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Rhode Island Lyme Resolution Passed by Senate

The RI Resolution S0711  introduced by Senator Stephen Archambault (RI 22-D), which was amended on the floor, requests the RI Department of Health to increase public awareness of Lyme activities that expose people to ticks, educate on symptoms of Lyme and importance of early detection, and to update physician protocols with regard to early detection and treatment.

The resolution notes that delayed treatment can lead to more severe and persistent symptoms that are more difficult to treat. It points out Chapter 37.5 of title 5 provides for insurance coverage for the treatment of Lyme disease. This is in reference to a law that the Lyme Disease Association Inc. worked on in Rhode Island with the newly formed Lyme Disease Association Rhode Island Chapter to achieve its passage in 2004.

No mention was made of the law the Lyme Disease Association and Rhode Island  advocates had gotten passed in 2002 preventing the RI Medical Board from prosecuting physicians for long term treatment.

The newly passed Resolution is now in effect.


2021- S0711 as amended (PDF)

https://legiscan.com/RI/text/S0711/2021

See info on steps in passage of Resolution

https://legiscan.com/RI/bill/S0711/2021




Maryland Department of Health Warns Doctors About Lyme

In a letter to physicians, the Maryland Department of Health (MDH) warns doctors to pay attention to Lyme which is the most frequently diagnosed tick-borne disease (TBD) in Maryland residents (1400 cases 2019). The MDH also cautions them to report other TBDs, which it specifically names. The letter also points out the similarities of Lyme symptoms to COVID 19 symptoms and reminds providers of obligation to report the required TBDs.

Tick bite prevention tips are offered, and a Maryland Tick Identification Service is provided in the letter. https://health.maryland.gov/phpa/OIDEOR/CZVBD/Pages/Tick-Identification.aspx

Read full letter here  

Read more LDA articles on Maryland here




Current Lyme Reporting in Non-Endemic States Needs Tick-Bite Reporting

Data from a survey of respondents with self-reported tick bite encounters who concurrently reported a clinical or serological Lyme disease (LD) diagnosis from non-endemic states for Lyme disease was published in the journal Healthcare, June 21, 2021.  Focusing on Texas, which due to large size, diverse climate, and ecological conditions, reflects environments that promote ticks, the scientists compared data from the self-reported LD patients with county-level confirmed cases of LD from the Centers for Disease Control & Prevention (CDC), and from serological canine reports. CDC has characterized states as low-incidence or non-endemic for Lyme, including Texas.

The findings indicated that “tick bite reports accurately overlapped with the geographic patterns of those patients previously known to be CDC-positive for serological LD and with canine-positive tests for Borrelia burgdorferi, anaplasmosis, and ehrlichiosis, as well as within neighboring counties and ecological regions. LD patient-reported tick bite encounters, corrected for population density, also accurately aligned with official CDC county hot-spots.”

Human LD cases that meet CDC surveillance criteria are compiled and reported. However, no agency or organization tracks LD cases from patients who do not meet CDC criteria. The CDC publishes LD cases by county, but the data is not always captured by county of exposure. Some cases may have been acquired during travel and not locally acquired in the county of diagnosis. 

Some patients diagnosed with LD will have co-infections from other tick-borne diseases (TBDs) —  “…the CDC and many states do not provide human TBD data at the county level for use in research or analysis.”  The lack of this data available, coupled with a difficult-to-diagnose disease such as LD underscore the importance of using patient self-reported disease and official counts of disease as “epidemiological tools when disease can be linked to an event, such as a tick bite,” even though these methods are not widely used methods of surveillance.

“Tick-Borne Surveillance Patterns in Perceived Non-Endemic Geographic Areas: Human Tick Encounters and Disease Outcomes” by Sarah P. Maxwell, Connie L. McNeely, Kevin Thomas, and Chris Brooks indicates the following, “A finding of self-reported LD cases (via clinical or serological diagnosis), supported by known tick bites in CDC-positive ecological regions (eco-regions), provides an indicator that patient-reported LD and CDC-confirmed cases are strongly tied. This study uses county level, human, canine, and ecological data, providing an investigative snapshot of geographic overlap in Texas.”

