advocacy

Advocacy 101 - Toolkit

Your voice matters! You can advocate on behalf of patients living with these conditions around the United States in several ways.  You have the power to effect real policy change that will improve the lives of patients and families living with Chiari, syringomyelia, Ehlers-Danlos syndrome (EDS) and many related disorders! This toolkit describes why it's important to be an advocate, what you need to know to advocate effectively, and how you can do it so you make a real difference!

Why Be an Advocate?

Direct contact with your elected representatives and their staff is a big deal. Over 90% of Congressional staffers report direct contact with constituents as influencing their decisions when discussing policy with elected officials.[1]

That direct contact can look different.  Maybe it's a well-written email/letter, or a personal meeting with legislative staff.  Maybe you participate in a coordinated social media campaign with similar patients and family members.  Or, maybe you simply attend a local event hosted by your elected official to introduce yourself and your cause...

No matter what your advocacy looks like, it is important!  An estimated 1 in 100 Americans are impacted by Chiari, syringomyelia and related disorders.  But these conditions are still poorly understood.  The only treatment options available are either invasive and expensive brain surgery, or the piece-by-piece management of symptoms when the root cause can't be identified.  All of this makes getting insurance coverage difficult and then, even if it is covered, it can still end up being expensive.

Because of this, Chiari, syringomyelia and related disorders represent a significant drain on our health care system.  More needs to be done to ensure families can get back to living, working and playing together without worrying too much about these disorders.

Changing policy through your advocacy efforts is the only way to advance research in the field, increase health care access, and improve long-term outcomes for patients and their loved ones impacted by Chiari, syringomyelia and related disorders.

So, really... Your voice matters.
 

What Matters? Policy Issues & Legislation

There is always new legislation being proposed at both the federal, state and local levels that is relevant for patients and families living with all types of disorders. 

We will do our best to give you the best information on at least a yearly basis, but policy changes fast... things may have changed by the time you finish this sentence!  So, be sure to stay up-to-date on legislation that is specifically relevant to you and your family.


Policy Priorities

To try and keep things manageable, we do our best to set policy priorities every year that benefit families impacted by Chiari, syringomyelia and related disorders. Below are just some of the policy areas that you can choose for your advocacy efforts over the next year.  If any of the following policy areas or specific pieces of legislation have particular meaning to you, feel free to include them in your advocacy! Have questions about how to do that? Contact Kaitlyn.


Advancing Research

The only way to ensure a better future is to continue funding critical research agencies like the National Institutes of Health, AHRQ, CDC and others, which use those dollars to fund groundbreaking studies that better understand and treat these disorders.  You can find a list of previously or currently funded federal research by visiting ClinicalTrials.gov and searching for your specific disease of interest.

Specifically, we urge elected officials to support legislation that will:

  • Maintain or increase funding available for NIH/NINDS, CDC and initiatives such as the Precision Medicine Initiative that fund large-scale research in neurosurgical disorders
  • Maintain or increase funding for fellowship/educational grants for physician-scientists in training
  • Support larger and more innovative studies, capable of implementing new technologies like AI to speed up breakthroughs
  • Support Chiari malformation, syringomyelia and related disorders like Ehlers-Danlos syndrome to be included as conditions eligible for funding through the CDMRP

Improving Health Care

We fully support the development of a health care system that best serves patients and the clinicians who treat them.  We support legislation that:

  • Ensures equitable access to medical imaging and clinical interventions and supports clinical research that assists in minimizing access gaps
  • Ensures equitable access to insurance coverage and maintains appropriate out-of-pocket spending limits for families
  • Maintains or increases coverage for families living with disabilities or socioeconomic disadvantages
  • Continue to allow children to remain on a parent's insurance until the age of 26, regardless of clinical diagnoses
  • Encourages appropriate education of clinical professionals and the establishment of evidence-based guidelines for care

Improving Quality of Life

The ability to work, live and play is critical to living a fulfilling life-- and a diagnosis of any sort should not change that.  For that reason, we also urge legislators to pass laws that:

  • Protects the rights of individuals living with these disorders in school and the workplace, including against discrimination
  • Enforces and expands accessibility standards
  • Encourage more research specific to families living with these disorders to better understand the social determinants that modulate long-term health outcomes, including the built environment and existing disparities/inequities that impact access to high-quality care

Key Pieces of Legislation

Advancing Research for Chronic Pain Act of 2023 (S.2922)

Level of Government: Federal / National

Introduced By: Sen. Casey (D-PA), Sen. Blackburn (R-TN), Sen. Kaine (D-VA), and Sen. Cramer (R-ND)

House Version? Yes:  Advancing Research for Chronic Pain Act of 2024 (H.R. 7164)

Bipartisan support

About: This bill aims to enhance research and data collection on chronic pain, but it must be passed by both the House and Senate in identical form and then signed by the President to become law.

