Help Needed to Save CT Lyme Disease Bill

by: CTPatriot

Wed May 27, 2009 at 08:07:15 AM EDT

In late 2007, I wrote an article that was posted here on MyLeftNutmeg describing the battle royale that was being waged in the medical community over the diagnosis and treatment of Lyme disease. That article, Attack of the Chronic Lyme Denialists, illustrated how greed and conflicts of interest among a small group of researchers is corrupting the science and medical guidelines which affect the standard of care used by doctors across the country.

That article was followed up by another piece which detailed the fallout from this battle, the prosecution of Dr. Charles Jones, a New Haven area pediatric Lyme specialist with such a sterling record of success in the treatment of pediatric chronic Lyme disease that patients have come to him by the thousands from literally all over the world. Unfortunately, the small cabal of researchers who control the standard of care for Lyme disease, along with the Infectious Diseases Society of America, which publishes their Lyme disease diagnostic and treatment guidelines, the insurance industry, and the CT Department of Public Health, have chosen to enforce a very narrow and scientifically unsupported definition of Lyme disease, one that completely dismisses the possibility that persisting Lyme disease symptoms after standard treatment regimens could be caused by persisting infection.

They enforce these standards despite peer reviewed science proving that the infection can persist and despite the fact that there is no diagnostic test in existence that can either prove or disprove whether a patient's ongoing symptoms are caused by persisting infection. Dr. Jones is among those who have chosen to treat chronic Lyme disease with longer than IDSA recommended courses of antibiotics, and as has happened to chronic Lyme doctors across the country, he was targeted by the state medical board as a result. You can read more about the bogus case against Dr. Jones here: CT Pediatrician to be Sanctioned for Lyme Disease Treatment.

In 2009, sympathetic legislators, some of whom have experienced the ravages of chronic Lyme disease in their own families, drafted a bill which would ensure that doctors in this state would be free to treat Lyme disease using longer courses of antibiotics without fear of retribution by the state medical board. That bill recently passed the CT House with a unanimous 137-0 vote. It was headed for a vote in the Senate this week, but one unnamed Senator has apparently objected to the bill being included on the consent calendar which would guarantee its coming up for a vote, no doubt hoping to run out the clock on it. The bill can still be brought up for a vote, but it must first be brought up for discussion. We need your help in lobbying the Senate to bring this bill to the floor and vote favorably on it before the legislative session ends.

Following (below the fold) is the Action Alert related to this matter. More information on this bill and related video of testimony and debate can be found here: http://www.lymerights.org/html/ct_lyme_bill_6200.html

May 26, 2009

URGENT

TO: CONNECTICUT RESIDENTS, BUSINESSES & GROUPS THAT SERVE CT

All must call our CT State Senators to ensure passage of H.B. 6200

Your access to care & your doctor's ability to treat you for Lyme are being challenged!

HISTORY: On April 30^th, 2009, H.B. 6200, An Act Concerning the Use of Long-term Antibiotics for the Treatment of Lyme Disease passed unanimously in the Connecticut House of Representatives. H.B.6200 was given a favorable report and put on the Senate calendar. 

PROBLEM: The Legislature ends June 3, 2009. If the senate does not bring H.B. 6200 up for a vote by June 3^rd the bill will die. We have reasons to believe that doctors associated with the IDSA are working to destroy the monumental patient effort in CT.

ACTION: Our CT State Senators need to hear that you want the Lyme Bill to be brought up IMMEDIATELY and voted on favorably with no changes from the House passed version.

WHAT TO DO: Starting MAY 27 (WED.) or as soon as you get this Alert:

1. Call your own CT state senator first. To find your legislator click here or see list below http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp
2. Call all CT state senators (try for as many you can, it goes very quickly)
3. Ask friends, relatives, businesses related to CT that you know to do the same
4. Calls are more effective than emails, but if you absolutely cannot call, then email
5. We need to overwhelm their offices with polite but firm requests (see sample below). We need the Senators to realize that vested interests are controlling Lyme disease. 

