MS advocacy update
by James Stewart
This year has been an exciting year in the area of MS advocacy and I thought it would be a good time to bring everyone up to speed as to what has been happening.
As many of you may remember, I have been serving as an MS District Activist Leader with the National Multiple Sclerosis Society, and this brings me close to a number of legislative issues that are being worked on both at the state level and at the national Level. I was very fortunate this year to be invited to Washington D.C. to attend the MS Society’s Public Policy Conference to address issues of national importance.
At that conference, the primary advocacy work was to address three areas of priority.
1) Affordable, Quality Health Coverage – this is a general request to Congress to support people living with multiple sclerosis by protecting their access to affordable, quality health insurance coverage. With the threat of the ACA being repealed, this is an important topic.
2) MS Research Funding – This is funding to conduct scientific studies to understand what causes and what may cure MS.
a. We asked congress members to support funding the National Institutes of Health with at least $2 Billion more dollars over the FY 2017 funding level (of $32.1 billion);
b. We asked congress members to fund the Congressionally Directed Medical Research Program (MS CDMRP) at the $10 million level in the final 2018 spending bill; and,
3) We asked congress to fund $5 million for the Centers for Disease Control and Prevention to fund the National Neurological Conditions Surveillance System in FY18. This is a follow up to the signing of the 21st century cures act, which was signed into law late last year. This was a big accomplishment last year. We are asking for funding to be appropriated so this data collection can begin. This will help to update data collected from the mid 1970’s and will go a long ways to better understanding the current population of people living with MS.
On the state level, there is excitement over the possibility of SB 17 getting the votes it needs. SB17 is a common-sense approach to providing transparency in drug pricing which will ensure affordable and accessible prescription drugs for California consumers. There is a similar bill in Congress that I am asking Congressman Thompson to support. It is the FAIR Drug Pricing Act (H.R. 2439 / S. 1131). This act will help to explain and mitigate the continuously increasing prices of medicines people with MS and their insurance companies pay. We also talked with State Senators and Assembly members about AB 806, which is a Caregiver Tax Credit.
To keep abreast of these topics, and to learn more about MS, I suggest referring to the NMSS website: http://www.nationalmssociety.org/
Under the “Get Involved” tab, there is a link to “Advocate for Change” where you can learn more about the Current Advocacy Issues and Results.
In addition, to volunteering with the National Multiple Sclerosis Society, I am also participating as a patient advocate with the Americans for Cures, focusing on Multiple Sclerosis. More information about that organization can be found at their website: https://americansforcures.org/
Please let me know if you have any questions. I can be reached at 707-480-7572 and if you have Twitter, you can follow me at: James Stewart@james_jamstew
District Activist Leader
National MS Society
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