Plainview Woman Advocates For Arthritis Sufferers

Plainview's Brianna Bollettieri traveled to Washington this week to urge Congress to support people with all forms of arthritis.

Miss Bollettieri, a college freshman who has suffered with juvenile arthritis since age 12, joined nearly 350 other Arthritis Foundation advocates this week on Capitol Hill for the annual Arthritis Foundation Advocacy Summit. 

The group is calling for policies to ensure more research, better treatments and greater access to care. The Plainview resident shared her story of the daily struggle of living with arthritis, the nation’s leading cause of disability. 

Advocates say they need Congress to 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. 

“I have been playing soccer and basketball since I was 5 years old and am now the goalie on my college soccer team, but it’s been quite a journey to get me here,” Bollettieri said.  “After a basketball game when I was 12, my knee and toes were so swollen I couldn’t even walk to the car—even though I wasn’t injured and played a great game. Thankfully, my orthopedist recognized that something serious was wrong and sent me to a pediatric rheumatologist.”

While patients now have access to the benefits of research through the discovery and development of drugs like biologics, excessive cost-sharing makes it extremely difficult for many to afford the medication they need. Bollettieri’s insurance company denied her coverage of biologic infusions because she was five months short of the minimum age requirement, leaving her family with an $88,000 bill for just four treatments.

After receiving help from local senators and legislators the family prevailed. Bollettieri is among the 50 million Americans or one of the 300,000 children suffering from arthritis. 

“I am very lucky to have a great doctor and access to strong medications that help me lead an active life," she said. "But many other people with arthritis simply can’t afford their medication and don’t even have access to pediatric rheumatologists. I don’t think I would be goalie of my soccer team now if I hadn’t been lucky enough to get the medication and treatment I needed when I was younger.”

Striking one in every five adults, arthritis is a serious, sometimes life-threatening disease and also the nation’s leading cause of disability.  The Arthritis Foundation (www.arthritis.org) is committed to reducing the impact of arthritis, which can severely damage joints and rob people of their ability to live normal lives, including children.

“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,” says Amy Melnick, vice president of advocacy for the Arthritis Foundation.