Increasing Access to Pediatric Rheumatologists
My family recently traveled to Washington D.C. to attend the 2014 Arthritis Foundation Advocacy Summit. My primary role at the summit was to ask my Members of Congress to support H.R. 460: The Patients Access to Treatments Act, which would make vital biological medications more accessible and affordable for those of us living with RA and other diseases. This is an issue that has affected me personally, so I shared my story with the offices of my Members of Congress and asked for their support.
However, there was another important advocacy goal of this year’s summit: H.R. 1827: The Pediatric Subspecialty and Mental Health Workforce Reauthorization Act of 2013. While the title of the Act certainly sounds like a mouthful, in reality the result of the law would be pretty simple. If passed, a student loan repayment program would be created for medical students who chose to continue their study in order to practice in the subspecialty of pediatric rheumatology. Pediatric rheumatologists are doctors who are specially trained to take care of children growing up with arthritis.
Why is this bill so important? Because there are 300,000 kids in the United States growing up with arthritis – but only 250 board-certified pediatric rheumatologists to care for all of them. In fact, there are eleven states in the United States that have zero pediatric rheumatologists (Alaska, Idaho, Nevada, New Hampshire, North Dakota, Maine, Montana, Oklahoma, South Dakota, West Virginia, and Wyoming). Children living in these states must travel out of state to receive care from a pediatric rheumatologist. If out of state travel is not possible for their families, these children must make do with seeing pediatricians, who are generally not adequately trained to care for children with juvenile arthritis, or they must visit adult rheumatologists, who are not trained to deal with pediatric issues, such as stunted bone growth.
And even though there are thirty-nine states with at least one practicing pediatric rheumatologist, that doesn’t mean there is enough care to go around. For example, in my home state of Colorado there are nearly 4,600 kids growing up with arthritis – but there are only two pediatric rheumatologists. One of these doctors is a wonderful man who I know personally. He even runs a summer camp for kids with JA so they can learn about their conditions and meet other kids in similar situations. However, this doctor is likely to retire in the relatively near future, leaving a lot of kids in my home state without access to the care they need to grow and thrive.
Unfortunately, most medical students do not become specialists in the field of pediatric rheumatology. For one thing, it takes several extra years of study after already taking the time to specialize in pediatrics. And, for doctors that do continue past pediatrics to pediatric rheumatology, the sad truth is that they often get paid less than ordinary pediatricians. Which means that there is no incentive to incur additional student debt to continue on to the pediatric rheumatology specialty. H.R. 1827 is an attempt to incentive medical students to continue their study in order to fill this much needed gap in care for our kids with arthritis.
Here’s How You Can Help!
If this story sounds familiar to you or to someone you know and love, you can help!! Especially if you live in one of the states with zero pediatric rheumatologists!! Call or write or visit your members of Congress and ask them to support H.R. 1827: The Pediatric Subspecialty and Mental Health Workforce Reauthorization Act of 2013. Share your personal story so your representative can learn how this issue affects his or her constituents.
If you aren’t sure who your members of Congress are:
- Visit Senate.gov to find your two Senators by looking up the state you live in
- Visit House.gov and input your ZIP code to find the Representative for the district you live in.
Your representatives should care about what you have to say – after all you are responsible for electing them! And they should especially care about your concerns this year because it is an election year! So tell them what is important to you! And if you find out that your representative already supports H.R. 1827 be sure to thank them!
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?