'Collectively, we make a big community': 2 Portage residents serve on rare disease council

When she was working as an advocate on behalf of parents of children with serious illness, Randi Clites said the Department of Medicaid often called her in to seek her opinion on its actions. But the Ravenna resident became frustrated that her input was always sought after a decision was made.

"Why aren't they getting input before they make a decision?" Clites wondered.

After Clites became a state representative, she worked to pass legislation that created the Ohio Rare Disease Advisory Council and was one of the first Ohioans appointed to the panel.

Recently, Kent Health Commissioner Joan Seidel joined her on the council. The Portage County residents are among 31 Ohioans who serve on the panel.

Clites, a former state representative, served as chair last year, and Seidel recently was appointed to the panel. Both were among 25 people appointed by Gov. Mike DeWine. The Ohio Legislature named six more members.

The council seeks to coordinate statewide efforts regarding the 7,000 to 10,000 rare diseases that have been identified.

Clites is in her second term on the council, and Seidel is in her first.

Clites said it is unusual that Portage County is home to two members of the panel.

"I love that Portage County has such great leaders," she said. "I think it's one of the great things about our county."

Clites driven to fight rare diseases

Clites served as a state representative from 2018 to 2020 and has said she ran for office to help families. Her son, Colton, now 21, has hemophilia, a rare genetic bleeding disorder, is a leukemia survivor and had brain surgery as a child.

She said she felt there was a need to be a voice "for those of us who have rare condition or have loved ones who do."

Clites serves as a representative of a non-profit. She works for the Little Hercules Foundation as its rare disease policy director and also works part-time for the hemophilia foundation.

Living with a rare condition

Colton was two weeks old when he was diagnosed with hemophilia. His leukemia diagnosis, which came 15 months later, is also classified as a rare condition.

The leukemia is behind him (he was considered cured many years ago) but he still lives with hemophilia. He said the condition doesn't have a big affect on him day to day, but it's something he's always aware of.

If he were an athlete, he said, he'd probably be in greater danger. But he's never had much of an interest in playing sports.

"I've lived with it for so long, I know my limits," he said.

Colton, who has always been a car enthusiast, works at Charles Auto Family in Garrettsville, where he's worked his way up to car salesman.

"We are very fortunate of the rare diseases that Colton has had available treatment in his whole life," Clites said. "Only about 5% of rare families have that, so Colton is living his best adult life."

She said that motivated her to advocate for all families to provide access for their children.

"I am so grateful that this is a way for our family can lend a voice for access to all," she said.

The rare disease council is created

Toward the end of her term, DeWine signed a bill she sponsored into law, which created the council.

"The Ohio Rare Disease Advisory Council will provide the expertise that lawmakers need to solve the issues facing those living with a rare disease, creating better health care policy in the state, and delivering better access to government to those living with a rare disease,” Clites said at the time.

The panel met for the first time in May 2022 and unanimously appointed Clites as chair of the group. Clites recently issued a report to DeWine and statehouse leadership, which outlines the group's efforts.

The council, the report states, formed three subgroups — research, diagnosis and treatment.

The council for the 135th general assembly met earlier this month, and Clites was appointed co-chair of the panel, along with Dr. Murugu Manickam, chief of genetic and genomic medicine and clinical professor at Nationwide Children's Hospital in Columbus.

Clites said the group's subcommittees will detail:

• Coordinate statewide efforts to study the incidence of rare diseases in Ohio.

• Make findings and recommendations regarding rare diseases.

• Promote collaboration among rare disease organizations, clinicians, academic research institutions and the General Assembly to better understand the incidence of rare disease in Ohio.

Seidel said her experience, both as a health commissioner and as a nurse, give her insight she can share on the rare disease council. The health commissioner she succeeds on the panel also was a nurse.

"When I would care for patients living with cystic fibrosis, hemophilia, sickle cell, and other rare diseases they shared how it impacted their life," she said. "I could see how it affected them physically, but for some patients there was an emotional and psychological component as well. Tedious or painful treatments, multiple doctor visits or hospitalizations, feeling a decrease control over their life, in some cases, a shortened life expectancy."

She said she is looking forward to providing insight and hopes the things she learns will contribute to the health of the community

Many people have rare diseases

In order for a condition to be classified as rare, it must affect fewer than 200,000 people nationwide. An estimated 7,000 to 10,000 conditions are classified as rare. The National Organization on Rare Disorders estimates that collectively, those disorders affect more than 30 million Americans.

Rare conditions include cystic fibrosis, childhood cancers and hemophilia. An estimated 30,000 Americans have hemophilia, 2,500 of whom live in Ohio.

"Although there are not a lot of people affected with each rare condition, collectively we make a big community," Clites said.

Who serves on the panel?

The panel consists of 31 members, 25 appointed by DeWine and another six appointed by the state legislature.

The governor's appointees must include:

• A medical researcher studying rare diseases.

• A representative of an academic research institution studying rare diseases.

• A doctor with experience researching, diagnosing and treating rare diseases.

• A nurse with experience treating patients with rare conditions.

• A genetic counselor practicing at a hospital.

• Three members of the public who have a rare disease or represent someone who does.

• Arepresentative of a national organization treating patients with rare conditions.

• A representative of a rare disease foundation in Ohio.

• Two representatives of the Ohio Department of Health, including one who represents children with medical handicaps.

• Representatives of the department of Medicaid, the bureau of insurance, the commission on minority health, the Ohio hospital association, Ohio health insurers, bioOhio, the association of Ohio health commissioners and the Pharmaceutical Research and Manufacturers of America.

The legislative appointees come from within the Ohio House of Representatives.

Reporter Diane Smith can be reached at 330-298-1139 or dsmith@recordpub.com.

This article originally appeared on Record-Courier: 2 Portage County residents serve on statewide rare disease council