Advocacy in West Virginia

Can you imagine driving nearly four hours every two weeks to get your child the medical care she needs? That is what one West Virginia mother, Lesli Wright, did for two years after her daughter, Ayla, was diagnosed with Juvenile Arthritis (JA) at 18 months. Without a pediatric rheumatologist in the state, driving 200 miles to Cincinnati Children’s Hospital was the family’s only option.  Even now that Ayla is in medical remission the family still struggles to juggle schedules and responsibilities for her and siblings, Brennan, 5, and Kaleb, 19, related to making the trip three to four time annually.  (Click here to read more about remission.)

West Virginia is one of 11 states without a single board-certified, practicing pediatric rheumatologist. There are seven other states with only one. “It’s the kids who suffer,” Wright said when asked about what it’s like to live in a state without a specialist.

“It takes longer to get a proper diagnosis and you don’t have the resources locally to figure out what the best medical options are for your child. You are on your own,” she adds.

“We were actually lucky in getting a diagnosis within four months, because both my husband and I work in the medical field,” Wright says. She’s a nurse and he’s a physician assistant.

“We used resources that most wouldn’t have access to. I couldn’t imagine what someone else would have gone through.”

In order to help alleviate the shortage of pediatric rheumatologists nationwide, the Arthritis Foundation is urging Congress to fund the Pediatric Subspecialty Loan Repayment Program in 2014. The program was authorized by the Affordable Care Act (ACA) in March 2010. The program is designed to incentivize training and practice in pediatric medical subspecialties, like pediatric rheumatology, in underserved areas across the United States. It would offer up to $35,000 in loan forgiveness for each year of service for a maximum of three years.

Sign up to be an Arthritis Foundation e-advocate at www.arthritis.org and urge your member of Congress to support the Pediatric Subspecialty Loan Repayment Program.

Wright shares more of her family’s story in her blog One Day at a Time found at http://lesli-onedayatatime.blogspot.com/.

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