The Lyme Wars are Not Over for Patients & Treating Physicians

Almost a decade ago, Lyme advocates in Minnesota, pursuing Lyme doctor protection legislation, settled for a compromise from the State Medical Board which  issued a Moratorium taking action against doctors who treat long term. The Moratorium was reviewed and extended in 2014, while awaiting more research on the topic.

According to the Minneapolis Star Tribune, this week the Board decided to reinstate sanctions on doctors who choose to treat long term.
 
Lyme Disease Association president, Pat Smith addressed the reinstatement: “This is a decision that is a blow for Lyme patients in Minnesota and the Lyme community at large. It exemplifies the fact that opposition to recognizing chronic Lyme and the treatment often necessary for its victims is alive and well. We have looked to the government for answers, but although it has begun to be more cooperative with patient advocates and treating physicians, it has still not acknowledged the problem of chronic Lyme disease, despite 427,000 cases of Lyme in the US in 2017. Statistics indicate 15-20% or more of Lyme patients may develop chronic disease. The lack of government acknowledgement has enabled the Infectious Diseases Society guidelines to prevent those with chronic Lyme from receiving necessary treatment, since doctors who use clinical judgement and treat out side ‘guidelines,’  may find themselves being sanctioned, as has happened throughout the US in the past. “
 
Minneapolis Star Tribune Article



Dr. Robert Bransfield’s Speech to Harrisburg Bill Rally

 

Read below or Click here for Dr. Robert Bransfield’s Speech  – Pennsylvania HB629 Rally

 

2019_PennsylvaniaHB629_Bransfield




Illinois Governor Signs Law Expanding Insurance Coverage for Lyme Disease Treatment

On August 12, 2019, Illinois Governor, JB Pritzker, signed House Bill 889 into law which will expand insurance coverage for Lyme Disease testing and treatment. According to the Governor, this new legislation has been greatly needed and is a big step forward in protecting children and families throughout the state.

Tick-borne illnesses have been on the rise throughout Illinois since 2004, and have had an especially devastating effect on working-class farming communities.

“Many are losing their homes, their businesses and their pensions to try and pay for continued treatment,” said Illinois Lyme Association Director Jennifer Russell. “This legislation provides them with desperately needed options.”

The new law will be a great source of support for families who have struggled to pay for the high costs of continuous treatments often associated with long-term recovery. “State government ought to be standing up for working families … Expanding health care coverage is one important way to help lower costs and build a higher standard of living for all Illinoisans,” said Governor Prizker.

Sources:
week.com
http://ilga.gov
www2.illinois.gov

Lyme Disease Association, Inc. has not yet reviewed this legislation.

 



Congressional Town Meeting Weathered the Storm

Pat Smith, Lyme Disease Association President, is shown with US Congressman Chris Smith (R-NJ); C. Ben Beard, Deputy Director, Division of Vector-Borne Diseases Center for Disease Control and Prevention, Dr. Richard Horowitz, Internist in Private Practice in New York  at Congressional Town Hall Meeting. Photo by Joyce Scatuccio Jolliffe

On May 29, 2019, The Lyme & Tick-Borne Diseases Congressional Town Meeting Sponsored by Congressman Christopher H. Smith (NJ-4) was held in the Wall Township, NJ, Municipal Building. Despite tornado warnings, flash flood warnings with torrential rains, a packed house of more than 200 people attended the three and a half hour event.

Wall Mayor Kevin Orender gave opening remarks on the seriousness of Lyme followed by Congressman Chris Smith discussing the spread of Lyme and tick-borne diseases and the difficulties of getting legislation passed to try to prevent disease and to help get research monies for patients who have difficulty getting diagnosis and treatment. He showed a stack of bills he has authored over two decades for Lyme disease. Dr. Ben Beard, Deputy Director , CDC Division of Vector-Borne Diseases, spoke on “Tick-Borne Diseases in the US: Burden, Trends, & What You Can Do To Protect Yourself.”  Dr. Richard Horowitz, Internist in Private Practice in New York, provided “Updates in the Diagnosis & Treatment of Lyme & Chronic Disease.”  Pat Smith, President, Lyme Disease Association, Inc.,  presented “Lyme & Tick-Borne Diseases: Their Spread, The Ticks, & Government Activity.”

Question & Answer session followed. View all Congressional Town Hall presentations on Rep. Smith’s website 

More Lyme information from Congressman Smith:
News 12 NJ – Rep. Smith: Federal funding for tick-borne diseases is a ‘joke’

Asbury Park Press (Jerry Carino)Lyme disease a bioweapon gone awry? Rep. Chris Smith pushes Trump to investigate

Video: News 12 NJ

Video: Asbury Park Press




Lyme & Tick-Borne Diseases Congressional Town Meeting

The Lyme & Tick-Borne Diseases Congressional Town Meeting will be held Wednesday, May 29, 2019 from 6:45pm-930pm at the Wall Township Municipal Building Community Room, 2700 Allaire Rd, Wall Township, NJ.  The town meeting is sponsored by US Congressman Christopher H. Smith. Hear from nationally-recognized Lyme disease experts about current efforts to combat Lyme and Tick-Borne diseases, updates on diagnosis and treatment, and how to protect yourself and your family, and more.  LDA president, Pat Smith, will join US Congressman, Christopher H. Smith; CDC, Deputy Director, Division of Vector-Borne Diseases, Ben Beard, PhD; and Richard Horowitz, MD as speakers at the meeting.  Seating is limited, and advanced registration is required.  To register click here, or visit ChrisSmith.House.gov.

