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Vermont Lyme Doctor Protection Bill Signed Into Law

Over vehement objections by the Vermont Board of medical practice and others, Vermont Governor Shumlin signed Act 134 (Click here to read Act 134) into law on May 22, 2014. The law directs the Board to adopt a policy statement stating they will not discipline licensees based solely on their long-term antibiotic treatment practices in accordance with Lyme guidelines issued by the International Lyme & Associated Diseases Society (ILADS). Shortly after the law was signed, the Board complied by issuing a Board Policy (Click here to read Board Policy) which included language on what the licensee may be disciplined for while practicing within those guidelines.




NYS Assembly Passes Lyme Legislation

Cheers to Assemblymember Didi Barrett, this is fabulous news. It passed in the NYS Assembly 133 to 0 (7 absent)! Next is the Senate, We will need your help with this; TOGETHER WE ARE POWERFUL!

Jill Auerbach
Hudson Valley Lyme Disease Association, Chairperson


New Yorkers, contact your NYS senator (automatic letter writing campaign coming soon)

Legislation to Improve the Care of Lyme Disease Patients Passes Assembly 

May 13, 2014
BarrettDidiAssemblymember Didi Barrett (D-Hudson) announced that legislation she authored that authorizes physicians to prescribe long-term antibiotic therapy to a patient with symptoms of chronic Lyme disease has passed the Assembly (A.7558-A). The legislation garnered bipartisan support and unanimously passed the chamber.

“The number of cases of Lyme and other tick borne disease has reached crisis proportions, and yet the treatment remains mired in misconception,” said Assemblymember Barrett. “Patients deserve the best course of care possible, and my bill allows doctors to prescribe vital, long-term antibiotics to their patients if they see fit without any fear of disciplinary action.”

The Hudson Valley has become the epicenter of the Lyme disease epidemic in the Northeastern United States. Patients with Lyme disease should have the same rights as those with other diseases. They must have the right to be seen and treated by the practitioner of their choice, have the right to be informed that there are differing professional judgments about the appropriate care for Lyme disease, and to participate in the choice of treatment as it pertains to their circumstance and preference. The rights of the patient hinge upon the availability of the practitioner to act in the best interest of the patient without fear of reprisal from the professional discipline system when more than one set of guidelines exists.

“Physicians should not face disciplinary actions for treating patients who show symptoms of Lyme disease but test negative,” said Assembly Health Committee Chair Richard N. Gottfried. “Lyme is an extremely complex illness to test for, and symptoms vary among patients. While it is important for healthcare providers to follow rigorously-developed evidence, it is also important to recognize that innovation and disagreement are essential to the progress of medicine.”

“Serious tick-borne illnesses continue to increase and spread in New York State with no end in sight,” said Jill Auerbach, Chairwoman of the Hudson Valley Lyme Disease Association. “We applaud Assemblywoman Barrett for daring to tackle this serious medical situation for both patient and physician.”

In addition to passing legislation, Assemblymember Barrett recently authored and passed a resolution proclaiming May 2014 as Lyme Disease Awareness Month. Lyme Disease Awareness Month provides an opportunity to focus on these complex illnesses, to provide information on and raise public awareness of its causes, effects, and treatments, and to underscore important education and research efforts surrounding Lyme and tick-borne diseases.




Hearing on Massachusetts Lyme Bill

Lyme Disease Patients Push For Health Coverage – 22 News WWLP.com

Speliotis Files Bill to Require Health Insurers Expand Coverage for Lyme Disease – DaversPatch

Press Release – MA Lyme Legislative Task Force

Written Testimony – Pat Smith, LDA President

MA SpeliotisMA Rep. Theodore Speliotis, Bill H.989 SponsThe Massachusetts Joint Committee on Financial Services has announced a hearing on H.989, An Act Relative to Lyme Disease Treatment Coverage, on Wednesday, November 13, 1:00-4:00 at the State House in Boston, Room A2. This bill will require that insurance companies cover open-ended antibiotic treatment for Lyme disease when prescribed by a physician.

