By Kaitlyn Potts

I owe most of my accomplishments to the UNC Department of Neurology, specifically, to the now-retired Robert S. Greenwood, who was a neurologist for decades. When I was around 16 years old, when I finally got a referral for neurology, he managed to figure out what my condition was from just one appointment. He read through my symptom log, actually listened to me when I spoke, took my autism diagnoses into account, and immediately prescribed me the Mito Cocktail regime.

A year later, due to the success of the treatment plan given to those with mitochondrial disorders, I was diagnosed with Mitochondrial Cytopathy. He is why I finally figured out what rare illness I had and how to manage it and what started the domino effect of long-term care I needed because of my disease. One of North Carolina’s best doctors is why I got the healthcare I deserve. 

This year, the Right to Try Act was expanded in North Carolina. On July 8, House Bill 98, known as the Goldwater Institute’s Right to Try Individualized Treatments Act, was signed by Gov. Roy Cooper. This is also known as Right to Try 2.0. North Carolina is one of six states with this law initiated by the Goldwater Institute, joined by Louisiana, Maryland, Mississippi, Arizona and Maryland.

House Bill 98 was unanimously approved by both chambers of the North Carolina General Assembly, championed primarily by state Sen. Benton Sawrey and state Rep. Allen Chesser. The purpose of this bill is to ensure that patients with severely debilitating or terminal illnesses can participate in the latest paradigm shift in medicine, individualized treatments tailor-made for each patient based on their unique genetic information. Because of this bill, North Carolinians now have the option to seek out the most promising and innovative treatments within the Tar Heel State, rather than traveling elsewhere or relying solely on FDA-approved treatments. 

“Indeed, 95 percent of rare diseases have no FDA-approved treatment,” says Brian Norman of the Gold Water Institute. “The federal government’s decades old clinical trial evaluation system is designed for treatments meant for large patient populations — not an individual patient. As a result, individualized treatments are still subject to the same ‘one-size-fits-all’ clinical trial process of drugs as intended for thousands upon thousands of patients, which delays or denies access to potentially lifesaving treatments for millions of rare-disease patients.” 

This bill is personal to me, as I deal with a rare disorder myself, along with many of my peers. If anything goes south, I can seek experimental treatment that could save my life and not have to deal with any authoritative restrictions of the FDA.  

Every year the Energy for Life Walk-A-Thon takes place in North Carolina, under the United Mitochondrial Disease Foundation. A friend of mine, Meredith Hobbs, who also has Mitochondrial Disease, was on the committee for this event, which took place in October earlier this year. So I had to go, for sure. This event took place in Charlotte, and it was wonderful to see people fundraising for the rare disease we deal with. According to their site, the walk-a-thon raised $57,000, which is astonishing.  

I met Meredith via Youth Lead NC, an organization that “envisions a society in which young individuals with disabilities are empowered to take on leadership roles within their communities and successfully achieve their desired outcomes in education, employment and independent living.”

Each year, they have a Youth Leadership Forum for young adults like me. Because of this organization, I was able to get access to various resources available regarding rare diseases in the state of North Carolina and met someone with the same condition for the first time. Without YLF, I never would’ve met Meredith or the North Carolina Mito community (we call ourselves “Mito Warriors” because of the strength and courage it takes to fight the debilitating condition). And I never would’ve learned about any opportunities for disabled young adults. 

Overall, it is without a doubt that North Carolina and its people have put in great effort towards rare-disease research and treatment options. The state provides above-average care at our hospitals and specialty clinics and is also a place where advocacy is encouraged on a governmental and societal level. 

Kaitlyn Potts was an intern at the John Locke Foundation and is a student at North Carolina State University.