EASTON With U.S. Sen. Barbara Mikulski, D-Md., signing on to support a national Lyme disease bill, all of the state's representatives are now on board.
The legislation is aimed at helping to provide education about the disease, fund research for a better testing method and create an advisory committee. A similar bill introduced last session also had the support of all Maryland's lawmakers but it did not make it to the floor for a vote.
"We've been trying for years to get a bill passed," said Lucy Barnes, director of the Lyme Disease Education and Support Groups of Maryland. "It's very unusual to have them all signed on to co-sponsor a bill."
In the U.S. Senate, Sen. Chistopher Dodd, D-Conn., introduced S-1352, the Lyme and Tick-Borne Diseases Prevention, Education and Research Act of 2009,on June 25. Sen. Ben Cardin signed on as an original co-sponsor, along with several senators from other states.
"Marylanders should feel secure when boating or hiking or otherwise enjoying our great outdoor treasures. Lyme disease has put all this at risk for far too many," Cardin said. "The Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2009 will provide the kind of federal investments and research we need to stem the alarming rate of cases, particularly in Maryland, where reported cases of Lyme Disease jumped more than 650 percent since 1993, according to the Centers for Disease Control.
he diagnostic, research and public awareness tools this bill will provide are essential to tracking and stopping the spread of Lyme Disease."
Starting in February, Barnes and her fellow volunteers worked to gather support to re-introduce a Lyme disease bill. Among the newest supporters are Rep. Frank Kratovil, D-Md.-1st, and Rep. Donna Edwards, D-Md.-4th.
"It was tough getting everyone contacted," Barnes said. "Chronically ill Lyme patients across the state were encouraged and very thankful for the unanimous support from their state Congressional delegation. Senator Cardin did an amazing job and has been supportive of patients. It gives patients hope that we're making progress trying to get help. We believe patients should be able to go to their local doctor and get diagnosed and treated and not have to leave the state."
The Lyme Disease Association had another recent success when language was added to both the Senate and House appropriations bills.
The Senate bill encourages the Centers for Disease Control and Prevention to develop more accurate tests and improve testing to account for acute and chronic Lyme disease and to examine feasibility of a national surveillance system and a physician education program. It also encourages the National Institute of Allergy and Infectious Diseases to sponsor a conference which represents all scientific viewpoints and likewise encourages the Agency for Healthcare Research and Quality to create a peer review literature data base that includes "persistent infection." And finally, it urges the Secretary of Health and Human Services to improve government agency coordination in diagnosing and reporting Lyme disease.
In addition, the House bill directs the HSS Secretary to review the coordination of efforts on tick-borne diseases. It also includes an increase of $3.66 million for the CDC for Lyme disease.
Maryland is now fifth in the nation in the number of Lyme disease cases. The state's tick population has also risen.
According to the most recent reports, there were 2,929 cases of Lyme disease in Maryland in 2008. Talbot County nearly doubled its cases, Queen Anne's County's cases more than doubled from last year and Dorchester County had seven times more cases in 2008 than in 2007. And that's only counting a fraction of the actual number of cases, Barnes said.
The most recent surveillance criteria enacted by the Council of State and Territorial Epidemiologists last year excludes many cases that would have been reported before. According to the CDC for every one case reported, between seven and 12 are missed.
Barnes is hopeful the new legislation will provide funding so people can get a better idea of what's going on and where it's occurring. Her patient advocacy group has been busy garnering support for the legislation and testifying before the Infectious Diseases Society of America panel reviewing guidelines that recommended against treating patients who are chronically ill.