On January 21, 2021, the Rare Disease Legislative Advocates (RDLA) hosted an online webinar that focused specifically on the subject of advocating for rare disease health policy at the state level. Though working for policy at the federal level can feel more important and wide-ranging, state advocacy can often have implications that are no less substantial.

The webinar was emceed by Swapna Kakani, who is the State Advocacy Fellow at the EveryLife Foundation for Rare Diseases. Swapna introduced the program with an overview that explained the value of state level advocacy.

Why Advocacy at the State Level is Essential

A fact that is not widely understood by the general public is that a lot of important healthcare related laws and decisions are determined at the state level. Unfortunately, there can be stark disparities in the care and overall experience of a rare disease patient depending on the state in which they live. In one state, for example, specialized care often needed by patients, such as medical nutrition, may be covered under insurance by law in one state but may not receive coverage in another. Some states have opted to expand Medicaid eligibility whiles others have not. In addition, the genetic disorders that are searched for under newborn screenings can vary by state to state, leading to huge differences in the timing of diagnosis.

With these realities in mind, it becomes much clearer just how much of a game changer strong rare disease advocacy at the state level can be. Advocacy at the state level can look like rare disease-focused caucuses in the state legislature, which often resembles the federal level caucus and is typically bipartisan and bicameral in organization. Another example that has been gaining steam are state advisory councils. These councils, which have been implemented through legislation, are present in 15 states and in some instances include lawmakers.

Rare Disease State Advocacy in Practice

The state advocacy structures are valuable in increasing awareness of rare disease resources. There are some other organizations around rare diseases that are state based that do not fit the definitions above. One example is CAL RARE, or the California Action Link for Rare Diseases. The founder of CAL RARE is Angela Ramirez Holmes, who also spoke during the webinar.

Angela is the mother of a rare disease patient, and she describes CAL RARE as a nonprofit membership coalition that is focused on improving the lives of patients and spreading awareness. The organization was first established in 2017. CAL RARE has been instrumental in getting patients to share their crucial experiences and knowledge with lawmakers first hand in the state. They have also successfully established a rare disease caucus (leading to the passage of new laws to help rare patients) and helped build community through providing resources such as informational webinars.

Angela highlights several key steps that can help state advocates get a rare disease caucus going in their state:

• Research possible allies in the legislature
• Find out if there are other issue-based caucuses
  • Are there health-focused ones?
• Learn the structure of the law-making body

Mac McCutcheon, Speaker of the House in the Alabama legislature, was also on the webinar. He gave several important tips for reaching out to lawmakers such as:

• Contact the ones the represent your district first, as they specifically represent YOU and have a greater responsibility to listen to your concerns.
• Find those that have previously expressed interest in healthcare or rare disease and contact them as well
• Patience and persistence can pay off; lawmakers are busy and may not be able to respond immediately

Ready to learn more about state advocacy? Check out these tips sheets from the RDLA:

Creating a Rare Disease State Legislative Caucus

Comparing State Caucuses and Advisory Councils

Starting a State Based Organization

RDLA is also in the process of developing a state advocacy hub. With these resources at your fingertips, you can have the knowledge necessary to get started with rare disease state advocacy.