper understanding of MS to anyone who reads it. She also writes for MultipleSclerosis.net, MSFocus Magazine, serves as a District Activist Leader for the National MS Society and is on the membership committee of iConquerMS.