I was thrilled to be able to participate in the National MS Society’s Public Policy Conference (PPC) in March. This is the 3rd year I have attended, and the 25th year that the conference has been held. It is by far my favorite advocacy event, and I look forward to it all year.
The first day of the conference always begins with learning about the most pressing issues facing people living with MS, and the current political climate in Washington. On the final day of the conference we have the opportunity to meet with our legislators and discuss our issues one-on-one with them on Capitol Hill alongside other inspirational MS activists from our home states.
This year we focused on three issues: funding for MS research, the Neurological Diseases Act, and making MS medications more affordable and accessible.
Funding for MS Research
For fiscal year 2017 we are requesting that the National Institutes of Health’s (NIH) budget be increased from $32.1 billion to $34.5 billion. The NIH is a large organization that researches a huge variety of diseases, MS being one of them. They primarily grant funding to “low risk, high reward” research, meaning that it is more difficult to receive NIH funding for a radical, experimental idea. The NIH focuses primarily on basic research that has a good chance of yielding results that can easily and quickly be translated into practice. For the more cutting-edge research ideas, the MS-CDMRP (Congressionally Directed Medical Research Program) is a great source of funding. Because there is a higher incidence of MS among veterans, the Department of Defense budgets a certain amount of money towards the MS-CDMRP each year. We are asking that the 2017 MS-CDMRP budget be increased from $6 million to $10 million. This program is especially crucial because every dollar goes towards MS research and nothing else.
Last year at the PPC, one researcher gave a great example of how the NIH and the MS-CDMRP differ when it comes to research grants. A group of scientists who were funded by the NIH were studying the effects of a drug, and incidentally found out that it could help regenerate myelin (a concept that was thought to be impossible at the time!). They then applied for funding through the MS-CDMRP who took a gamble and gave them the money they needed to explore whether or not they could actually do the impossible and restore damaged myelin. Pretty exciting stuff!
Unfortunately, since 2012, NIH spending on MS-related research has decreased by more than $20 million, and less then 15% of the research applications submitted to the various funding agencies actually receive the grants needed to move forward. Last year we received bipartisan support for an increased investment in both the NIH and the MS-CDMRP, and this year we are again asking for the support of Congress.
Neurological Diseases Act
We have many brilliant minds working to solve the MS puzzle, but one of the pieces we can’t quite seem to place is why and how MS develops. Part of the problem is that we don’t have any way of tracking where in the country MS occurs most frequently, or how many people are affected by it. Without this basic epidemiological data, we are simply guessing at how many people there are in the US living with MS and where the most cases are seen. The last national study of the incidence and prevalence of MS was done in 1975, so we are basing a lot of our current assumptions on very outdated information. Being able to track MS could help us finally unlock some of the potential environmental triggers, and ultimately it could help us prevent MS from developing.
The goal of the Neurological Diseases Act is to create a data collection system through the Centers for Disease Control (CDC) that would track where MS and other chronic neurological disorders develop, and how many people in the US are affected. This is done anonymously, meaning that any identifying information would not be included in the data that is collected. The great thing about this bill is that it also helps people who are affected by other diseases, such as Parkinson’s, and isn’t just beneficial for people living with MS. The bill has already passed in the House of Representatives, and has broad bipartisan support in the Senate.
Access to MS Medications
MS is a very expensive disease! The cost of disease-modifying therapies have skyrocketed an astounding 300% between 2004 and 2015, and despite a new generic medication hitting the market, they continue to cost an average of $60,000-$70,000 per year. When the first medication for MS became commercially available, it cost $11,500 per year; today that same drug costs more then $70,000. When you combine the extremely high costs of drugs with the poor prescription coverage that a lot of people have, it is a recipe for financial disaster. Many people are responsible for paying 20-40% of their medication costs, sticking them with bills for hundreds — even thousands — of dollars every month. Furthermore, because of the high drug costs, people with MS are very often targeted when it comes to insurance denials and prior authorization requirements, which lead to delays in treatment. The National MS Society is working hard to advocate for solutions that would make medications more affordable and accessible. We are hoping that Congress allows us to hold a hearing that would allow real people affected by this issue to tell their stories; we want to start a conversation about how we can work together to find a solution.
Last year, by meeting with our representatives, MS activists help drive change in a very real way. Congress approved a $1 million increase in the MS-CDMRP budget, as well as a $2 billion increase for the NIH. We also made great strides on other issues including providing respite programs for caregivers; we succeeded in getting many representatives to cosponsor MS-specific legislation; and many representatives even joined the Congressional MS Caucus. Our stories have the power to affect change and to improve the lives of others living with MS. I hope you will join us by becoming an MS activist!
Article by: Stephanie Buxhoeveden MSCN, FNP-BC Stephanie 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.
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