PROVIDENCE, R.I. — A group of lawmakers is pushing for a national strategy to combat Lyme disease aimed at speeding advances in diagnosis, treatment and prevention of the sometimes serious illness that infects tens of thousands of people every year.
“The tick problem is growing. The Lyme disease problem is growing,” said Sen. Jack Reed, D-R.I., a cosponsor of the bill in the U.S. Senate. “This requires resources.”
The legislation provides for the establishment of an advisory committee made up of researchers, patient advocates and agencies, as well as the coordination of support for developing better 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,” said Rep. Chris Smith, R-N.J., the sponsor in the House who has pushed similar legislation in the past.
Reed and Sen. Richard Blumenthal, D-Conn., who introduced the Senate bill, said they hope to pass a bill this year.
“It is essentially designed to create awareness and understanding in public health agencies about the urgent and immediate need to act more effectively against a disease that truly has reached epidemic proportions,” Blumenthal said.
Lyme disease is the sixth most common reportable disease in the United States, and the second highest (behind chlamydia) in the Northeast, said Dr. Ben Beard, director of vector-borne diseases at the federal Centers for Disease Control and Prevention.
In recent years, Lyme disease cases have increased around the country.
Some of that may reflect improved testing and reporting, Beard said. But he said researchers also believe there has been a real growth in cases, possibly because of more deer and the spread of suburbia into previously uninhabited places.
This year, 8,400 cases have already been reported, the CDC said. Lyme 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 tell-tale 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.
Treatment can be tricky, especially in cases that aren’t caught early.
Reed said the bill would ultimately result in more federal money aimed at Lyme disease, welcomed news to Thomas Mather, a professor and director of the University of Rhode Island’s Center for Vector-Borne Disease, which runs the TickEncounter Resource Center.
A grant from the U.S. Department of Agriculture in 2006 helped start his program, which works to reduce tick-borne illnesses including Lyme disease. Mather said it’s difficult to get the money he needs to keep the work going, and he hopes enacting a federal strategy will make that easier.
“We’re really looking for ways to sustain these activities,” he said. “Mostly what’s needed are more resources.”
The Infectious Diseases Society of America, an influential doctor’s group that sets guidelines for treatment of Lyme disease, has opposed similar legislation in the past. In 2009, it raised concerns about whether such a panel might be slanted and not adequately represent the views of the scientific community.
It has not yet taken a position on the pending legislation.
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 being Alzheimer’s disease.
Smith has scheduled a Congressional subcommittee hearing on Tuesday about challenges in diagnosing and managing Lyme disease.