Hopatcong Teen Takes on Capitol Hill For Arthritis Support
Mary Rose Purdue asked Congress for more research, better access to care.
For many suffering from juvenile arthritis, it is enough to make it through the day.
For Hopatcong’s Mary Rose Purdue that wasn’t enough.
The 17-year-old traveled to Washington, D.C. earlier this month to share her story of the daily struggle of living with arthritis, the nation’s leading cause of disability.
Purdue has lived with juvenile arthritis for eight years and joined nearly 350 other Arthritis Foundation advocates on Capitol Hill for the annual Arthritis Foundation Advocacy Summit. The summit featured advocates from all 50 states and the District of Columbia to meet with members of Congress to educate them that more needs to be done for people with arthritis.
“People are confused when I tell them I have arthritis because I am so active and look healthy,” said Purdue. “I suffered for years from pain in my hands, unable to even open a water bottle and doctors simply told me to rest my hands when they hurt.”
Purdue, who is a varsity cheerleader and student council class vice president, said that it was finding the right doctor that helped change her life.
“Nobody understood what I was talking about until my parents finally found a pediatric rheumatologist when I was twelve and that changed my life,” Purdue said.
Purdue and the other advocates urged Congress to support legislation that will make medications more affordable for patients with arthritis; fund a pediatric subspecialty loan repayment program to address the critical shortage of pediatric rheumatologists in the U.S.; and include 'post traumatic osteoarthritis’ and ‘rheumatoid arthritis’ in the Department of Defense research program.
Currently there are less than 250 practicing, board-certified pediatric rheumatologists in the United States. There are 11 states without a single board-certified, practicing pediatric rheumatologist and 7 states with just one. A delay in diagnosis and treatment for children with juvenile arthritis can lead to permanent disability and deformity.
“We are advocating for increased access to pediatric rheumatologists so that other children with juvenile arthritis do not have to go through what I did,” Purdue said.
According to vice president of advocacy for the Arthritis Foundation Amy Melnick, many people are finding themselves facing a huge financial burden simply to get the drugs their doctors have prescribed because of discriminatory insurance practices and others are being forced to travel hundreds of miles just to see the closest doctor.
“These are reasons why the Arthritis Foundation is so committed to educating our lawmakers on the devastating toll arthritis takes on our nation’s health and economy,” Melnick said.
As for Purdue, the Hopatcong resident has no plan to stop pushing progress.
“I plan to become a pediatric rheumatologist myself so that I can make sure other children don’t have to be frustrated with doctors who don’t understand the disease,” Purdue said.