More information: Click here for details and the most current status of this bill

Retaining Access and Restoring Exclusivity (RARE) Act (H.R. 7383)

Level of Government: Federal / National

Introduced By: Sen. Baldwin (D-WI) and Sen. Cassidy (R-LA)

Bipartisan support

About: This bill seeks to address issues raised by a 2021 court decision regarding orphan drug exclusivity. The act aims to ensure the FDA's longstanding interpretation of the Orphan Drug Act of 1983 is maintained. Specifically, it seeks to make sure that orphan drug exclusivity applies only to the same approved use or indication within a rare disease or condition, rather than to the entire disease or condition. This change is meant to prevent the misuse of orphan drug designations and to facilitate the approval of the same drug by different manufacturers for different patient populations[2]

More Info: Click here for details and the most current status of this bil

 

How Do I Advocate?

First, Figure Out Who You Should Contact

The best way to advocate is by developing a relationship with your elected officials and their legislative aides who work in the health care area.

But in order to develop a relationship, you need to know who your elected officials are and how to get in touch with them... The US is a big country, with a lot of different people working in government at various federal, state, and local levels.  Depending on the specific policy issue you are advocating for, the representative you contact will change.

If you know what policy issue is most important to you, you can find the best official to reach out to using the following resources.

For Federal/National-Level Policy Issues...

U.S. House of Representatives
You will only have 1 representative in Congress to represent your Congressional district in the House. Congressional districts are drawn up on maps by zip code.

Find your local representative and their contact information on the House website, along with a legislative schedule.

U.S. Senate
Every state in the USA has 2 Senators in Congress. You can find your state's Senators, information about what Committees they sit on/upcoming meetings, a legislative schedule, and more on the Senate website.

For State-Level Policy Issues...

State Senate & Other Legislatures
Once you get past the federal level, government structures start to look a little different based on your state. For example, New York state has an elected Assembly, while other states have different types of legislatures. Because of this, it can be hard to find a single list that will identify all your locally elected officials... especially because those officials can change with each passing election.

Luckily, there is a handy tool on USA.gov that helps you find and contact ALL federal, state and local level officials!

Enter your address information to find your officials: Find Your Elected Officials

For Local/Municipal-Level Policy Issues...

Local governmental structure is even more specific and it becomes even harder to provide a single list.  For example, your local government might be a city council, while someone in another part of the country may be governed by a township.

Thankfully, you can use the same USA.gov tool mentioned above to find your most local-level elected officials: Find Your Elected Officials

Once you know your specific policy issue and the person who you are contacting to advocate, you can start to plan your advocacy!

Next, Decide How to Get in Touch

There are a lot of different ways to contact your representatives.  The best way to advocate is to develop a relationship with your official and make yourself (and the cause you represent) more memorable.

The bigger an impact you leave, the more likely officials and their staff are to consider your opinion when the time comes to decide policy. Here are just some of the ways you can get in touch...

1. Write a Letter/Email
You can write a letter or email to your elected official.  This is especially important during a letter-writing campaign or when there is an advocacy alert.

You can use a template that we provide if you want somewhere to start.

2. Make a Call
You can also call your elected official's office and talk about your concerns (or read from a script if you're nervous).

For federal representatives, there is also a Congressional switchboard that can connect you to their staff if you don't call their office directly.

3. Schedule a Meeting
This is, by far, the most impactful way to advocate!  Contact the official's office and ask about setting up time to talk to the official or their staff about something that matters to their constituent (you!).

For federal- and state-level officials, they will often have more than one office-- one in the capitol (Washington, DC for federal reps and your state capitol for state reps) and another at a more local office.  You can request to meet officials at either office as long as they are scheduled to be there.  Some officials may even agree to virtual meetings that can be taken from anywhere!

