by Jason Bartlett | February 6, 2007 2:13 PM | Permalink
People are ticked off about Lyme Disease. And the state is doing nothing about it – it’s even making it harder to do something about it. So Jason Bartlett learned when he ran for state representative on a health care platform. He got elected and, in his first few weeks in office, introduced a bill pushing for action on Lyme. The attorney general joined him. But Bartlett faces an uphill fight. He writes about that in the latest installment of his freshman legislator’s Independent diary.
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My mother has been suffering from Lyme disease for the last ten years. I have had to endure (lovingly) many conversations on the topic. I have known that the medical practices to treat Lyme disease have been controversial and the public’s awareness of the disease is far too low. On the campaign trail, I was surprised that the issue of Lyme disease was brought to my attention. One of my constituents approached me and wanted me to give attention to it if I was elected.
This constituent was one of the first to call after my election to the State House. She invited me to attend a Fairfield County Deer Management meeting in Wilton. These folks believe that if we reduce the number of deer in Connecticut we will reduce the number of the ticks that carry the disease.
At this meeting there was also other Fairfield County Lyme disease activists present who had other legislative issues. Each group seemed eager for information as to how you get legislation on these important issues. During the discussion I was intrigued by one problem they had brought up. The question: Why did the State of Connecticut stop effectively monitoring positive Lyme disease cases in January of 2003?
I invited everyone to meet with me in my business office in Bethel. During our meeting I agreed to introduce legislation mandating that the State of Connecticut return to procedures set out by the federal government’s Center for Disease Control and effectively force blood laboratories to report positive Lyme disease tests to the Department of Public Health. The DPH and the labs would also have to cross check with physicians to insure that these were first time results reported.
These were the same procedures the Department of Health followed between 1998 and 2002. Unfortunately, these procedures stopped in 2003; since then the media has noted the dramatic decline in Lyme disease cases. In 2005 the number of cases was less than half the number of cases reported in 2003. The media fails to mention that the decline has nothing to do with the infection rate, but instead is the result of cessation of lab reporting.
If federal dollars become available for the prevention of Lyme disease or for research or public awareness we as a state are in a terrible position to receive those dollar,s because we have gone from the number one state in cases for Lyme disease to the fifth state for cases for Lyme disease. All this because we do not accurately report the cases!
I decided to introduce a second bill on Lyme disease. It would create a statewide task force to review the strategies and make recommendations in regards to prevention, education, medical practices, use of taxpayer and federal dollars and analysis of the coordinated responses by the Depts. of Health and Environmental Protection.
Presently the bills have been boxed. That means they did not make it past the screening committee for Public Health. I was mortified to learn that they had suffered a temporary death the day before I was scheduled to have a press conference to get the word out to the public and my fellow legislators. After 45 minutes with the chair of Public Health I felt I had a reasonable chance of having the bill revived and go to a public hearing. I invited many constituents and activist from Greater Danbury to come and show support for the bills. We contacted Attorney General Blumenthal’s office; he agreed to attend and speak at the press conference. I explained to the activists that they needed to start an email campaign and begin to make individual calls to the press so that they would be interested in our press conference and attend.
Knowing that my bill was close to extinction we went ahead with the press conference and had some significant coverage. NPR ran the pre-story all weekend and on the day of the conference. The Danbury News Times, my local paper, ran a huge article prior to the event. Channel 30 and 61 showed up. The CTN network carried the entire press conference as well, which was significant, because many of the legislators and staff at the Capitol would see it later.
AP also carried a story that infuriated me. The spokesman for the DPH in my opinion was miscasting the arguments. DPH said that the incidence of Lyme disease reporting made Connecticut number two, not number five, in the country, as I was quoted. The truth? The feds use numbers of cases to determine dollars, not incidence. I was referring to cases. Federal dollars for HIV programs, for example, are decided by cases, folks!
DPH said in the article that they were already using federal dollars on two pilot programs for Torrington and Ledgelight health district. My response? How about the rest of the state, folks!
DPH said they would roll out electronic monitoring of Lyme disease soon. Of course they have been promising electronic monitoring since 2003, when they ceased to accurately report. And, don’t forget you need human beings to cross check. Hmmm. I was learning the power of resisting a legislator’s bill, all right.
I implored everyone at the press conference to contact their legislators and members of the Public Health Committee, that these were important bills which would impact our public’s health. And, I implore everyone reading this column to do the same. Lyme disease is controversial. The medical community is divided. New guidelines restrict a physician from using clinical judgment to diagnose and treat this devastating disease. Our children are at highest risk because they are exposed to our outdoors and are the most common victims of Lyme. The underreporting of this disease is particularly harmful for the public health, because if we don’t know how serious Lyme disease is affecting our state’s population, we will be lulled into a false sense of security.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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bettyg
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MY RESPONSE if it goes?:
Jason, thank you so much for your wonderful, 1st-hand story about CHRONIC LYME disease that your Mom has and its existence in Conn.
I applaud you for creating 2 lyme bills in your state. I hope you get OVER the hurdles they are throwing your way to get both of them in full session and APPROVED for the many lyme patients in Conn., but also nationwide!
I've had chronic lyme now 37 years since Jan. 1970, and misdiagnosed for 34 years by 40-50 MDs/specialists! I was finally correctly diagnosed using Igenex, Calif.'s western blot igm and igg blood tests; my primary MD of 25 years gave me the CLINICAL diagnosis.
I traced all this back to Jan. 1970 when I went to a MD with flu-col-like symptoms. He diagnosed me with mononucleosis; actually it was Epstein Barr virus which shows up in my body now in 3 strains of it.
I didn't see a tick; did NOT have the bulls-eye rash, and never heard of lyme/tick disease at the time. I did NOT have a pet. It was below zero weather in Iowa; so no outdoor things to do or garden.
My tick culprit had to come off a LIVE Christmas tree that my folks always had every year until the youngest of 5 kids moved away from home!
Ticks in all 4 stages are so small you can't see them: first 2 states, they are the size of a period at end of sentence; female is the small o, and male is a LARGE O unless blood engored.
Our US Congress needs to pass the new lyme disease bills in the senate and house that they failed to do in Dec. 2006! NINE years ago, the Lyme Disease Assn. began the campaign to get lyme bills NATIONWIDE; too date, congress has FAILED all of us chronic lyme patients.
IDSA, infectious drs., have added to our dilemna with their new 06 guidelines created withOUT a CHRONIC LYME LITERATE MD in attendance. 5 of 14 mds present treat lyme for 30 days and under; NONE for CHRONIC lyme as they do not believe it exists! WAKE UP IDSA; hundreds of chronic lyme patients are dying every day. We want quality of life; that is NOT TOO MUCH TO ASK FOR, IS IT? no~
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