SAMPLE BLURB: Please copy and paste the blurb if you email this to a Senator, do not send the entire Alert

Dear Senator,

I am calling to tell you that I want H.B. 6200, the Lyme bill, brought to the Senate floor for a vote today!  H.B.6200 protects physicians' rights to determine the most appropriate treatment protocol for Lyme patients. 

There are currently 2 sets of evidence-based guidelines to treat Lyme patients, yet doctors are being brought up on charges if they do not follow the IDSA guidelines, which were determined by the CT Attorney General to be made by a panel with a huge amount of vested interest. The May 2009 issue of   peer-reviewed Journal of Medical Ethics  published a table showing 5 of the physicians who made up the panel and listed conflicts of interest which include patents, insurance company disability reviews, testing, vaccines, and expert witness in malpractice cases.

CT had the highest per capita instance of Lyme in the country in 2007  (87.3/100,000) despite changes made to State reporting which have lowered Connecticut's numbers.

Don't allow vested interest to control our health and that of our families.  We need help now, today.

Our own CT Medical Society supports this bill; Lyme patients support this bill; the CT House supports this bill. Put the bill up for a favorable vote in the Senate today.

Name

Address & Phone (please be sure to mention you are from their district when calling your own senator)

Senators that are co-sponsoring the bill are marked in red

NAME	TOWN	PHONE	EMAIL
Boucher, Toni	Bethel, New Canaan, Redding, Ridgefield, Weston, Westport, Wilton	800-842-1421 203-762-3232	Toni.Boucher@cga.ct.gov
Caligiuri, Sam	Cheshire, Waterbury, Southington, Wolcott	800-842-1421	Sam.Caligiuri@cga.ct.gov
Colapietro, Thomas	Bristol, Harwinton, Plainville, Plymouth	860-240-0475	Colapietro@senatedems.ct.gov
Coleman, Eric	Bloomfield, Hartford, Windsor	860-240-5302	Eric.Coleman@cga.ct.gov
Crisco, Joseph	Ansonia, Beacon Falls, Bethany, Derby, Hamden, Naugatuck, Woodbridge	800-842-1420	Crisco@senatedems.ct.gov
Daily, Eileen	Chester, Clinton, Colchester, Deep River, E Haddam, E Hampton, Essex, Haddam, Lyme, Old Saybrook, Portland, Westbrook	800-842-1420	Daily@senatedems.ct.gov
Debicella, Dan	Monroe, Seymour, Shelton, Stratford	800-842-1421 203-225-0558	Dan.Debicella@cga.ct.gov
DeFronzo, Donald	New Britain, Berlin, Farmington	860-240-0595	DeFronzo@senatedems.ct.gov
Doyle, Paul	Cromwell, Middletown, Newington, Rocky Hill, Wethersfield	860-240-0498	Doyle@senatedems.ct.gov
Duff, Bob	Norwalk, Darien	800-842-1420 203-840-1333	Duff@senatedems.ct.gov
Fasano, Leonard	Wallingford, North Haven, East Haven	800-842-1421 203-234-2371	len.fasano@cga.ct.gov
Fonfara, John	Hartford, Wethersfield	860-240-0043	Fonfara@senatedems.ct.gov
Frantz, L. Scott	Greenwich, New Canaan, Stamford	800-842-1421	Scott.Frantz@cga.ct.gov
Gaffey, Thomas	Cheshire, Meriden, Middlefield, Middletown	800-842-1420	Gaffey@senatedems.ct.gov
