Rare Disease Legislative Advocacy
By Jim Kuhn, FSR Patient Advocate, FSR Patient Navigator, and FSR Patient Advisory Committee Member

In February 2018, I did my first ever grass-roots lobbying, when my wife and I met with legislative aides of the Congressional Senators from Ohio – Sen. Rob Portman and Sen. Sherrod Brown – during Rare Disease Week. This was a result of a coordinated effort, with training by the Foundation of Sarcoidosis Research – where I am a Patient Advocate (and sarcoidosis patient) – and The Everylife Foundation. I was really impressed at the ‘power’ a ‘regular’ citizen had to influence and inform our legislators on what is important to us!

When I returned home, I wondered how I could keep up the momentum in my own state. The Everylife Foundation directed me to their Rare Across America program, while other contacts made during our Washington visits introduced us to NORD – National Organization for Rare Diseases. NORD’S Rare Action Network serves to connect and empower a unified network of individuals and organizations with tools, training and resources to become effective advocates for rare diseases through national and state-based initiatives across the United States. The Everylife Foundation’s Rare Across American program helps to prepare advocates for meeting local legislators, provides legislative resource materials, and hosts pre-meeting training webinars to help advocates work toward meaningful change in their community.

In 2020, we returned to, once again, seek their support. We were successful in getting our leaders to ‘sign on’ to increased funding for NIH. We barely made it out of Washington DC after Rare Disease week before the country shut down, due to the pandemic. However, COVID19 will not stop us in 2021. The Rare Across America has scheduled an upcoming call with my Ohio Senator’s (Brown & Portman) staff on March 3rd to discuss the importance of raising awareness on rare diseases, major barriers to care experienced by sarc warriors including denials, request for evidence that other treatments are not working before prescribing medicines before insurance companies agree to pay (known as step therapy), and the need to address high out of pocket costs of medications.

My grass-roots lobbying work has given me the tools, information, and confidence to also approach my State of Ohio congressional leaders for help in the rare disease cause. I have worked closely with my local Ohio Representative, Scott Lipps, who is now Chair of the House Health Committee. He has introduced a Bill to make April permanently Sarcoidosis Awareness Month in the State of Ohio, so we don’t have to ask every year. With COVID19, getting this bill to the governor’s desk may be a bit more difficult but the staffers Representative Lipps assured me they will do all they can to get this bill through this year.

Right at the end of 2020, the Ohio House passed HB412 calling for the creation of a Rare Disease Advisory Council (RDAC). It will be formed under the Department of Health, with required annual reporting to the Legislature on a number of Rare items.  This is a big win for rare disease because it will bring together patients, caretakers, healthcare providers, researchers, physicians, lawmakers, and state officials to begin addressing many of the issues facing Ohioans living with rare diseases. The hope is that the RDAC will create the expertise needed to create better healthcare policy in Ohio for those living with a rare disease.

If you are interested in learning how to become a legislative advocate for those living with sarcoidosis, please click here to apply to be an FSR’s Patient Advocate program.  FSR will be conducting a training for FSR’s Patient Advocates in late March.  This training will include tips for legislative advocacy.

Please also check out these programs from our partner organization to learn more about advocacy in your home state.

Together we can bring about significant change.