NJ woman puts personal face on Lyme disease
6:37 PM, Jul 17, 2012 |
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WASHINGTON — Lyme disease victims are often misdiagnosed, refused certain treatments and discriminated against, a leading advocate of efforts to combat the illness told House lawmakers on Tuesday.
Patricia Smith of Wall Township, N.J., president of the Jackson, N.J.-based Lyme Disease Association and the mother of a Lyme disease victim, urged members of the Foreign Affairs Subcommittee on Africa, Global Health, and Human Rights to fund more research into the disease.
“Patients with Lyme disease need a research agenda that reflects outcomes that matter to patients, namely effective diagnostic tools and effective treatments that restore them to health,” she said.
Rep. Chris Smith, R-N.J., is among a growing number of lawmakers pushing for a national strategy to combat the sometimes serious illness that infects tens of thousands of people every year.
Rep. Smith, who chaired Tuesday’s hearing, is the lead sponsor of a House bill that would create a Lyme disease advisory committee made up of researchers, patient advocates and agencies. The bill also aims to improve diagnostic tests, surveillance, research and other efforts.
“The key with the bill is to get everyone in the room, get all of the best available science and then aggressively attack this hideous disease that has ruined so many lives,” Smith said.
A similar bill is pending in the Senate, where Sens. Jack Reed, D-R.I., and Richard Blumenthal, D-Conn., say they hope to pass it this year.
“The tick problem is growing. The Lyme disease problem is growing,” Reed said. “This requires resources.”
Lyme disease is the most commonly reported vector-borne infectious disease in North America, with more than 30,000 cases reported to the Centers for Disease Control and Prevention in 2010.
This year, 8,400 cases have already been reported, according to the CDC. Lyme disease experts believe the number of actual cases is likely larger, in part because tests for the disease are unreliable.
Lyme disease is named after Lyme, Conn., where the illness was first discovered in 1975. It’s transmitted through the bites of infected deer ticks, which are about the size of a poppy seed. Those infected often develop a fever, headache and fatigue, and sometimes a rash that looks like a bull’s eye centered on the tick bite.
Most people recover with antibiotics, although some symptoms can persist. If left untreated, the infection can cause arthritis or spread to the heart and nervous system.
The Infectious Diseases Society of America, an influential doctor’s group that sets guidelines for treatment of Lyme disease, was invited to Tuesday’s hearing but declined to attend. The group considers Lyme disease a rare disorder that is “hard to catch and easy to cure.”
Other advocates for efforts to combat Lyme disease say that the illness isn’t rare and that many patients go untreated or under-treated, which causes their symptoms to continue indefinitely.
“I have met scores of patients suffering the devastating effects of Chronic Lyme,” Rep. Smith said at the outset of the hearing. “I have been dismayed and angered by the unwillingness of some to take a fresh, comprehensive look at this insidious disease.”
Patricia Smith of New Jersey said her daughter was one such case, missing four years of school and facing frequent seizures.
“My daughter was able to go on and graduate from Jon Hopkins and be successful in life. Others I worked with have not been that fortunate,” she said. “Some children with Lyme have been unable to graduate, others did not survive the disease, and quite a few committed suicide.”
If the legislation passes, Lyme disease would be the latest in a string of diseases to be targeted with a national strategy. The most recent was Alzheimer’s disease.
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