By Fran Maye
A 5-year-old Kennett Square girl will be traveling to Washington D.C. next week to ask Congress to support people with arthritis through policies that will ensure better treatment, more research and greater access to care.
Eliza Netzorg, who has suffered with juvenile arthritis for nearly four years, will join nearly 350 other Arthritis Foundation advocates March 4-6 on Capitol Hill for the annual Arthritis Foundation Advocacy Summit.
Eliza was diagnosed by a medical team at DuPont Hospital with juvenile arthritis on her second birthday.
“She couldn’t walk, was in a lot of pain and fatigued easy,” said Erica Netzorg, Eliza’s mother. “Sleeping was difficult and often she was in pain.”
Today, Eliza is mostly pain free but must rely on medication.
“They give me shots on each arm every Thursday,” Eliza said. “I don’t cry.”
Eliza will urge Congress to support legislation that will made 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’m going to Capitol Hill to ask them to help so no other kids get this disease,” Eliza said. “I am strong. I do yoga. I have to take care of my body.”
Like many people afflicted with the disease, the cause of Eliza’s ailment is unknown. Erica said her daughter will need to take medication into her adult life.
Patients now have access to the benefits of research through the discovery and development of drugs like biologics, but excessive cost-sharing makes it extremely difficult for many to afford. Eliza is among the 50 million Americans or one of the 300,000 children suffering from arthritis.
The Netzork’s, who originally hail from Maine, said many New England states only recently got pediatric rheumatologists. Erica said it’s important for families to have easy and immediate access to these specialists without having to travel hundreds of miles.
Even families who have adequate insurance find they must shell out thousands of dollars for medication because there is no guaranteed co-pay for the disease. Patients pay a percentage of what the medications cost.
“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. “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.”
Eliza, who will attend kindergarten at Mary D. Lang school next year, will be accompanied by her mother. Her sister, Lil, and her father, Ken, will remain in Kennett Square.