MS Advocacy and Public Policy on Capitol Hill

  • What are you doing with your extra day this year?  I will be preparing for the 2012 National MS Society Public Policy Conference which is being held here in the Washington, DC, area next week.  I will be blogging during the conference, bringing the updates and issues to readers on the NMSS blogs.

    In preparation for talking about public policy, I was discussing terminology with Rob the other day.  I wanted to know his immediate thoughts on advocacy and activism.  It was interesting to dissect the nuances of the words.  We even brought some other words into the conversation.


    Since starting my own blog in 2007, I have called myself an MS patient advocate.   How am I an advocate?  I work to raise awareness of issues from the patient’s point of view.  I help to educate others regarding the disease and its effect on our lives.  I have even joined committees at the NMSS where I was one of only a few patient voices, or sometimes the only voice, to express what the MS community needs and wants.

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    Do you call yourself an advocate?  What does that word mean TO YOU?


    In the online health community, an organization called WEGOHealth has begun using the term - health activist - to describe many of the patients, and non-patients, who are active online and offline in trying to raise awareness and improve the lives of patients.  This term has always made me pull back just the tiniest bit because my initial thought is that an activist is someone who is ACTIVELY doing something to further a cause.  My initial reaction is that writing on a blog or website is somewhat passive to me.

    But then, I only have to look at my inbox and messages to see that what I do definitely does help patients in our MS community.  If only the cause is to provide educate, resources, and support, we each are working to further that cause in our own ways.  However, I doubt that our congressmen or their legislative assistants are scouring the web and patient communities to see what is important to us on a public policy level.

    Have you been an activist for a cause?  If so, what did you do to further the cause?

    Public Policy

    When I looked up the phrase “public policy” in the dictionary which is Google, I found an article written by Dean G. Kilpatrick, Ph.D., from the National Violence Against Women Prevention Center at the University of South Carolina.

    • “In any society, governmental entities enact laws, make policies, and allocate resources. This is true at all levels. Public policy can be generally defined as a system of laws, regulatory measures, courses of action, and funding priorities concerning a given topic promulgated by a governmental entity or its representatives.  Individuals and groups often attempt to shape public policy through education, advocacy, or mobilization of interest groups.”

    So a discussion of public policy turns our attention to the government and lawmakers, whether at the federal, state, or local level.  It also involves the allocation of resources which is often translated into how much money will be set aside to support a specific program or organization within the fiscal budget.

  • MS Activists on the Frontline

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    In looking at the agenda of the NMSS Public Policy Conference, the fiscal budget is one area in which MS Activist will take their voices to Capitol Hill to advocate, or lobby, for continued funding or increased funding for MS research.  Activists will also urge lawmakers to reauthorize programs which aim to assist MS patients and their families, such as the Lifespan Respite Care Act.

    I am looking forward to learning more about the recent victories the National MS Society, together with other patient advocacy organizations, have won in recent years.  I am also eager to gain a better understanding of the lobbying process as I aim to demystify public policy. 

    While I’m at the conference, is there anything specific that you would like to read about? 

    One thing which is on my agenda is to bring you the information you need to become an MS advocate/activist from your own home.  Letters, emails, and phone calls to legislators really do make a difference.


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: February 29, 2012