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.

 




State Activities

A-USA

Connecticut 

Delaware

Georgia

Illinois 

Kansas

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

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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May 2018 Declared Lyme Disease Awareness Month

LDA Proclamation 2018States and counties throughout the US have proclaimed May Lyme Disease Awareness Month.

Many states and counties have taken steps to raise awareness regarding Lyme and tick-borne diseases.  Declaring “May Lyme Awareness Month” is one move to help remind people spring is here, ticks are out, prevention & proper education are your best tools to staying healthy.

Proclamations are issued by governors and resulutions are adopted by the legislature.  The LDA salutes and thanks all the governors, legislators, Lyme groups, and advocates who have helped raise awareness throughout the year.  Your efforts make a difference!

See if your state has joined in May Lyme Awareness & Read the state proclamations.

States and counties throughout the US have proclaimed May Lyme Disease Awareness Month.

Many states and counties have taken steps to raise awareness regarding Lyme and tick-borne diseases.  Declaring “May Lyme Awareness Month” is one move to help remind people spring is here, ticks are out, prevention & proper education are your best tools to staying healthy.

Proclamations are issued by governors and resulutions are adopted by the legislature.  The LDA salutes and thanks all the governors, legislators, Lyme groups, and advocates who have helped raise awareness throughout the year.  Your efforts make a difference!

We thank our neighbors to the North for joining in the efforts to prevent the spread of Lyme.

Please click on your state to see what has been done.

Arkansas New York
Colorado Oregon
Maine Virginia
North Carolina Vermont
New Hampshire Nova Scotia – Halifax
New Jersey Nova Scotia – Pictou

Lyme Disease Association, Inc. Proclamation

LDA Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 


House Resolution Introduced by US Rep. Faso

House Faso Lyme Resolution(Click picture for pdf)

 

 

 

 

 

 

 

 


Arkansas Proclamation

AR Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 

 

 


Colorado

CO Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 


Maine Proclamation

ME Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 

 

 


North Carolina Proclamation

NC Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 

 

 


New Hampshire Proclamation

NH Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 

 

 


New Jersey

State of NJ Joint Resolution Occurring Each Year

NJ Joint Resolution Each Year(Click picture for pdf)

 

Manchester County Proclamation

NJ Manchester Cnty Lyme Proclamation 2018b(Click picture for pdf)

 

 

 

 

 

 

 

 


New York

NY State Legislative Resolution

NY Lyme Resolution 2018(Click picture for pdf)

 

NY Erie County Resolution

NY Erie Cnty Lyme Resolution 2018(Click picture for pdf)


 

Oregon Proclamation

OR Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 

 


Virginia Loudoun County Resolution

NH Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 

 


Vermont Proclamation

VT Lyme Proclamation 2018(Click picture for pdf)

 

 

 

 

 

 

 

 


Nova Scotia – Canada

Halifax Proclamation

NovaScotia Halifax Proclamation 2018(Click picture for PDF)

 

 

 

 

 

 

 

 

 

Pictou Proclamation

NovaScotia Pictou Lyme Proclamation 2018(Click picture for PDF)




Sen. Schumer Press Conference on TBD $$$; LDA President A Speaker

 

2018 05 SchumerPC 1 MedPodium (L-R) Sen. Charles Schumer – NY, Pat Smith, LDA

US Senator Chuck Schumer (NY) , Senate Minority Leader, invited LDA President Pat Smith to speak at a press conference he hosted in Woodbury, NY on May 2, 2018. The focus of the conference was to ensure that government monies on Lyme and tick-borne diseases reach those officials at the state and local level who can best ensure the monies are used to help fight tick-borne diseases.

Remarks by Patricia Smith, President Lyme Disease Association, Inc.
Trailview State Park, Woodbury, NY May 2, 2018

Before I begin, I need to say that although I am a public member (one of 7) of the 14 member Tick-Borne Disease Working Group under HHS in DC, I am not speaking today on behalf of the Working Group but as President of the national non-profit Lyme Disease Association, Inc.

Lyme, the most prevalent vector-borne disease in the US, is found in over 80 countries worldwide. CDC indicates that only 10% of Lyme cases are reported, thus in 2016 alone, 360,000+ new cases of Lyme disease probably occurred in the US.

Information reported by CDC yesterday indicates over a 13 year period:
• Reported cases of tick-borne diseases (TBD) more than doubled—(2004 to 2016),
• TBD made up 77% of all vector-borne disease reports,
• Lyme disease made up 82% of all TBD case reports,
• NYS is in the top 20% of states in disease cases reported from ticks.

The range of ticks is spreading nationwide, and they now carry a whole host of TBDs which can complicate diagnosis and treatment. Many of us in the Northeast have noted a year round threat as the ticks become active and search for a blood meal when temperatures rise above freezing. Right here on Long Island, 3 main ticks are instrumental in causing diseases in humans, and one tick bite can produce a multitude of diseases.

• Waiting on low lying vegetation for you to brush by, the deer tick may bite and infect you with Lyme, Borrelia miyamotoi, babesiosis, anaplasmosis, maybe even Powassan virus, which has no known treatment, a 10% fatality rate, and serious neurologic complications for half its survivors.

• Going after you more aggressively, the lone star tick may bite and infect you with Lyme-like STARI, which has no known cause or available test; or ehrlichiosis, tick paralysis and even alpha gal allergy that causes serious allergic reaction to red meat, which you may then need to remove from your diet.

• Often minimized in tick education, the American dog tick may give you ehrlichiosis, RMSF, tularemia, and perhaps tick paralysis.