In your meeting, you will tell your personal story and finish up with your policy ask. More on that in Plan Your Ask & Make it Happen! below...

4. Attend Their Events
Sometimes, elected officials host their own local, free events.  These may be campaign fundraisers, community benefit events, town halls, or others.

Attending these events close-to-home and introducing yourself is an easy way to stand out to your elected representative.

5. Participate in an Advocacy Day
Bobby Jones CSF hosts advocacy days in Washington, DC that are attended by patients and families living with Chiari malformation, syringomyelia and related disorders.

By attending an advocacy day in person, the stress of scheduling a meeting and crafting your ask is a little lower because it is often built into the day's events! Learn more about the unite@thehill here.

Plan Your Ask & Make it Happen!

Craft your Story & Meet Your Reps
First, check out this training from a previous unite@thehill given by unite4answers walk chair and board certified patient advocate, Julie Rauch. She goes over how to start writing your personal story and ask. She also describes what to do (and what not to do) in your meetings with elected officials.

Writing Your Story/Ask
It's important to craft a story and an ask that is emotional and passionate, but easy to understand! If you're writing a letter, email or phone script, be sure to write something that you would want to read/listen to.  Any written communication should be brief and to-the-point, but have the emotional impact that explains your "why".

It's also important to write a confident and passionate letter, while avoiding tones of anger. For example, by writing “Dear, _______” rather than “To Whom It May Concern,” you convey a warmth that the reader can feel and you begin a gracious dialogue rather than a harsh critique. Even the addition of a few “please” and “thank you’s” can go further than you’d think!

Finally, if you can make it personal— definitely go there!  There is nothing more persuasive to elected officials than hearing about a certain political issue from the point of view of someone who deals with the problem on a daily basis.

In summary:

  • Be brief, and to-the-point (no more than 1 to 1.5 pages)
  • Be passionate, but polite
  • Make it personal: tell your story

Once (or maybe even before) you feel ready: send that letter, make that call and meet with that staffer. You got this!

Still want a little extra help?

Templates
If you still feel like you need a little extra help, we do have templates and guidelines to help you write a compelling policy ask. Take a look, but remember that we really do recommend you make the templates your own. Generic looking form letters can be easily ignored on top of a whole bunch of generic advocacy letters.  We want your ask to be impactful and that can only be accomplished if you make it personal.

Upcoming Trainings & Workshops
We also hope to host a few virtual trainings and workshops. If you are interested, please let us know.

Any Questions?

If you have any questions about advocacy or want to get more involved in your state or local policy areas, contact Kaitlyn!

 

References
  1. Fitch B, Goldschmidt K, Cooper NF on behalf of The Congressional Management Foundation. Citizen-Centric Advocacy: The Untapped Power of Constituent Engagement. <https://www.congressfoundation.org/revitalizing-congress/communicating-with-congress/citizen-centric-advocacy-2017> Published 2017. Accessed June 20, 2024.
  2. Senators Baldwin and Cassidy Introduce Bipartisan Legislation to Preserve Access to Treatments for Rare Disease Patients. May 11, 2022. Available at: <https://www.baldwin.senate.gov/news/press-releases/senators-baldwin-and-cassidy-introduce-bipartisan-legislation-to-preserve-access-to-treatments-for-rare-disease-patients-> Accessed June 20, 2024.
Revised: 6/2024
References
  1. Fitch B, Goldschmidt K, Cooper NF on behalf of The Congressional Management Foundation. Citizen-Centric Advocacy: The Untapped Power of Constituent Engagement. <https://www.congressfoundation.org/revitalizing-congress/communicating-with-congress/citizen-centric-advocacy-2017> Published 2017. Accessed June 20, 2024.
  2. Senators Baldwin and Cassidy Introduce Bipartisan Legislation to Preserve Access to Treatments for Rare Disease Patients. May 11, 2022. Available at: <https://www.baldwin.senate.gov/news/press-releases/senators-baldwin-and-cassidy-introduce-bipartisan-legislation-to-preserve-access-to-treatments-for-rare-disease-patients-> Accessed June 20, 2024.
Revised: 6/2024