Advocates ask that you attend the hearing, send written testimony, speak at the hearing, if you are able. Tell them:
Where in Massachusetts you are from.
Your personal story, briefly, on how Lyme has effected you or your loved ones.
The cost of Lyme (personally and economically) to you and your family.

This part is important, as this hearing is before the Financial Services Committee. If you were denied your physician-prescribed treatment by your insurance company, please tell the Committee so!

If your senator or representative is also a member of the Financial Services Committee, please speak with that person before the hearing. Our elected state officials need to know that Lyme disease is serious and costly, long term treatment can be essential, and many patients are being denied this treatment by their insurance companies.

Even if you do not plan on speaking or submitting written testimony, please come! Just your presence there sends a message that this bill is important. Let’s pack the hearing room!

If you are planning on speaking, you will be limited to 3 minutes. Since we don’t want to put the chairman in the awkward position of having to cut you off, please prepare your remarks in advance (3 minutes is about a single spaced page). Practice reading or reciting what you will say, and time yourself.

To send your written testimony, please email it to lymebill@gmail.com or fax it to Trish McCleary at 774-241-0071.




Maine Lyme Bill 416-597 Signed Into Law

Thanks largely to the efforts of MaineLyme, a non –profit, and primary sponsor Representative Sheryl Briggs, on June 24, 2013, Main Governor LePage signed the Lyme bills into law (Chapter 340). In April, the LDA wrote in support of the bills and requested inclusion as a resource on the Maine website. The law now includes the Lyme Disease Association website as a resource. Some of law text below:

1. Lyme disease may be difficult to diagnose and treat;
2. Some patients seem not to respond to the usual antibiotics used for treating Lyme
disease and seem to have post-treatment Lyme disease syndrome. There are some
doctors who believe that longer doses of antibiotics may sometimes be helpful. Some
patients believe that they have benefited from extended treatments of antibiotics;
3. Antibiotics can be lifesaving medications but can have serious side effects, such as
the development of drug-resistant organisms. A patient who contracts an infection from a
drug-resistant organism may never fully recover;
4. A negative result for a Lyme disease test does not necessarily mean that Lyme
disease is not present and if symptoms continue, the patient should contact a health care
provider and inquire about the appropriateness of retesting or additional treatment; and
5. Information on treatment alternatives for treating Lyme disease is available
through Internet websites of organizations, including, but not limited to, MaineLyme,
Lyme Disease Association, the Mayo Clinic, the National Institutes of Health and
WebMD.

Click here for bill text

Click here for LDA letter to Maine legislators

2013-06 ME Bill(L to R) Rep. Sanderson, Bill Whitten (lobbyist and patient) Sally Jordan 12 yr, Lisa Jordan, Susan Holmes, Governor LePage, Happy Dickey RN, Rep. Sheryl Briggs (original Sponsor) Diane Farnum, Rhonda Buker, (both initiators of the bill), Rep. and Rep. Johnson (patient). Dr. Beatrice Szantyr is missing from this picture but was a huge factor in bill’s success. Photo Courtesy MaineLyme.org.




Lyme Awareness Press Conference

2013-05 SmithPressConfPatTo raise awareness about Lyme & other tick-borne diseases in New Jersey, the NJ based national non-profit Lyme Disease Association, Inc. (LDA), in cooperation with Congressman Christopher H. Smith (NJ-4), hosted a press conference on Tuesday, April 30. In a press conference packed with TV, radio, and print media from throughout New Jersey, Congressman Chris Smith (NJ-4) spoke about his federal Lyme bills (HR 610, HR 611) to establish a federal tick-borne diseases advisory committee and to provide much needed funding for Lyme and other tick-borne diseases research to combat their spread throughout the country. Jim Occi, MA, MS, from University of Medicine & Dentistry, a member of LDA’s Scientific & Professional Advisory Board, featured a poster of three types of ticks that produce much of the disease in New Jersey, the deer tick, lone star tick, and American dog tick. He explained their three stages, larvae, nymph, and adult, and how they feed at each stage on people and other animals. Pat Smith, LDA President, presented LDA programs, including research grants awarded by LDA. She then broke out the case numbers and underreporting issues, problems with testing, costs, and highlighted the problems of children with Lyme in the schools. Michael Meddis, MPH, Monmouth County Public Health Coordinator and George Newberry, Wall Township Committeeman and Former Mayor, also spoke. A number of Lyme patients and advocates also attended.

