Our Role & Impact

Legislative Activities

Founded in and serving the Washington, DC area since 2001, NatCapLyme educates government officials and healthcare industry leaders about Lyme and tick-borne diseases on behalf of individuals and families of those afflicted with such diseases. We actively engage with all sides of the Lyme and tick-borne disease issue to encourage measurable progress. NatCapLyme is an all-volunteer organization, but we have an appointed legal and legislative counsel, as well as individual board members, who bring political and legal experience to the table. Our legislative activities are ongoing, always focused on improving the lives of tick-borne disease sufferers.

Legislative-activities

We’re fighting on many fronts. We invite you to see what we’re doing on a state and federal level:

Letter to Delegate Marshall Supporting HB 1743

February 7, 2007
Delegate Robert G. Marshall
General Assembly Building
P.O. Box 406
Richmond, Virginia 23218RE: House Bill No. 1743

Dear Delegate Marshall:

This letter is in support of House Bill No. 1743 that you introduced in December, 2006. Thank you for this important legislation. HB 1743 would make the reporting of Lyme Disease cases in the Commonwealth of Virginia mandatory. This is an important bill that deserves to be passed.

Our organization is the largest Lyme Disease Association in the state of Virginia and learns daily of newly diagnosed Lyme Disease patients. Yet the CDC reported only 274 cases of Lyme disease in Virginia for 2005. Our experience is that there are far more cases than that in our state, and the Centers for Disease Control itself has stated that Lyme Disease is under reported by as much as a factor of 10.. The following table demonstrates the bias in the numbers against Virginia:

Reported Lyme Disease Cases
Year USA* Virginia* Northern Virginia**
2005 23,305 274 158
2004 19,804 216 106
2003 21,273 195 109
2002 23,763 259 164
2001 17,029 156 108

*MWWR (CDC)
** Va. Dept of Health

As shown by the above chart, Virginia is radically disproportionate to the national average of Lyme case reporting. Inaccurate counts mean the state will be eligible for less federal money to treat the disease and may convince people that Lyme Disease isn’t a problem in the state of Virginia.

The disaster for Virginia is summed up in this statement from Connecticut Attorney General Blumenthal, reported in the News-Times on January 28, 2007. “The problem of the under-reporting of this disease is particularly harmful for the public health . . . If the public is wrongly lead to believe that the incidence of the disease is low, they will be less diligent in their prevention efforts.”

The CDC states:
Studies from as far back as the early 1990s suggested that LD cases were underreported by six to 12-fold in some areas where LD is endemic (2,3); the current degree of underreporting for national data is unknown.

So, we know that Lyme disease in Virginia could be as much as twelve times the 274 cases reported in 2005 alone.

The CDC continues:
In addition, differences in the demographics of reported cases among states with above and below average incidence suggest variation in diagnostic and reporting practices among states. Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients.[1]

Thus, even that twelve fold number may be low, given that many physicians are only diagnosing Lyme based on a standard that was developed only for surveillance, and not for clinical diagnosis. Moreover and most importantly, many Lyme Disease tests are sent to out-of-state laboratories for analysis and these positive results are not required to be reported back to the Virginia Dept of Health. Many cases go unreported even though people are treated for the disease.

The CDC has stated that Lyme disease is the fastest growing vector borne disease in the United States and that it affects all states. All the facts lead to the important conclusion that Virginia needs an effective and accurate system of reporting Lyme disease cases. Only then will Virginians know the extent of this menacing disease and take effective and appropriate measures to deal with it.

It is also important that the committee include a method of insuring that the Department of Health define the diagnosis of Lyme disease as a physician’s clinical diagnosis and that it not be restricted to the formal CDC surveillance criteria, which is really a research standard, not a clinical standard.

The National Capital Lyme Disease Association is fully in support of the passage of HB 1743.

Sincerely,
Monte Skall
Executive Director

[1] http://www.cdc.gov/MMWR/preview/mmwrhtml/mm5317a4.htm#tab

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