2014-05-01 / Front Page

Boy to Congress: Children get arthritis, too

The Donnelly family — Candice, John, John III and Ryan, left to right — stand in front of the Capitol building during their time at the Arthritis Foundation’s Advocacy Summit. The Donnelly family — Candice, John, John III and Ryan, left to right — stand in front of the Capitol building during their time at the Arthritis Foundation’s Advocacy Summit. I n an effort to get the word out that children also get arthritis, 14-year-old township resident Ryan Donnelly, who has juvenile rheumatoid arthritis, recently traveled to Washington, D.C., with his family to advocate for others like him.

“I’ve had arthritis for as long as I can remember,” Ryan said. “By the time I was 9, I couldn’t open a water bottle, button or zipper my clothes, or at times even hold a pencil. I want to tell my story so that Congress knows the true impact of this disease. Living with pain every day of elementary school was awful, and without my mom and family, I never would have gotten through it.”

The Donnellys were among approximately 300 key arthritis advocates from across the country who took part in the Arthritis Foundation’s 16th annual Advocacy Summit. The purpose of the summit is to educate members of Congress about the need for more help for people with arthritis.

While in D.C., Ryan, a freshman at Edison High School, told his story of living with juvenile rheumatoid arthritis since he was 5 years old. He met with staffers for Sen. Corey Booker (D-NJ) and Rep. Frank Pallone (D-6).

Advocates urged Congress to support legislation that will make medications more affordable for patients with arthritis; reauthorize a pediatric sub-specialty loan repayment program to address the critical shortage of pediatric rheumatologists in the United States; and include post-traumatic osteoarthritis and rheumatoid arthritis in the Department of Defense Research Program.

This was the second year that Ryan and his brother John, 17, attended the summit with their parents, John III and Candice, who has osteoarthritis that resulted in a total knee replacement.

“I’m going to help push to get this done,” Candice said. “To just talk about it isn’t going to get anything unless we actually do something. This is our way of participating and trying to get a cure for arthritis.”

The summit wasn’t all work, however.

“It was a lot of fun,” Ryan said. “I made a lot of friends and went to Congress and stuff. It was cool to see how Congress works. I met different people from lots of cultures and states. It was a good learning experience.”

Ryan said he spoke in support of the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act (H.R. 1827), which would enable more doctors to become pediatric rheumatologists.

“I asked them to give doctors loans for when they go to medical school,” Ryan said.

Candice noted that when they were seeking a diagnosis for Ryan’s initial symptoms, which included falling down a lot, painful feet and swollen knees at age 5, they had to travel far from their local area to find a pediatric rheumatologist.

“We had to go up to North Jersey,” Candice said. “Getting an appointment was hard — there was a three- to four-month wait, and traveling was hard, especially in the winter.” Ryan is now doing well under the care of Dr. L. Nandini Moorthy at Robert Wood Johnson University Medical Center.

At the advocacy summit, Ryan expressed concern for those who cannot afford their medications, and spoke in support of the Patients’ Access to Treatment Act, which would help eliminate specialty tiers in commercial health insurance plans that can cost patients hundreds of dollars per month for a single medication.

“What’s happening is kids and adults are going without medication because the specialty tier drugs, like the biologics, are so expensive that the people cannot afford it,” Candice said. “Even with insurance, people are paying a couple thousand dollars a month.”

According to the Arthritis Foundation, “a study by Avalere Health determined that if [the act is] enacted, insurance premiums would increase only $3 annually.”

“And we’re not just talking about arthritis medication; we’re talking about medications for all people,” Candice said. “We were advocating for it so they would pass this act … so that instead of paying like $1,000 a month for a co-pay, they would only pay $50 or less.”

Candice said when she was speaking to others at the summit, she found that it was somewhat common for people to have to make a choice to go without medication for themselves to keep a roof over their family’s head.

“One other item that we were advocating for was for continued funding for arthritis research at the Congressionally Directed Medical Research Program at the Division of Defense,” Candice said. “We want them to keep the words ‘post-traumatic osteoarthritis’ and ‘rheumatoid arthritis’ in the wording when they do their funding.”

According to the Arthritis Foundation, “post-traumatic osteoarthritis caused by battlefield injuries is now the primary source of disability for warriors. Veterans have twice the rate of osteoarthritis as their civilian counterparts. Rheumatoid arthritis strikes at the peak of one’s career [mid-tolate 30s and 40s] and often leads to early retirement and disability.”

“I would love to see a cure so that maybe my grandchildren don’t have to have any problems,” Candice said. “I saw what Ryan went through when he was little, and it broke my heart. A lot of people think arthritis is an old person’s disease, and it’s not.”

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