Congressman Smith Opening Remarks


Coverage From Press Conference

Congressman Chris Smith (NJ-4)
Marking Lyme Disease Awareness Month
Congressman Smith, LDA, UMDNJ and local officials promote prevention, research, treatment

nj.com – Congressman urges action on Lyme Disease legislation, says more research needed

NJ 101.5 – Lyme Disease Remains Major Issue In NJ [AUDIO]

APP.com Asbury Park Press – Smith urges comprehensive approach to Lyme disease


LDA Press Release

April 29, 2013

FOR IMMEDIATE RELEASE

Press Conf. Set for Tuesday, April 30 @ 1 pm – Public Invited

Lyme Disease Awareness Month Kick Off

New Jersey-3rd in nation in Lyme case numbers, children at highest risk
To raise awareness about Lyme & other tick-borne diseases in New Jersey, the NJ based national non-profit Lyme Disease Association, Inc.(LDA), in cooperation with Congressman Christopher H. Smith (NJ-4), is hosting a press conference on Tuesday, April 30 @ 1 pm – Public Invited.

The event will take place at the Wall Township N.J. Municipal Building, on Tuesday, April 30, 2013, at 1:00PM . Address is 2700 Allaire Rd, Wall, NJ 07719 (behind the Wall police station and Wall library). Click here for directions. The following individuals will be present to speak and answer questions:

Congressman Christopher H. Smith, co-founder and co-chair of the Congressional Lyme Disease Caucus, will discuss federal legislation on Lyme and tick-borne diseases and the work he has been doing in Washington to prevent the spread of Lyme disease, which the CDC says is on the rise and is still underreported. CDC ranks NJ as 3rd in Lyme case numbers.

James Occi, MA, MS is a Research Teaching Specialist at the University of Medicine and Dentistry of New Jersey whose expertise in microbiology and medical entomology has spanned 20 years. His expertise in tick-borne diseases began as a MS thesis collecting and identifying ticks and analyzing them for infectious agents by PCR and fluorescent antibody. As an offshoot of this work, he developed a seminar for the lay public as well as health-care professionals and lectured extensively throughout the state for years. Jim is on LDA’s professional and scientific advisory board. He will discuss ticks and prevention

Patricia V. Smith has been president of the Lyme Disease Association, Inc. (LDA) for 16 years. She is former chair of the NJ Governor’s Lyme Disease Advisory Council, and testified last year in DC at the Lyme hearing in the US House of Representatives Foreign Relations Global Health Subcommittee chaired by Congressman Smith. Children are at the highest risk for acquiring the disease and she has been an advocate for children with Lyme, utilizing her experience as former president of the Wall Board of Education. She will discuss the spread, research, and impact upon patients. www.LymeDiseaseAssociation.org

 




Lyme Press Conference – Public Invited

April 29, 2013

FOR IMMEDIATE RELEASE

Press Conf. Set for Tuesday, April 30 @ 1 pm – Public Invited

Lyme Disease Awareness Month Kick Off

New Jersey-3rd in nation in Lyme case numbers, children at highest risk
To raise awareness about Lyme & other tick-borne diseases in New Jersey, the NJ based national non-profit Lyme Disease Association, Inc.(LDA), in cooperation with Congressman Christopher H. Smith (NJ-4), is hosting a press conference on Tuesday, April 30 @ 1 pm – Public Invited.

The event will take place at the Wall Township N.J. Municipal Building, on Tuesday, April 30, 2013, at 1:00PM . Address is 2700 Allaire Rd, Wall, NJ 07719 (behind the Wall police station and Wall library). Click here for directions. The following individuals will be present to speak and answer questions:

Congressman Christopher H. Smith, co-founder and co-chair of the Congressional Lyme Disease Caucus, will discuss federal legislation on Lyme and tick-borne diseases and the work he has been doing in Washington to prevent the spread of Lyme disease, which the CDC says is on the rise and is still underreported. CDC ranks NJ as 3rd in Lyme case numbers.