Read full article here

More information on Diagnosis by Geography here (LDA website)

Read CDC Lyme Surveillance Criteria here

 

 




Congressman Gottheimer: Lyme Press Conference on Fed. Leg.– LDA Pres. Speaks

Rep. Josh Gottheimer & Pat Smith, LDA President at Press Conference, West Milford, NJ

Congressman Josh Gottheimer (NJ-5-D) held a press conference to discuss Lyme disease and three bi-partisan bills currently introduced into the House of Representatives. He spoke about the seriousness of the disease in NJ and in his district and of the need for funds to help with diagnostics and new treatments and help for the patients suffering from persistent symptoms. 

LDA President Pat Smith was asked to speak at the press conference on June 10, 2021 in West Milford, NJ, and discussed her personal family involvement with Lyme and tick-borne disease and how the LDA has been active in Washington fighting for help for patients which includes the establishment of the HHS Tick-Borne Disease Working Group, where she served for four years, and the recent introduction of the Children Inflicted by Lyme Disabilities Act, CHILD Act 2021 (HR 3636), for which LDA initiated and helped in development of the language.
 
The CHILD Act 2021 was introduced in the house by Lyme Caucus Co-chair Congressman Christopher Smith (NJ-4-R) and co-sponsored by Congressman Gottheimer and Congressmen Henry Cuellar (TX-28-D), Bill Posey (FL-8-R), and Brian Fitzpatrick (PA-1-R).  The purpose of the bill is “To amend the Individuals with Disabilities Education Act (IDEA to recognize more clearly that Lyme disease can cause disabilities that affect the education of children and to enhance educational services and related services for children with Lyme disease and other tick-borne diseases and for other purposes.” Children can have manifestations including cognitive impairment, mental confusion, memory loss, headaches, difficulty concentrating, speech difficulty, visual and hearing problems, dizziness, mood swings, outbursts, depression, sleep disturbance, OCD, and seizure activity, all of which affect their educational experience. Read LDA article on the Bill
 

Patients and family members & advocates with Pat Smith, LDA, at the Press Conference

Congressman Gottheimer also co-sponsored HR3637, introduced by Smith, authorizing HHS to be able to launch prize competitions for research. HHS and the Alexandra and Stephen Cohen Foundation have formed a public private partnership, LymeX, which will host competitions. The idea is based on the successful KidneyX program.  The LDA is on the webinars group for LymeX working to develop more trust with government and more ways to implement strategies for new research.

 
Congressman Gottheimer also co-sponsored The Stamp Out Lyme Act introduced by Antonio Delgatto (NY-19-D) which would provide a stamp to benefit Lyme research. The bill has 11 co-sponsors including Smith. The LDA worked on earlier versions of this bill in a prior Congress.
 

“Lyme disease can be brutally debilitating, hard to detect and treat, and cause real long-term health issues. It’s a problem that we must try to solve,” said Congressman Josh Gottheimer. “The federal action I’m announcing today will boost investment for Lyme disease research, incentivize the development of new treatments, and amend federal law to accommodate the health impairments that can be caused by Lyme disease in children, so they can receive the specialized education and care they need.”

Pat Smith at Podium. Photo Credit: Doreen Edwards, Tick Squad

“It is imperative that we get help for the thousands of sick Lyme patients — 29% are children. We need Congress to act quickly to not only provide money but to ensure the monies are actually being used to help Lyme and tick-borne disease patients by providing cutting edge diagnostics and treatment therapies for the 20+% who remain sick after a short course of antibiotics. I thank Congressman Gottheimer and the House Lyme Disease Caucus for their continued efforts in this area,” said Pat Smith, President, Lyme Disease Association Inc.

Several Lyme patients and family members spoke about their struggle with Lyme disease. Advocate Dorreen Edwards from Tick Squad in Sussex County spoke on the need to provide more education for schools and for health care providers. LDA partnered with the Tick Squad in 2019 to present a Lyme conference at Sussex County Community College in 2019. Read LDA article on Conference

Terry Duffy, Commissioner, Board of County Commissioners, County of Passaic and Don Weise, New York – New Jersey Trail Conference, also spoke on the issues surrounding Lyme disease.

Watch video of entire press conference on facebook.


 

 




May, Lyme Disease Awareness Month

HELP US! This page is in progress — a full list of any resolutions submitted will be posted at the end of May with your help. Please contact your state, county or local governing body and ask them to pass a May resolution to spread the word about Lyme & tick-borne diseases. Check on your governing body website to see if there is a place listed to submit a request.

