PRESS RELEASE FOR IMMEDIATE RELEASE
National Lyme Disease Association President Addresses Maryland House of Delegates Rural Caucus
Focus on research and help for Maryland patients who cannot get diagnosed & treated
Annapolis, March 9—In a presentation before the Maryland House Rural Caucus, 40 delegates heard the President of the national Lyme Disease Association (LDA) provide an overview of Lyme disease, types of research being carried out on the disease in Maryland, and examples of why Maryland patients often cannot get diagnosed or treated.
According to LDA President Pat Smith, whose organization has affiliated groups in Maryland, cases here have drastically increased, and Maryland is now “7th in total case numbers in 2005 (1235) and 9th in rate of incidence (22.1/100,000 pop.). The Centers for Disease Control & Prevention (CDC) states that only 10% of cases that meet its narrow surveillance criteria are reported, therefore about 12,350 new cases of Lyme disease occurred in Maryland in 2005. That number does NOT, in any way, count the number of people contracting Lyme who do not meet the CDC criteria, which are for surveillance, not diagnostic, purposes.” She expressed grave concern for the risk to children, since CDC statistics indicate Lyme is most common in boys ages 5-19 and combined boys & girls, ages 5-9.
Throughout her presentation, Ms. Smith mentioned spreading tick populations, new strains of the bacteria that cause Lyme and new organisms being carried by ticks. The LDA has funded research mapping the genome of different strains of the Lyme disease bacterium, the mapping carried out by The Institute for Genomic Research, TIGR, in Rockville. The research has shown that different strains can mix their genetic material, giving the bacteria better survival characteristics.
LDA has also funded a joint NASA/NIH research project taking place at the National Institutes of Health which is looking at the bacterium found in a much more aggressive tick which is expanding its range–traditionally a southern one, and now as far north as Massachusetts and Maine. The lone star tick carries a bacterium similar to the one which cases Lyme disease but it produces a Lyme-like disease called STARI (Southern tick-associated rash illness) which is found in Maryland patients.
The LDA and the Army have been sharing tick research information, and she informed the delegates about work from US Army CHPPM, Aberdeen Proving Grounds, which has developed a laptop sized device which can test ticks in the field for any known pathogen so that troops could eventually be able to receive immediate treatment for tick-bites in the field. This research needs to be brought into the civilian arena, she told the Army on her visit there.
Unfortunately, the government is not focusing enough monies on the disease, $32.6 million in 2005 compared to West Nile Virus at $80.8 million. Therefore, LDA and its allied organizations support the passage of HR 741, introduced into the US House of Representatives in January 2007. Six of 8 Maryland Congressman are already co-sponsors of the Smith/Stupak bill, which provides $100 million over 5 years for research, prevention, physician education and formation of a federal task force.
LDA and four congressmen including Wayne Gilchrest (MD-1) met with CDC Director Dr. Julie Gerberding in July of 2006 to discuss the lack of focus on the disease and policies which affect diagnosis and treatment of patients. The CDC and LA have had continued dialogue on this issue.
Ms. Smith made the delegates aware of the investigation initiated by Connecticut Attorney General Richard Blumenthal. This action has been taken against the Infectious Diseases Society of America who recently released guidelines that recommend against doctor discretion and against all forms of treatment for chronic Lyme disease. The restrictive guidelines are causing insurance companies to cut off patients and causing some doctors not to treat chronic Lyme disease, a debilitating condition which can attack the joints, muscles, heart, and the brain
LDA and Time for Lyme, its Connecticut affiliate, are preparing to announce the opening of the first endowed chronic Lyme disease research center at Columbia University in New York in the Spring of 2007. “All patients can benefit from a major institution focusing on chronic Lyme disease research,” says LDA President. “If government won’t provide the focus, patients will,” she added.