James Occi, MA, MS is a Research Teaching Specialist at the University of Medicine and Dentistry of New Jersey whose expertise in microbiology and medical entomology has spanned 20 years. His expertise in tick-borne diseases began as a MS thesis collecting and identifying ticks and analyzing them for infectious agents by PCR and fluorescent antibody. As an offshoot of this work, he developed a seminar for the lay public as well as health-care professionals and lectured extensively throughout the state for years. Jim is on LDA’s professional and scientific advisory board. He will discuss ticks and prevention

Patricia V. Smith has been president of the Lyme Disease Association, Inc. (LDA) for 16 years. She is former chair of the NJ Governor’s Lyme Disease Advisory Council, and testified last year in DC at the Lyme hearing in the US House of Representatives Foreign Relations Global Health Subcommittee chaired by Congressman Smith. Children are at the highest risk for acquiring the disease and she has been an advocate for children with Lyme, utilizing her experience as former president of the Wall Board of Education. She will discuss the spread, research, and impact upon patients. www.LymeDiseaseAssociation.org

 




NH – HB 1326 Doctor Protection Bill

HB 1326 Doctor protection (Gary Daniels)
5 hour hearing on bill
NH Medical Society against bill

February 17, 2010Awaiting action in Senate
New Hampshire Lyme bill passes the NH House as amended
http://www.gencourt.state.nh.us/legislation/2010/HB1326.html

SENATE EXECUTIVE DEPARTMENTS AND ADMINISTRATION
Bill was in fight to amend. Died. (Advocates did not want amendment)




Pennsylvania Residents Weigh In Please

The survey was created by the Pennsylvania Lyme Disease Advisory Committee (PLDAC), which is a collaboration between the Farm Bureau, Lyme Disease Association of Southeastern Pennsylvania (SEPA), an LDA affiliate, and the Chester County Health Department. The Health Department is using their own statistical experts to analyze the data, the results of which should be available in March.

The committee is dedicated to educating residents on the risks, prevention, symptoms, and treatment options of Lyme disease and promoting federal and state legislative initiatives that provide funds for research and treatment of Lyme disease and protection of physicians.

Results from the survey will be used to educate policymakers about the true impact of Lyme disease in the daily life of Pennsylvania residents and help further educate residents about the disease.

This survey is open to the general public, is fully anonymous and takes 5-10 minutes to answer. Deadline for responding is February 29, 2012.

 http://www.zoomerang.com/Survey/WEB22EBCM9VSTD

Please contact Casmir Martin at cmartin@chesco.org or Andrea LeFever at alefever@chesco.org for any questions or comments.




An Act Relative to Tick-Borne Illnesses

MA Bill HB 4480: Would establish a special commission for the purpose of investigating and studying the incidence and impacts of Lyme disease and its associated co-infections in the commonwealth

Status: New draft of HB 1148 and HB 3592 (02/08/2010);
referred to the Joint Committee on Health Care Financing (02/08/2010).

2/8/2010 House Reported from the committee on Public Health
2/8/2010 House New draft of H1148 and H3592
2/8/2010 House Reported favorably by committee and referred to the committee on Health Care Financing
5/20/2010 House Committee recommended ought to pass with an amendment, substituting therefore a bill, see H4683
5/20/2010 House Bill referred to the committee on House Steering, Policy and Scheduling
6/28/2010 House Discharged from committee
6/28/2010 House Referred to the committee on HOUSE RULES with the amendment previously recommended pending

MA 2009 H3592 An Act Relative to Tick Borne Illnesses

Formed ???

For an investigation by a special commission (including members of the General Court) of Lyme disease and other tick borne illnesses




Virginia Announces Lyme Task Force

Virginia Secretary of Health and Human Resources, Dr. Bill Hazel, announced on October 15, 2010, the creation of a task force to explore prevention and treatment of Lyme disease. It will bring recommendations and information to the Governor regarding Lyme disease and the diagnosis, prevention, public education, medical treatment, and will also consider the impact of Lyme disease on children. The new statewide Lyme disease task force held its first meeting in Purcellville Nov. 30, 2010