Click here to submit your state or county proclamation/resolution to LDA for inclusion on this page.


2021 May Lyme Awareness Proclamations

Many states and counties take steps to raise awareness regarding Lyme and tick-borne diseases during May. 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 resolutions are adopted by the legislature. The LDA salutes and thanks all the governors, legislators, Lyme groups, and advocates who help raise awareness throughout the year. Your efforts make a difference!

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

New Jersey

Texas

Colorado

Click images for pdf versions

NJ Governor Proclamation – May 2021 as TBD Awareness Month

Tick Awareness Proclamation 2021 (Lyme Disease)

State of NJ Joint Resolution Occurring Each Year

NJ Joint Resolution Each Year

Resolution above is from the NJ state legislature declaring every May Lyme Disease Awareness Month.

City of Richardson, Texas Proclamation Signed by the Mayor

Colorado Proclamation Signed by the Governor

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 




Submit 2021 May Awareness Proclamations / Resolutions

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 resolutions 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! 

Please submit an image of your state or county proclamation/resolution so we can include it on our annual list.

Any questions, email jennifer@lymediseaseassociation.org

Click here for 2021 list (in progress)

Click here for 2018 list


2021 May Awareness Proclamations

  • Drop files here or
    Accepted file types: jpg, gif, png, pdf, jpeg, Max. file size: 32 MB, Max. files: 3.

     

     




    U of Maine Seeks Citizen Scientists

    As a follow-up to its 2020 report from its 2020 citizen science project, the Maine Forest Tick Survey at the University of Maine is recruiting forest landowners in nine southern and coastal Maine counties to begin sampling for ticks in July 2021 when tick nymphs become active. The 2020 project collected 1643 ticks, and 445 of those blacklegged nymphs were tested for pathogens. 25+% were carrying Borrelia burgdorferi, 7% anaplasma phagocytophilum, and 5% Babesia microti.  Information on the Survey and how to volunteer can be found https://umaine.edu/forestticksurvey/  or by contacting citizen science coordinator elissa.ballman@maine.edu

    For more information

    Read full article here 

    Forest Tick Survey Here 




    Persistent Lyme Symptoms: A Survey of RI patients

    In a recent study conducted by Vargas et al., patients suffering from self reported post-Lyme treatment symptoms at the Lifespan Lyme Disease Center in Rhode Island took part in completing both a demographic and medical survey, the Patient Reported Outcomes Measurement Information System (PROMIS)-29 v2.0, and other short-form PROMIS measures of cognitive function, sleep disturbance, and fatigue.

    Findings from this sample of patients showed that this group of patients reported more severe symptoms than the general population as well as reporting higher than other clinical sample groups including cancer patients and chronic pain patients, and for symptoms of fatigue, women reported higher than men. 

    Read the full text article here

    Read more on persistent Lyme symptoms here.

     

     




    Lyme Activities by State

    The section contains articles of individual state activities and multi state activities related to government actions or patients’ or advocates’ action to legislate or educate. Click on the picture of your state or click on USA for multistate actions or information.

    A-USA

    California

    Colorado 

    Connecticut 

    Delaware

    Florida

    Georgia

    Illinois 

    Kansas

    Maine  
    Maryland
    Massachusetts 
    Minnesota  

    Missouri

    New Hampshire  
    New Jersey  
    New York  
    Oregon   
    Pennsylvania  
    Rhode Island 
    Vermont

    Virginia

    West Virginia

     

     

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    Missouri Tick Study: Citizen Tick Submissions Requested

    Photo by J. Occi, PhD (cand.), Rutgers Univ.

    The Missouri Department of Conservation (MDC) and A.T. Still University are partnering on a Missouri tick study. This two-year research study is designed to better understand the distribution and species of ticks as well as the pathogens that they carry throughout Missouri. The study will run from April 2021 through September 2022.

    During that time, MDC and the University are asking for citizens of Missouri to collect, save, and mail ticks that they encounter to A.T. Still University. To learn more about the research, submission directions, or to submit questions online visit atsu.edu/ticks.

    Read full MDC news release here.

    For additional LDA articles on tick and tick-borne disease studies/clinical trials visit here.

    NOTE: The Lyme Disease Association, Inc.(LDA) thanks Lyme Association of Greater Kansas City (LAGKC) for this information. LAGKC is an affiliate partner of the LDA.