Advocating to State Governments

Why Do We Advocate to State Governments? 

Make Your Journey Matter: Tell Your Story!

In the US, state governments and the federal government have divided responsibility to oversee different laws. Healthcare laws are regulated by both federal government and each states’ government depending on the law. For example: Health Insurance companies that cover services in more than 1 state are regulated by the federal government, BUT health insurance companies that are local and only cover services in 1 state are regulated by that state’s government. Another example: The federal government sets the standard for what “essential health benefits” should be covered by insurance, but each state government creates its own “benchmark” insurance plan that fits within the standards.

The state government also oversees the following:

  • The distribution of Medicaid
  • Formularies of drugs covered under Medicaid or other state-sponsored insurance plans
  • The licensing of healthcare professionals
  • Rules and regulations of medical facilities, such as plasma donation centers
  • The specifics of handicap accessibility

Because of this close relationship between the federal government and state governments, our advocacy work has to cover both.  The good news is that the work we do at each level of government will be complimentary! Here is an example: If we work with the federal government to make a change to Medicare, we can point to that policy when we talk to our state government partners about what insurance plans they offer. Similarly, if we work at the state level to make a change to what our patients can access through a state-level insurance plan, we can then work with that state’s federal representatives to make a change at the federal level.


Medicaid is a state and federal program that provides health coverage to individuals and families within a certain range of the federal poverty line. About 17.8% of ensured Americans are enrolled in Medicaid (CRS).

  • Each state operates its own Medicaid program within federal guidelines
  • Medicaid is jointly funded by the federal government and by the states
  • States have flexibility in designing and administering their own program
    • Medicaid eligibility and benefits vary from state to state

To learn more about Medicaid in your state, go to www.medicaid/gov.

Rare Disease Advisory Councils (RDACs)

Rare Disease Advisory Councils (RDACs) support people with rare diseases by enabling them to educate the public and advocate to their state governments about the needs of the rare disease community. Since there are over 7,000 rare diseases, it is difficult for state governments to fully understand the needs of the various communities. RDACs can use their expertise to act as a voice for the patient community and work to identify and address any barriers an individual might face when obtaining necessary treatment and care for their disease.

RDAC members can be from various backgrounds related to the rare disease community, such as patients, caregivers, healthcare professionals, patient advocacy organizations, and state government officials.

Go to to see if your state has an RDAC and learn how you can get involved.

How to Advocate at the State Level: 

  1. Know your State Representatives
    • Find your Representatives by clicking here and entering your address on the right hand side
  2. Know your issue
    • Is there a law in your state that makes getting your IVIG approved by your insurance company difficult?
    • Are you struggling to access public places because of a lack of handicapped accessibility?
    • Work with Chelsey at the Foundation to figure out what is going on in your state and how we can advocate to your State Representatives to fix it!
  3. Know your story
    • Education is key! You can always spend time telling your State Representatives your GBS,CIDP, or variant story to educate them on what it is like to live with a rare disease and the treatments or lifestyle changes that help you live your best life.
    • Practice telling your story with these steps:
      • Sentence 1: I was diagnosed with __________ in ___(year)___   at the age of ____, a time of my life when I was _____________.
      • Sentence 2: Share a detail about the diagnosis process.
      • Sentence 3: Share a detail about the treatment you received and whether you still receive treatment or experience side-effects.
      • Sentence 4: Share how your life is impacted now as a result of your diagnosis.
      • Sentence 5: My story is unique, but there are many other people in this state with similar and struggles, so I hope that you will work with me and the GBS|CIDP Foundation International to make policy changes that will help others impacted with this or a similar disease.

Quick Tips!

  • Your State Representatives are your neighbors! They often live and work in your community and are passionate about how to improve your neighborhood.
  • You can connect with your State Representatives by:
    • Visiting them at their office at the State Capitol OR their local office in your neighborhood
    • Writing them an email
    • Attending a community event that they are holding, like a town hall
    • Participating in – or organizing! – a Hill Day at the State Capitol with the GBS|CIDP community in your state
  • Working with the media can help your story get the attention of your State Representatives!
    • Local media are often enthusiastic to highlight rare disease stories in the community, and this could be a great jumping off point for you to get a meeting with your State Representative
    • Check out Rob’s Media Tips to get started , and we can help you apply Rob’s Tips to your advocacy goals!

Fast Facts:

  • Each State has its own Constitution
  • Except for 1 state (Nebraska), each State has 2 houses in their legislature (sometimes called chambers)
  • All 50 states elect a Governor and their State Representatives
  • People often interact more closely with their state and local governments than their federal governments
  • Each State also has a State Supreme Court
  • In many smaller states, legislators serve part-time and receive only nominal compensation. They may meet just a few weeks or months of the year before returning to their full-time occupations

Types of State Policy

Senate and House Legislation

Similar to Congress, each state has their own legislature that researches, writes, and passes legislation. In order for a bill to become a law, the bill must pass both the House and Senate (except in the case that there is only one chamber).

Governor’s Executive Order

As with a presidential executive order, a governor’s executive order is a declaration of the law that does not require any action and cannot be overturned by the state legislature. Click here to view an executive order by Louisiana’s governor.

Governor’s Proclamation

A governor’s proclamation is an official declaration made to the public. The most common proclamation related to the rare disease community is for the commemoration of Rare Disease Day on the last day of February. Click here to view a proclamation from Alaska’s governor.

State Advocacy Sheets

Click on your state below to download a state advocacy sheet that includes information about relevant policy and information specific to your state!



























North Carolina

North Dakota


New Hampshire

New Jersey

New Mexico


New York





Rhode Island

South Carolina

South Dakota








West Virginia


State Advocacy News

November 3, 2022 – State Advocacy Works!

Thanks to the collective advocacy of many groups over many months, Massachusetts Governor Charlie Baker signed a bill into law that restricts the practice of Step Therapy. Step therapy is when patients are required to try using cheaper drugs in their recovery before “stepping up” to pricier meds. The new law requires insurance providers to approve or deny step therapy exemption requests within three business days, or 24 hours in an emergency, meaning faster access to the more expensive drugs. A law allowing speedier exemptions to the step therapy process is a win for patients who would otherwise have to go through a lengthy authorization or review process. Read more about the new law in Massachusetts here –

April 21, 2020 – Advocates Needed in California:

The GBS|CIDP Foundation International is calling for volunteers in California to reach out to Assembly Member Evan Low, the Chair of the Business and Professions Committee, to show support for Assembly Bill 2199. This bill in the California Government will help to improve the plasma collection process in the state and hopefully result in more plasma donation centers and more efficient plasma collection processes.

Here is how you can reach out to Assembly Member Low:

When you reach out to Assembly Member Low, here are some key points to help create a message to share:

  • We are asking Assembly Member Low to support Assembly Bill 2199 because the bill will improve plasma donation in California.
  • Share why plasma is important to you:
    • Do you or a loved one use a plasma product to treat CIDP? Was IVIG used to treat your GBS or a loved one’s? Share your story, briefly!
  • California is a large state, but has proportionately less plasma donation centers than other large states. Assembly Bill 2199 will improve collection in the state while still ensuring that plasma donors and eventual plasma users are safe.
  • Be sure to thank Assembly Member Low for considering this request.

If you have any questions about how to get started, send a message to Chelsey at