Andy Moy started showing signs of psoriatic arthritis when he was 2 years old. But he didn’t get the right diagnosis until he was 5, and he didn’t get the right treatment until he was 6.
Andy and his family don’t want other kids with arthritis to experience the pain and frustration that comes from that kind of delay. It’s a problem that needs to be solved, they say.
To fix it, they’re going right to the top—the U.S. government.
On Oct. 6, Andy, now a senior in high school, will serve as a panelist at a Congressional briefing regarding his experience growing up with psoriatic arthritis.
The briefing, titled America’s Pediatric Arthritis Specialist Shortage: What it Means for Kids, Cost and Care, is organized by the American College of Rheumatology, the Arthritis Foundation and the National Psoriasis Foundation in conjunction with the Congressional Arthritis Caucus.
It will draw attention to the lack of arthritis care for children and urge Congress to support potential policy solutions, including H.R. 1859, the Ensuring Children’s Access to Specialty Care Act, which would make pediatric rheumatologists eligible for the National Health Service Corps (NHSC).
The NHSC provides scholarship and loan repayment to health care providers in exchange for services in rural and underserved areas.
This bill, which has been introduced in the House of Representatives, would help ensure that children in areas that currently have no pediatric rheumatologists would have access to providers best suited to meet their needs.
Early signs of psoriatic arthritis
After all, when a mother sees her 2-year-old child in pain, she deserves some answers. Looking back, that was the first clue that Andy might have a serious condition, said his mother, Jaime Moy, who also has psoriasis and psoriatic arthritis.
“We would take him to the zoo, and we would carry him on our shoulders,” said Jaime, recalling a family outing with her husband and Andy. “But when I put him down, he would scream in pain. His knees would buckle and he would fall to the ground. It was obviously pain.”
When Andy was 4, he was diagnosed with psoriasis—after his pediatrician mistakenly told him he had ringworm. While he and his family dealt with that, the psoriatic arthritis symptoms continued to creep up. After his kindergarten teacher told Jaime that Andy was falling down a lot, they knew they had to get Andy in to see a rheumatologist.
But it was a case of hurry up and wait. The pediatric rheumatologist—an hour’s drive away from their home in Michigan—had a six-month waiting list.
When it finally happened, the appointment wasn’t all that helpful anyway. They were told to give Andy an over-the-counter anti-inflammatory. Finally, a year later, Andy saw a different rheumatologist who put him on a better treatment.
Waiting so long for stronger treatment did permanent damage. Andy has deformities in his hands, his hip is fused where it shouldn’t be, and he’s never been able to go into remission, Jaime said.
Growing up, he sometimes felt left out of things, Andy recalled.
“Thinking back to elementary and middle school, we’d go outside, we’d run around and stuff, but I was always slower than the rest of my friends, probably because of my arthritis.”
He still has trouble getting out of bed, and sometimes has to ask his mom or dad to help him out. He has to miss school for doctor’s appointments and even had to miss out on a robotics team competition, one of his favorite activities.
Speaking out on behalf of kids with arthritis
But Andy doesn’t let things like that keep him from enjoying his senior year. He’s got a great group of friends—even though he had to weed out some classmates who judged him unfairly because of his arthritis, he said.
He keeps busy with schoolwork and activities like robotics, yearbook and a club that helps international exchange students get used to life in Michigan.
Now he’s getting ready to travel to Washington, D.C., for the briefing. He’s hoping that hearing his story will prompt lawmakers to make important changes that will make it easier for kids with arthritis to get the best health care possible.
If Congress passes the bill, it could provide a policy solution to address access-to-care challenges and a lack of funding for pediatric specialists.
“What I’m hoping is that Congress increases funding that will directly or indirectly increase the number of pediatric rheumatologists across the country,” he said.
This will mean that more doctors will be caring for patients and conducting research—research that could lead to better treatments.
Andy’s nervous to testify before Congress, but he’s prepared.
“This could have a huge outcome if it goes well,” he said.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.