Advocacy and the MS Community

By Kyle Pinion

When one thinks about advocacy especially in this very heated political climate, there are certainly some tough connotations that have be dealt with, particularly in regards to the concept of lobbying. But in truth, the concept of advocacy does not have a political slant, and in the world of non-profits it is simply the act of representing the needs of people who do not have a voice within the halls of the US Capitol. MSAA, as a member of the broader MS Coalition, is proud to be an advocate for people with MS, and in turn an advocate for the greater disability and chronic disease community. Year in and year out, working with our partnering organizations within the MS Coalition, we sit down with members of Congress and their healthcare staffers to discuss issues of importance to the MS population. Some of these topics may include MS research funding, or enhancing the federal government’s commitment to understanding the true incidence and prevalence of MS within the United States, or matters related to easier access to durable medical equipment (DME). These are just broad examples, but they give you a sense of how wide-ranging some of these national efforts are.

But MSAA’s advocacy work doesn’t stop there. We also are actively engaged in issues at the state level. Utilizing local thought leaders, medical professionals, those living with the disease and other coalition partners, we advocate for the needs of the MS population in all fifty states where barriers and inequity may exist. For example, if an issue arises where an insurance provider may not allow for open access for all MS therapies, that is an area in which we would commonly take action. Another instance may be the availability of rehabilitative physical therapy for people with Primary-Progressive or Secondary-Progressive MS. if it impacts the MS community and can be addressed at the federal, state, or local level, MSAA is proud to take action and work with our partners to seek solutions for these issues with both elected and private entities.

In addition to our work “behind the scenes”, our organization also seeks to educate individuals living with MS and their family members about how to best advocate for themselves and the community they are a part of. Self-advocacy is one of the most powerful tools available to the MS patient, and it’s our goal to inform our clients about the strength of the individual voice when speaking on issues of importance. Your elected officials want to hear from you, and while they value my and my colleagues’ time when we visit their offices, the truth is you are their constituent and your experience as a constituent within the district they represent means even more. No matter what you’re able to do – be it an email, a phone call, or even the all-important in-person visit – that sort of self-advocacy not only benefits you, but it also allows you to represent all of the people with MS that cannot be in that room. And therein lies some really incredible power. In that way, your voice really can turn the tide.

Don’t be afraid to get started, and let us know how we can help. It’s what we’re here for.

*Kyle Pinion is the Director of Public Policy and Advocacy, as well as the Southeast Regional Director for the Multiple Sclerosis Association of America. Before coming to MSAA, Kyle was the Director of Public Policy and Advocacy for the National MS Society – Georgia Chapter where he acted as the chief lobbyist for the chapter in the Georgia State Legislature, and their staff representative with the US Congress.

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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