 




DE Legislature Declares Lyme Awareness Month

Delaware Legislature Declares Lyme Awareness Month

By passing Delaware House of Rep. Concurrent Resolution #79, the Delaware legislature declared May 2016 as Lyme Disease Awareness month. The legislature sent the resolution to the Lyme Disease Association, a provision included in the resolution, which has posted it here online. Rep. Schwartzkopf and Rep. D. Short are the Hourse sponsors and Sen. Lopez is the Senate sponsor. Thank you Delaware legislators! Click Here for DE Resolution




LDA State Legislation & Action Table Updated

phoca thumb l 2002 145The Lyme Disease Association Inc. (LDA) has been working for 28 years to stop the spread of Lyme and TBD and to find a cure for chronic Lyme disease. LDA has educated multi-state officials from legislators to governors to health departments and continues to work with county and local officials who often are looking for ways to control tick-borne diseases in their specific areas, which may be more heavily endemic than the state at large.
 
LDA has also worked with other Lyme groups across the US in many states to develop, pass, and implement state legislation when other actions have not succeeded. In this table, you can view some legislative efforts across the US and perhaps find ideas to use in your state. Some actions have been successful, some not. Situations vary among states and legislation can be a long and dangerous road to take so embarking on it should be carefully considered.
 
Link to table
Link to LDA testimonies
Link to Legislative Advocacy



State Activities

A-USA

Colorado 

Connecticut 

Delaware

Kansas

Maine  

Georgia

Maryland

Illinois 

Massachusetts 
Minnesota  
New Jersey  
New Hampshire  
New York  
Oregon   
Pennsylvania  
Rhode Island 
Vermont

Virginia

West Virginia

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




Illinois Passes Doctor Protection Legislation

Illinois lawmakers vote unanimously to override Gov. Bruce Rauner’s veto on a bill proposed to protect physicians from possible discipline for aggressively treating Lyme disease. The bill requires the establishment of a Lyme disease task force as well as a statewide Lyme disease prevention and outreach program. Click here for the article

 




Senate Approves $1 Million Investment To Combat Lyme Across New York State

nys senate logo224x224FOR RELEASE: Immediate, Tuesday, June 19, 2018 http://www.nysenate.gov  SENATE APPROVES $1 MILLION INVESTMENT TO  COMBAT LYME ACROSS NEW YORK STATE  Historic Levels of Funding Build Upon the Senate’s Commitment to Increasing Public Awareness, Treatment, and Prevention of Lyme and Other Tick-Borne Illnesses. The New York State Senate today approved a resolution to provide a record $1 million to help fight the scourge of Lyme and other tick-borne diseases (TBDs) throughout the state.

nys senate logo224x224FOR RELEASE: Immediate, Tuesday, June 19, 2018
http://www.nysenate.gov

SENATE APPROVES $1 MILLION INVESTMENT TO 
COMBAT LYME ACROSS NEW YORK STATE
Historic Levels of Funding Build Upon the Senate’s Commitment to 
Increasing Public Awareness, Treatment, and Prevention of Lyme and Other Tick-Borne Illnesses

The New York State Senate today approved a resolution to provide a record $1 million to help fight the scourge of Lyme and other tick-borne diseases (TBDs) throughout the state. The new funding will help support a wide variety of local investments identified by the Senate’s Task Force on Lyme and Tick-Borne Diseases to increase education, research, prevention, and treatment options, and combat the ongoing increase in TBDs throughout New York.

The Senate Majority – and specifically the Task Force – led the charge in securing this historic level of funding in the 2018-19 state budget. Based on the Task Force’s recommendations, the final budget restores $400,000 in Executive Budget cuts and includes $600,000 in new funding for a total of $1 million.

Senator Sue Serino, Chair of the Task Force on Lyme and Tick-Borne Diseases, said, “With the State Senate successfully securing an unprecedented $1 million in this year’s budget to bolster awareness, prevention and research initiatives, we are sending a strong message to New Yorkers who have spent years grappling with the devastating impacts of Lyme and tick-borne diseases. This critical funding will play a direct role in helping us to combat the spread of Lyme and TBDs in the state, and with the Hudson Valley sitting at the epicenter of this epidemic, I am especially proud to have secured funding that will go directly to our local community. I thank Senator Kemp Hannon, Chair of the Senate’s Health Committee, who has partnered with me to continue building momentum on this important issue. Working together with partners at all levels, we can ensure that New York has an effective statewide action plan in place to empower patients and better protect residents against the scourge of Lyme and TBDs.”

