Local teacher lobbying CongressPublished 7:08pm Thursday, February 28, 2013
Dowagiac substitute teacher Jennifer White heads to Capitol Hill Saturday to lobby Congress March 4-6, including U.S. Rep. Fred Upton, about arthritis.
White, 39, of Sister Lakes, was diagnosed with the disease when she was 3.
“A lot of people think it’s an old person’s disease,” she said Wednesday. “For me, I was shy and hated it. I didn’t know anyone like me.”
Classmates teased her.
Arthritis is an inflammation of one or more joints, which are where two bones meet.
There are more than 100 types of arthritis, which causes joint pain, swelling, stiffness and limit movement.
An estimated 1.3 million people in the United States have rheumatoid arthritis.
That’s almost 1 percent of the nation’s adult population. Nearly three times as many women as men have the disease. It most commonly begins between ages 30 and 60. It often occurs later in life for men.
White, who moved to this area two years ago from northwest Indiana, has endured 10 surgeries since age 14. She has 14 artificial joints in her hands. Another surgery is set for next month.
This will be her first time attending the 15th annual advocacy summit. She has been active with the Arthritis Foundation for seven years, starting with walks which take place from California to Indianapolis and Grand Rapids.
In 2010, she served as the national spokesperson. She teaches elementary grades and some middle school.
Arthritis advocates are promoting The Patients’ Access to Treatments Act of 2012 (H.R. 4209), introduced by Rep. David B. McKinley, R-W. Va., and Rep. Lois Capps, D-Calif., last March 19.
This bill would limit co-payment, co-insurance or other cost-sharing requirements insurance plans require for “specialty” medications.
By reducing out-of-pocket costs, this legislation would make access to innovative and necessary medications more available to patients with chronic, disabling or life-threatening conditions.
White said her infusions cost $10,000 a month, of which health insurance covers but 80 percent. She said arthritis costs the U.S. economy more than $86 billion a year.
“I know kids a year old whose parents give them shots twice a month,” she said.
Pills, shots or intravenous infusions “make you feel better,” White said, “but it’s a double-edged sword because there are side effects, like cancer.”
White said her group also wants Congress to know doctors should specialize in pediatric rheumatology because 300,000 kids have it, but 11 states have no such specialists and seven have only one.
Michigan’s nearest is one in Kalamazoo, she said.
With rheumatoid arthritis, the immune system, designed to protect health by attacking foreign cells such as viruses and bacteria, instead go after the body’s own tissues, specifically the thin membrane that lines the joins.
Fluid builds up in joints, causing pain and inflammation that’s systemic — it can occur throughout the body.
Cause is unknown, though most scientists agree a combination of genetic and environmental factors is responsible.
Researchers have identified genetic markers that cause a tenfold greater probability of developing it. Researchers are also looking at infectious agents, such as bacteria or viruses, which may trigger the disease in someone with a genetic propensity for an incurable disease which can affect organs and vision.
White said, when she was young and lived on her dad’s Marine base in North Carolina, she tripped and fell in a rabbit hole, leaving her in pain too intense to continue tumbling in gymnastics, so her mom took her to the doctor.
She and her husband, James, have a son, Logan, in third grade. He doesn’t have it.