Parkinson's Advocacy: Let Your Voice Be Heard - PMD Alliance

“Speak your mind, even if your voice shakes.” 

It’s one of my favorite quotes, attributed to social activist Maggie Kuhn.  For many people, raising their voice in the public policy arena can be intimidating.  Some think they’re not informed enough on the issues.  Others have difficulty separating the rough and tumble world of politics from policymaking.  For some, the prospect of any sort of public speaking—let alone sharing personal stories and perspectives—is a non-starter.

Yet without the voices of people who are directly impacted by the policies considered by elected officials, laws can be unimpactful—or worse yet, do more harm than good.  However, when lawmakers considering health care policies hear from their constituents, take the time consider how living with a disease could be positively or negatively impacted by the proposal and put a human face on what can sometimes be considered an abstract issue, patient-friendly, meaningful change can be achieved.

Parkinson's advocates in Washington, D.C.

Our friends from the Houston Area Parkinson Society at the Capitol.

For people living with Parkinson’s and other movement disorders, the prospect of speaking with an elected official, writing a letter or e-mail or testifying before a legislative committee can be overwhelming.  You may worry that your voice may not be strong enough when you’re asked to share your story.  You don’t consider yourself someone who “has a way with words”.  Perhaps you worry you’ll experience medication “off time”, making tremors noticeable or your body feeling rigid and stiff.  The risk of having to sit for long periods of time or walk to multiple offices may be too much.  Every one of those fears is entirely legitimate.  However, no one can tell the story of Parkinson’s and movement disorders better than someone fighting the disease every day.  Health care providers, key opinion leaders, researchers, care partners—each one has an important role to play in sharing our community’s perspectives.  But no voice is more powerful than the patient voice…your voice.

The job of government affairs teams (also known as the often-times dreaded title of “lobbyists”) is to maximize the opportunities for patients to tell their stories.  I’ve often referred to government affairs teams using a football analogy.  We’re the offensive line, blocking and creating holes for you (our running backs) to help move impactful public policy into the end zone.

Crafting good public policy requires several key components:

  1. An idea.

    What’s the problem we’re trying to solve?  Do key stakeholders agree that there is an issue that potential legislation could address?  Once you’ve identified the issue and potential policy solutions, you’re on your way.

  2. Good data

    . Do we have good quantitative and qualitative evidence to prove our points…or do we need to collect it?  Opinions are fine, but verifiable data to support your key points is most impactful.

  3. Meaningful legislation

    . Once we know what we’re trying to do and why it’s necessary, crafting a bill that is strong and meaningful becomes the priority.  Words matter, especially when crafting a law.  Passing legislation isn’t easy—and no one wants to waste precious resources on meaningless policy.

  4. Strong leaders.

    Finding the right legislators to introduce and champion your legislation is critical.  They should know the issue and how the policy solution addresses it, serve in key positions (relevant legislative committees, party leadership) and most importantly, they should be passionate and motivated to get the bill passed.  Legislative champions are often created through direct interaction with patients.  Personal stories move hearts and develop minds.  This is important since your legislative leaders often become the public face of the legislation as it moves through the legislative process.

  5. A multitude of voices.

    The best legislation rarely succeeds if it doesn’t have a diverse group of voices offering support.  Patients, health care providers, researchers, the innovators (biopharmaceutical and medical device companies), social workers, care partners and other impacted patient organizations play a key role in creating coalitions that are an important role in creating legislative momentum.  From these coalitions, the right voices can be identified to speak to various legislators, their staff and the media throughout the process.

  6. Patience.

    Passing legislation is not an easy task. It can take many months and sometimes, many years.  If the issue you’re raising is complex and/or controversial, it will take time to educate policymakers and refute the opinions of your opponents.  Go into the whole process realizing that no matter how “right” you are, it can take time to get the political and legislative stars to align.

Crafting laws in our country can be a daunting (and sometimes not so pretty) task.  Yet we each have a role to play in ensuring our health care system works for patients.  As opportunities arise to spotlight the voice of people with Parkinson’s and other movement disorders, you can rest assured that the Parkinson & Movement Disorders Alliance team will be by your side if you choose to engage in the policymaking process.  You’ll be informed, equipped, encouraged and supported.  We’ll help develop tools for you to share your story in the most effective way possible—whether it’s a video recording, a written statement or a face-to-face interaction with an elected official.

Your voice, even when it shakes, plays the pivotal role in making sure that public policy works for the people who need it most.

Want to learn more about the role of policymaking and PD? Watch our Ending PD Book Club with Ted Thompson.
Greg Chesmore Headshot

Greg Chesmore serves as a strategic advisor on public policy to the PMD Alliance and is the CEO of Gridiron Public Affairs.  He has more than 25 years of experience in government affairs working for non-profit advocacy organizations, the federal government and the innovative biopharmaceutical community.  Greg’s partner, Chad, was diagnosed with Young Onset Parkinson’s 19 years ago at the age of 33. 

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