Maryland- Need Better Reporting
Lyme Disease Education and Support Groups of Maryland
April 19, 2012
Dear Senator Pipkin and Staff,
I hope you had a successful session and you are finally getting the rest you and your staff surely deserves. When you are able, I’d appreciate it if you would review this information and help us solve this ongoing problem that negatively affects people in your district, statewide and nationally.
The Maryland DHMH reported in a recently released study that in 2009 a total of 5,722 cases of Lyme disease were not entered into the Maryland database in spite of the fact State and Federal regulations require all cases of Lyme disease be reported. The total number of Lyme cases that year were reported to be 1,466. If the 5,722 cases had been entered, Maryland could have been #1 in the nation for new cases of Lyme disease not only that year, but in each of the following years the under-reporting trend continued.
Low numbers give an inaccurate picture of the disease’s spread and the need for increased awareness and prevention efforts. Secondly, numbers help drive the research funding, and as you know after over three decades we are still in desperate need of a reliable Lyme disease test and an actual cure for those who are suffering.
As an example of the negative affects this under-reporting situation has created, just this week the former (retired) head of the NIH Lyme disease grant program, commented in an article:
"Despite the spread of deer ticks, incidence of Lyme disease itself appears to have stabilised, says Dr Phillip Baker, Executive Director of the American Lyme Disease Association. Over the last 10 years the figures show that the reported rate of infection has remained roughly the same - it's not increasing to epidemic proportions," he says.”
Due to under-reporting this is what appears to be happening, the stabilizing of a disease’s spread, when in fact that is far from the truth. The Maryland DHMH reported the reasons the thousands of cases of Lyme disease were never entered into the data base were as follows.
“In 2009- "seven (29%) LHDs (local health departments) lost LD surveillance staff in the past 2 years; one lost all staff and does not currently investigate LD. In 2008, 16 (75%) LHDs investigated each LD report while 5 (21%) investigated only if sufficient laboratory evidence of infection. By 2011, 10 (42%) LHDs investigate LD reports only if sufficient evidence."
In 2005, I noticed several counties in Maryland were not reporting many, if any cases of Lyme disease, yet the counties bordering them had high numbers. With the Delegates assistance we were able to determine the problem and they were able to address this situation, however, thousands of cases missing from past years’ totals were never added to Maryland DHMH or the Centers for Disease Control (CDC) national totals.
It appears although additional funds were allotted to the Maryland DHMH at that time, specifically for counting Lyme disease cases and improving the reporting system, the DHMH is still not complying with State and Federal regulations, and in turn this is hurting residents who have Lyme or who will contract it in the future.
I understand the surveillance criteria that was established and changed multiple times over the years by the Council of State and Territorial Epidemiology (CSTE) to determine a “reportable case” of Lyme disease is cumbersome and complex, and in fact adhering to the criteria dismisses more cases than it counts. I also realize doctors often will not report Lyme disease cases due to the time it takes from their practice, the lack of enforcement of the regulations to prompt them to comply, and the fact health care professionals are being targeted and investigated when they are known to treat high numbers of Lyme patients by State and CDC officials, and insurance companies who have to pay for treatment that can be costly. The Lyme blood tests, reported by Johns Hopkins to miss up to 75% of those infected in Maryland, also negatively affects the actual number of cases in the State that are reported.
Considering these facts, the State of Maryland has a silent, uncontrolled growing epidemic on its hands that is destroying lives and entire families in the process. We need some one responsible for overseeing this situation and the ability to, at the least, have the DHMH comply with State and Federal regulations. I am afraid that unless our legislators get involved the status quo will prevail and the situation will only worsen.
This should be considered a top priority for the welfare of Maryland’s residents. Factoring in the CDC’s 10-fold calculations (10 cases missed for each one reported) and the number of cases never entered into the Maryland data base, we are seeing approximately 200 new cases of Lyme disease EACH DAY in Maryland. Our volunteers see and feel those numbers growing and continue to work furiously trying to keep up with the countless requests for help, however, we need those at the DHMH who are responsible for addressing this unchecked epidemic to help us get this situation under control.
I am asking that you please check into this situation, remedy it as soon as possible and kindly report your findings and results to me if you will so I can give some hope to those whose lives may depend on this situation being adequately addressed so we can all get closer to what is really needed- a cure for Lyme disease.
As always, thank you for your concern and support, and don’t forget, do a tick check!
Lucy Barnes
Lyme Disease Education and Support Groups of Maryland
631 Railroad Avenue
Centreville, MD 21617