The deer tick, which can be as small as a poppyseed, is hard to see and hard to properly remove once it bites you. It has fish hook like barbs and it secretes a cement like substance to glue itself onto you and blood thinners to help it feed, and it can inject all the organisms inside it into you if you squeeze its body while removing it. This tiny tick can transmit a bacterium that wreaks untold havoc: dozens of doctors, years of treatment, lost income, piles of unpaid medical bills, and lost months/years of school time, since our children are at some of the highest risk of getting Lyme disease. Research studies indicate 15-34% or more of Lyme patients may become chronic.

Lyme is serious. It can enter the central nervous system within hours of a tick bite. It can hide in the skin & joints, evade the immune system, and change into forms not eradicated by conventional antibiotics. It can cross the placenta to the fetus, and it can cause sudden death in patients due to cardiac involvement. Lyme can attack every system in the body and can mimic many other conditions including MS, ALS, Chronic Fatigue, Fibromyalgia, Parkinson’s, Alzheimer’s, and even an autism-like condition, reversed with treatment.

Research and education against tick-borne diseases require a monetary commitment commensurate with the severity of Lyme and the growing number of TBDs in the US, currently about 20 diseases. The federal government needs to step up to the plate and provide monies for Lyme & tick-borne diseases in congressional appropriations.

Remember, Lyme disease does not discriminate, nor does it confer immunity—another bite, another possible infection. It does not require any risky behavior beyond walking the dog, jogging, playing on the backyard swingset or birdwatching in this beautiful natural environment. The only thing standing between us and Lyme disease is the power of significant new monies to unlock the secrets of these insidious tick-borne diseases and to curb the spread of the ticks now threatening us, our families and our pets. Thank you, Senator Schumer, for continuing to be a leader in Washington in this battle to provide monies and to ensure those monies reach the state and local levels to make families safe here on LI, in NYS, and across the nation from the growing threat of TBDs.  After 44 years of Lyme disease we still do not have a gold standard and we don’t have a test to check for active infection and this is a disgrace and we all need to work together in order to ensure this money get to the people in the trenches who best know how to use the money.

2018 05 SchumerPC 3 MedBridget Fleming, Suffolk County Legislator, 2nd District (see tick warning sign)

Click here for Senator Schumer Press Release

See News Videos Below

http://abc7ny.com/health/schumer-urges-cdc-to-unlock-funds-for-tick-borne-diseases/3419592/

https://www.nbcnewyork.com/on-air/as-seen-on/Urgent-Warning-Ahead-of-Tick-Season_New-York-481547201.html

http://www.fox5ny.com/news/tick-borne-diseases-funds

http://pix11.com/2018/05/02/more-warm-days-bring-greater-risk-of-disease-from-bugs-schumer-calls-for-action/

 




Testimonies to Kansas Senate Committee on Public Health and Welfare

Several Lyme disease advocates in Kansas have been working for several years with Kansas Senator Carolyn McGinn on a draft of a bill to protect doctors who treat Lyme disease with long-term antibiotics. Senator McGinn asked the head of the Kansas Senate Committee on Public Health and Welfare to hold a hearing on Lyme disease, and Lyme disease advocates were invited to give testimony. The hearing took place on March 20, 2018.

Sen. McGinn gave the first speech. Kathy White, Peggy Blumhagen, and her daughter Veronica Blumhagen spoke about the problems Lyme disease patients face in Kansas. This was an informational hearing in preparation for introducing a bill next year which would enable patients in Kansas to receive long-term antibiotic treatment if needed.

The testimonies can still be heard at http://sg001-harmony.sliq.net/00287/Harmony/en/PowerBrowser/PowerBrowserV2/20180320/1/3750.

Click here for Written Testimony of Kathy White, Kansas City Lyme Association




NYS Senator Seward Calls for Study of Link Between Lyme & Mental Health

 

2018 NYS Sen James SewardNew York State Senator James SewardThe following excerpts are from New York State Senator James Seward’s Press Release:

ALBANY, 03/29/18 — State Senator James L. Seward (R/C/I/Ref-Oneonta) joined this week with his senate colleagues to call on the state to investigate the impact Lyme and tick-borne diseases (TBD) may have on mental health. The senate unanimously passed legislation (S.7171) co-sponsored by Senator Seward that would require the state to study the link between infectious diseases, blood-borne pathogens and mental illnesses. The bill is the first step in a process that could lead to a better understanding of the incredible impact these diseases can have on the overall health of New Yorkers.

In August of 2017, Senator Sue Serino, chairman of the Senate’s Task Force on Lyme and TBDs (of which Senator Seward is a member) and Senator Kemp Hannon, chairman of the Senate Health Committee, held a comprehensive public hearing to look critically at the state’s response to the Lyme and TBD epidemic. It was there that testimony was given by patients, public health experts and mental health professionals that indicated that psychiatric symptoms related to Lyme and TBDs could directly impact quality of life and long-term health of patients if not properly addressed. Patients described battles with mood disorders, anxiety, depression and other mental health related issues. However, witnesses also testified that because health care providers and advocates may not immediately connect mental health issues with the emergence of these diseases, too often these symptoms go unchecked or are ultimately attributed to other causes leading to ineffective treatment and stigmatization.

“The Senate Task Force on Lyme and Tick-Borne Diseases has performed groundbreaking work and helped focus the spotlight on tick-borne illnesses,” said Senator Seward. “We know more today than ever before about these debilitating ailments and are making strides in prevention and treatment. Studying Lyme in relation to mental health is a logical step forward that can lead to improved diagnosis and treatment plans that can improve patient outcomes in the short- and long-term.”

Click here for the full press release

Click here to Download Bill Text and for more info