Lorrie Pickrell and her daughter Makailya, age 14 years, of Ellsinore, Mo., clock more than three hours each way to get to a pediatric rheumatologist in St. Louis. If Makailya sits too long, her legs and hips hurt.
“We usually stop about halfway for her to get out….It’s an all-day thing,” says Lorrie.
A straight-A student, Makailya dislikes missing school for doctor appointments. She was diagnosed with juvenile arthritis at age seven years, but had complications since she was four years old.
Both families joined the AF’s Advocacy Summit in Washington, D.C., in April to rally congressional support for the Pediatric Subspecialty Loan Repayment Program. The aim is to give more children greater access to pediatric rheumatologists by attracting more medical students to the subspecialty. Congress approved the program as part of the healthcare reform bill, but has not yet appropriated funds for it, says Amy Melnick, vice president of advocacy for the AF.
This is the second year that Makailya attended the AF summit to speak to congressional leaders and meet other children her age with the same disease. She says it is important to tell legislators that more pediatric rheumatologists are needed so that children like her don’t go undiagnosed.
“The day that they finally diagnosed me, I couldn’t walk,” says Makailya. “If they had got me in sooner, I probably wouldn’t be as bad as I am.”