Senator Kenneth P. LaValle (R-C-I, Port Jefferson) said, “I am pleased that the Senate was able to secure $1 million for Lyme and Tick Borne Disease (TBD) funding. My colleagues and I fought hard to secure this funding, recognizing the importance of fighting the spread of Lyme and TBD’s throughout the state. My district is particularly hard hit, especially on the East End of Long Island. This money will allow for the continuation of the highly successful Tick Borne Disease Center at Southampton Hospital, a four poster program on Shelter Island directly targeting the spread of ticks from the deer population, and the creation of a new state-of-the-art infectious disease lab at Stony Brook University.”

Senator Betty Little (R-C-I, Queensbury) said, “I represent a beautiful region of New York State and we want people outdoors, enjoying nature.  But the fear of contracting Lyme Disease is increasingly a deterrent and that’s a shame. My experience is that the statistics of reported cases fall short of what is actually happening.  A mere mention of Lyme disease among a group of people and you immediately hear horror stories of misdiagnosis and costly long-term treatments. The good news is we are making progress and the Senate task force is playing a major role. We’ve secured funding and spearheaded legislation. We have taken our direction from the public we serve, from those leading the effort to improve diagnosis and treatment and from the incredible insight of patients themselves. This additional funding will make an impact in the North Country and I am very grateful to have helped secure it as part of this year’s budget.”

Highlights of the resolution passed today include:

·        Cary Institute of Ecosystem Studies, Inc. – $192,000 to research community-based prevention methods by continuing and expanding “The Tick Project,” a five-year research project. The funding will help determine whether neighborhood-based prevention can reduce human cases of Lyme and other TBDs.
·        Stony Brook University – $175,000 to open a state-of-the art infectious disease laboratory, which will have an insectary dedicated solely for work on ticks. The laboratory will be open to Stony Brook scientists and others as a regional facility with unique research capabilities. The funds will be used to support activities in the laboratory and new research on TBDs.
·        Cornell University – $130,000 to study the distribution of ticks and the diseases they carry in various parts of the state through the Tick Outreach and Surveillance Project for New York. Run through the New York State Integrated Pest Management (IPM) Program at Cornell University, the research will primarily focus on the spread of ticks by species within certain counties. Other areas of study include ways to reduce human exposure to TBDs, tick management workshops, and best practices in schools, camps, parks, and places where people gather outdoors.
·        New York State Association of County Health Officials (NYSACHO) – $112,000 to increase public awareness throughout New Yorkthrough eight to 10 regional educational lectures. The informational seminars will focus on community awareness, best practices for TBD investigation, tick surveillance, and disease prevention to local parts of the state heavily impacted by the effects of Lyme and TBDs.
·        SUNY Adirondack – $100,000 for laboratory research on lesser-known TBDs, including infectious diseases known to be comorbid with Lyme disease, such as Babesia, Bartonella, Ehrlichia, Anaplasma, and Powassen virus. The work would help provide much needed information about the rates of these coinfections in people with Lyme disease in New York.
·        Southampton Hospital – $75,000 to fund the Tick-Borne Disease Resource Center, which helps doctors in multiple disciplines collaborate with researchers and community outreach experts to inform and treat individuals from across the region.
·        New York State Department of Health – $60,000 to increase the number of tick collection sites in New York, and the number of ticks tested for pathogens statewide. The funding will also be used to hire temporary staff to assist with sampling and testing, as well as targeting of educational messages in a more efficient manner.
·        SUNY College of Environmental Science and Forestry – $50,000 to monitor seasonal variations of ticks in Western and Central New York to help provide a better understanding of how disease transmission risks are changing. The study will also provide public information to better explain the risks of tick exposure.
·        Paul Smith’s College – $30,000 to study the emergence of TBDs in the North Country by continuing and expanding academic studies that monitor ticks and TBDs.
·        Cornell Cooperative Extension – $26,000 for a series of regional Lyme and TBD forums to be hosted throughout the state. The forums will help provide the public with information on tick identification, tick bite prevention, Lyme disease and co-infection awareness, impact on pets and livestock, and health resources that are available for individuals who have been bitten by a tick.
·        New York State Department of Health – $25,000 to continue database mining, which would include various projects associated with Lyme carditis, as well as deaths associated with Lyme and other TBDs.
·        Town of Shelter Island – $25,000 to help combat the spread of ticks on Shelter Island, which is one of the worst hit areas of the public health crisis. The town has developed a four-poster program to stem the spread of ticks associated with the deer population. The town has built and installed four-poster stations, to remove ticks from deer across the Island, and this funding would maintain and expand the efforts of this critical initiative.

In addition to the $1 million announced today, the Senate was instrumental earlier this year in passing a package of bills aimed at combating Lyme and TBDs, based on the recommendations of the Senate’s Task Force on Lyme and Tick-Borne Diseases.

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