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 Lyme Activism in NY

Patients who have Lyme doctors with practices in New York have lobbied the NYS Legislature for over 7 years now.  The first thing we did was to convince legislators to hold public hearings.  These November 27, 2001 and January 31, 2002 hearings served to gain strong support for chronic Lyme patients.  This year, the plan is for patients to tell their stories and it will be very good to re-emphasize our plight, to let legislators know that we still need their commitment to help us.  In 2008, our focus is on creating friendships and raising awareness.

HISTORY: 

In the past, we focused on the following issues, taken from our talking points of 2007:

Doctors who don't follow the cookbook approach regarding diagnosis and treatment as dictated by the IDSA (Infectious Diseases Society of America) are considered to be Lyme knowledgeable, Lyme friendly, Lyme educated or Lyme literate.  These doctors recognize the fact that much more research and proof via actual case studies are necessary before the determination, if ever, of any one specific treatment.  Lyme physicians look to treat Lyme patients until the patient is well, and if necessary, they include aggressive and long term treatment, as per ILADS Guidelines. (International Lyme and Associated Diseases Society)  

The heretofore unchecked power of the IDSA * the situation for ILADS doctors is that insurance companies and state disciplinary boards have unfairly taken sides.  The OPMC has investigated and in some cases, charged LLMDS with medical misconduct. These actions could result in the loss of LLMDs licenses, simply for treating chronic Lyme disease.  The chilling effect of this harassment on Lyme literate doctors has made it extremely difficult for Lyme disease patients to find medical care. With the handing down of the recent 2006 Guidelines by the IDSA, the situation has worsened. *  We need OPMC REFORM legislation to deter harassment of physicians treating chronic Lyme disease.  Providing due process for our NY doctors will help all patients, no matter where the Connecticut CID investigation leads.

 

*Nov 2006 - Connecticut Attorney General, Richard Blumenthal is calling for an investigation of the IDSA for their Guidelines on the Treatment of Lyme disease.  Attorney General Richard Blumenthal subpoenaed the IDSA, launching a CID investigation into what Blumenthal said could "severely reduce choice for patients and physicians in diagnosis and treatment thereby violating the anti-trust laws that protect consumers."

 

December 2004 NYS Senate finally passed the OPMC Reform bill in 2004. (NYS Assembly had passed the OPMC Reform Bill every year)  However, despite significant pressure to sign the bill, Governor Pataki vetoed it.

 

The effort to get this bill passed and SIGNED is why we are lobbying on May 2, 2007!!!

 

6/9/2003 Assembly bill A.4274a is passed.

 

5/23/2003 Senate companion bill S.5221 to Assembly bill is introduced by James Seward.

 

5/29/02 Health Committee chairman, Senator Kemp Hannon's neglect on the issue of OPMC misbehavior over Lyme disease, spurs Lyme patients to protest outside his office.

 

5/24/02 OPMC Reform Bill is introduced in the NY Senate as S.7466 by Senator William Larkin.

 

514/02 Assembly OPMC Reform bill A.11330 passes Health Committee Vote.

 

4/22/02 NYS Assembly Resolution passes by unanimous floor vote - with over 103 sponsors from both sides of the isle -- a remarkable bipartisan feat.

 

4/22/02 Dr. Burrascano receives decision by the Administrative Review Board. The ARB affirms that the OPMC was prosecuting a bias in a medical science dispute and not misconduct. (Decision available on the OPMC website) Please note: Unlike other cases, Dr. B's was allowed to present medical literature into evidence that justified his method. This evidence very much influenced the panel, which points to the need that in addition to other measures, one way we must reform the OPMC process law is to include that medical literature evidence is allowed in all OPMC hearings.

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