Gomes, Edwin	Bridgeport, Stratford	800-842-1420	Gomes@senatedems.ct.gov
Guglielmo, Anthony	Ashford, Chaplin, Coventry, Eastford, Ellington, Hampton, Pomfret, Strattford, Tolland, Union, Vernon, Willington, Woodstock	800-842-1421	Anthony.Guglielmo@cga.ct.gov
Handley, Mary Ann	Bolton, Glastonbury, Manchester, Marlborough	800-842-1420	Handley@senatedems.ct.gov
Harp, Toni	New Haven , West Haven	800-842-1420	Harp@senatedems.ct.gov
Harris, Jonathan	West Hartford, Bloomfield, Burlington & Farmington	860-240-0567	Harris@senatedems.ct.gov
Hartley, Joan	Naugatuck, Prospect & Waterbury	800-842-1420	Hartley@senatedems.ct.gov
Kane, Robert	Bethlehem, Bridgewater, Middlebury, Oxford, Seymour, Southbury, Thomaston, Roxbury, Watertown, Woodbury	800-842-1421	rob.kane@cga.ct.gov
Kissel, John	East Granby, Granby, Enfield, Somers, Suffield, Windsor, Windsor Locks	800-842-1421 860-745-0668	John.A.Kissel@cga.ct.gov
LeBeau, Gary	East Hartford, East Windsor, Ellington, South Windsor	860-240-0511	LeBeau@senatedems.ct.gov
Looney, Martin	New Haven, Hamden	800-842-1420	Looney@senatedems.ct.gov
Maynard, Andrew	Griswold, Groton, North Stonington, Plainfield, Preston, Sterling, Stonington, Voluntown	860-240-0584	Maynard@senatedems.ct.gov
McDonald, Andrew	Stamford, Darien	800-842-1420 203-348-7439	McDonald@senatedems.ct.gov
McKinney, John	Newtown, Easton, Weston, Fairfield	800-842-1421 203-254-1639	John.McKinney@cga.ct.gov
McLachlan, Michael	Bethel, Danbury, New Fairfield, Sherman	800-842-1421	Michael.McLachlan@cga.ct.gov
Meyer, Edward	Branford, Durham, Guilford, Killingworth, Madison, North Branford	800-842-1420	Meyer@senatedems.ct.gov
Musto, Anthony	Bridgeport, Monroe, Trumbull	800-842-1420	Musto@senatedems.ct.gov
Prague, Edith	Andover, Bozrah, Columbia, Franklin, Hebron, Lebanon, Ledyard, Lisbon, Montville, Norwich & Sprague	800-842-1420	Prague@senatedems.ct.gov
Roraback, Andrew	Brookfield, Canaan, Cromwall, Goshen, Kent, Litchfield, Morris, New Milford, North Canaan, Salisbury, Sharon, Torrington, Warren, Washington, Winchester	800-842-1421 860-491-8617	Andrew.Roraback@cga.ct.gov
Slossberg, Gayle	Milford, Orange, West Haven	800-842-1420 203-878-6412	Slossberg@senatedems.ct.gov
Stillman, Andrea	East Lyme, Montville, New London, Old Lyme, Old Saybrook, Salem, Waterford	800-842-1420	Stillman@senatedems.ct.gov
Williams, Donald	Brooklyn, Canterbury, Killingly, Mansfield, Putnam, Scotland, Thompson, Windham	800-842-1420	Williams@senatedems.ct.gov
Witkos, Kevin	Avon, Barkhamsted, Canton, Colebrook, Granby, Hartland, Harwinton, New Hartford, Norfolk, Simsbury, Torrington	800-842-1421	Kevin.Witkos@cga.ct.gov

For wording on the bill, please go to Click here: AN ACT CONCERNING THE USE OF LONG-TERM ANTIBIOTICS FOR THE TREATMENT OF LYME DISEASE. or if that does not work

http://www.cga.ct.gov/ HB6200 (file # 903)

Thank you.

Lyme Disease Association, Inc.
Newtown Lyme Disease Task Force
Ridgefield Lyme Disease Task Force
Time For Lyme, Inc.
Eastern Connecticut Chapter, Lyme Disease Association