A Lyme disease activist and sufferer claims two high-ranking state Department of Public Health officials are stalling the release of a report that could shed more light on the disease. -
Patricia A. McCleary of Sturbridge said state epidemiologist Dr. Al DeMaria and state veterinarian Dr. Catherine Brown are not endorsing the findings of the Massachusetts Lyme Disease Commission’s report, which was originally slated to be released in October.
Mrs. McCleary, Dr. DeMaria and Dr. Brown all served on the 21-member commission that researched the report.
Mrs. McCleary said Dr. DeMaria and Dr. Brown told members of the commission they didn’t realize they were representing their department and, as a result, did not have the authority to sign off on the final report.
“They have delayed us now for a couple of months, and now they’re saying, no, we will not sign off on it, knowing that it is going to hold up future legislation that could come from this report that could help people,” Mrs. McCleary said. “This is holding up a huge process for people who really need it and it’s not OK that our DPH is getting away with this.”
State Rep. David P. Linsky, D-Natick, commission chairman, said neither Dr. DeMaria nor Dr. Brown has supported the findings of the report.
“I am disappointed that the DPH appointees chose not to sign the final version of the report,” Mr. Linsky said. “I have asked the DPH commissioner for a specific list of reasons why they cannot and I am waiting for that response.”
On April 28, 2011, the House of Representatives approved creation of a Lyme Disease Commission to investigate the need for new screening programs and other steps to combat the illness, which is spread by bacteria from bites by infected ticks.
The amendment authorizing the commission charged it with studying the value of public health screening in high-risk areas, more prevention steps in schools and more medical research on the progression and treatment of Lyme disease.
“If you look at the language of the statute that set up the commission, there were various people that were appointed by various agencies and they were there to represent the interests of their agencies or organizations,” Mr. Linsky said. “From day one, the people of the commission should have had the authority to speak on behalf of their agencies or organizations.”
Although no one has officially signed the Lyme Disease Commission’s final report, Mr. Linsky said there is a consensus of the commission to the report’s current text, with the exception of the DPH appointees.
When it is signed and finalized, Mr. Linsky said the report will be published and posted and he and his fellow legislators serving on the commission will file any necessary legislation based on the findings and recommendations agreed on in the report. However, issues dealing with the budget will have to be taken up during the budget process.
Mrs. McCleary said she is not surprised by the state Department of Public Health’s stance on the matter, calling them “gatekeepers” for the Center for Disease Control and Prevention and the Infectious Disease Society of America.“We can go forward without them but it sure would have been nice when we’re talking about such a crisis and epidemic here that the Massachusetts Department of Public Health is concerned about it and want to improve on what’s happening. And once again, they’re showing us they’re not.”
But Sam R. Telford III — a commission member and professor in the department of biomedical sciences and infectious diseases at Cummings School of Veterinary Medicine at Tufts University in North Grafton — said he thinks the delay in Department of Public Health members’ signatures has to do with all the difficulties the department has had in the last two months.
In mid-September, state Public Health Commissioner John Auerbach and Lab Bureau Chief Dr. Linda Han both resigned and Julie Nassif, the director of the state’s analytic chemistry division, was fired in the wake of the scandal at the state drug lab. State chemist Annie Dookhan allegedly tampered with drug evidence for tens of thousands of criminal cases.
A national fungal meningitis outbreak was linked to New England Compounding Center in Framingham, a speciality pharmacy that was regulated by the agency’s Board of Registration in Pharmacy.
Laura Smith is serving as the department of public health’s interim commissioner.
“My guess is that it’s an administrative glitch because of the flux in leadership at the Department of Public Health,” Mr. Telford said. “The DPH has done a marvelous job considering the limited resources that they have in terms of defining the problem here.”
Anne Roach, media relations manager at the Department of Public Health, said her department commends the commission “for its efforts to produce a meaningful report that examines the seriousness of Lyme disease in Massachusetts.”
“The department’s first priority is to protect the public health and it will continue to identify ways to reduce the transmission of Lyme disease and all tick-borne illnesses,” Ms. Roach said. “As part of its efforts to increase awareness about the growing extent and seriousness of Lyme disease in Massachusetts, DPH is working collaboratively with the commission. DPH focuses its efforts on the promotion of proven prevention methods through educational materials available online as well as outreach to local boards of health and community groups.”
Mrs. McCleary said the report has “some pretty shocking” stories from chronic Lyme disease sufferers, as well as “good and really important” recommendations, including the need for better testing methods, better education of physicians about Lyme disease’s symptoms and treatment, and more up-to-date information readily available to the public, especially on the department’s website.
“The standard treatment that is available right now is not working for people, quite frankly, and there are other options out there,” Mrs. McCleary said. “In Massachusetts, people have to go out of state and they have to self-pay for their treatment and that’s not OK.”
Mrs. McCleary said her husband and their two adult sons have been treated for Lyme disease.On top of that, Lyme disease has cost the McCleary family a small fortune.
“By the time we saved my life, there was no college fund or anything when it came time for my kids to go to school. We are hanging by a thread. Our house is on the market. But you do what you have to do,” she said. “Anybody who got this disease is in debt, unless they are a millionaire.”
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