More can and should be done to reduce the prevalence of Lyme disease and related conditions.

  
As you should know, Pa is once again on the top of the list reporting new cases of Lyme disease.
Over eleven thousand, nine hundred new cases of just Lyme disease were reported in 2017. The CDC estimates these numbers to be ten times what is being recorded.
We agree the numbers are not accurately reflected since Susquehanna County only shows 129 on the CDC reports. When we polled local facilities in August of 2017 there were well over 400 reported to the CDC and the fall incidence were not included in our numbers. Apparently, all the reported cases were not included in the CDC numbers or did not fit their criteria.
CRITERIA NEED TO CHANGE!
Pa Lyme disease task force, born from Act 83 of 2014, came out with recommendations in a report issued in 2015. In 2018, Governor Wolf proposes funding to combat Lyme disease and in 2019 passes a budget that includes Lyme disease along with other vector-borne diseases that are to coincide with suggestions from the report issued four years earlier.
During those four years, studies from several of the state universities have been released raising new concerns which should change the scope of funding to be more diversified to include patient care as well as vector control.
REPORTS NEED UPDATING MUCH FASTER AND FUNDING NEEDS TO BE MORE DIVERSIFIED!

A brief overview of what has happened since the 2015 release of the state recommendations;
ESU published a report finding other pathogens in the larva tick which we had once believed did not carry pathogens. These new pathogens are not being tested in humans and could be part of the reason persistent infections continue. Funding was issued to ESU for FREE tick testing to further these studies, but nothing changed for the patients suffering from Lyme and possible other tick-borne diseases.

PSU also released another article indicating the years they have been studying ticks, the types, and the pathogens they carry, which also reported new species of ticks not previously under scrutiny.

Drexel University concludes their tick collection to help identify ticks and the pathogens they may transmit using comprehensive high-resolution testing able to detect all bacteria inside of ticks—not just Lyme disease and the pathogens we already know. Results from this have not yet been published.

BU our northern neighbor also has been studying ticks, human behavior, and now has started a Lyme patient-centered “Lyme and Other Tick-borne Disease Research Center” with goals of research discovery, risk assessment, optimization of treatment and management, and public health intervention and prevention. Currently hosting a patient bio-bank for urine and serum samples to be used in studies, as well as a community tick drag surveillance study targeting residential areas.
Johns Hopkins another neighboring state, has released several publications providing evidence of persistent or chronic Lyme bacterial infection, which has been the source of much debate whether it is a persistent infection or just lingering symptoms left after treatment which they call Post Lyme Disease Syndrome. Patients finally have validation of Persistent Lyme Disease.  Another study just recently published for the treatment of patients with a cocktail of three antibiotics used for therapy clears the infection in mice and now needs approval and funding to start human trials.
Other areas of positive results are with vector control.
The use of 4 poster stations, bait boxes, tick tubes and sprays to name a few, have also been studied and reported to show effectiveness.
In 2017, a report was published by Schulze TL, et al. J Med Entomol, with findings from a NJ study, another of our neighboring states. This study showing bait boxes and tick tubes used for vector control, with 87.9% and 97.3% control of host-seeking nymphs in treatment sites.
Another study published by Dolan MC, et al. J Med Entomol. 2017, shows the effectiveness of vector vaccine being used to stop the transmission of the bacteria being passed on with effectiveness of 61 – 96% reduction in small mammals and pathogens. Other studies showed similar results.
As you can see funding has been directed to ticks and the study of migration, pathogens, and species, which needs to continue with new pathogens and species being found consistently, however, funding also needs to be much more diversified. Funding needs to include not only surveillance of the vectors but also human studies, education for behavioral changes, education for physicians to clinically diagnose patients due to a lack of good reliable human testing, as well as vector control management to help prevent the spread of further disease.
With the release of funding from our state going mainly to education and surveillance, more can be done at savings to the taxpayers.

In 2018 PaLyme Resourse Network received funding for an educational prevention program, which targets groups with information on how to help prevent tick bites, later to have the funding for the delivery of the presentations cut due to a conflict in CDC criteria. When the CDC utilizes old outdated information supplied mainly through the IDSA, we need to back up education that supports updated information that can be substantiated in a much faster fashion.  
Other groups have submitted educational opportunities for a younger age group and told by the PADOH that they were working with PaLyme.
Again, a more diversified approach needs implementing so that the work done is not repeated, taken advantage of, and delivered in a timely manner.
 
Vector Surveillance & Control
Funding used for surveillance should extend to include implementing vector control immediately following tick drags while in the area which would save money in additional travel back to these sites. It would also provide the basis of a better surveillance system in repeating the drags at timed intervals, thereby offering even more evidence for studies on not only the prevalence of tick species, the pathogens they carry and can possibly transmit, but also which treatments are working to reduce the vector and/or pathogens they carry.  This method would also reduce the risk to humans not only by reducing the vectors and pathogens they carry but also risks of repeated vaccine failures to humans when they can be applied to other hosts.
Human Surveillance and Control
The CDC now keeps records of most states and the prevalence of new reported cases of Lyme and some, not all TBD, and not all states are included.
The criteria need changing to include clinical diagnosis while there are no valid sensitive testing procedures for humans.
Patient studies performed with the data already being supplied digitally in patient files with the patients’ permission can be added to a database and followed to show what treatments are being used and which are showing promise to elevate symptoms while a search for a cure is being worked on.
Compiling the data already in databases across the county would also save not only funding, but also risks to patients could also be avoided, by accessing this data. Data utilized in such a study would need to allow patients to view what is in their records to ensure accuracy as many appointment questions are either, by-passed and automatically filled in with default answers or incorrectly entered.
Education for Physicians as well as the general public
Physician training utilizing the most up to date data available needs implementing immediately with a clinical diagnosis until proper highly sensitive human testing can be provided.
(Bulletins can be supplied as new treatment and diagnosis are published, as well as the National Guidelines Clearing House guidelines added to the DOH web page)
Information needs to be given to patients who present symptoms to follow and be followed up on. (Education to the public supplied in the same manner as diets and blood pressure information is)

Presentations and/or curriculum developed and implemented in schools can aid in prevention with human behavioral changes as well as prevention tips and symptoms to watch for.
Support
Support of organizations developing and implementing educational, preventative, and even surveillance information should be awarded, instead of competing and repeating work already done by volunteers again saving taxpayer funds. The purpose behind non-profits is to alleviate government responsibilities.
The task forces and offices of the government would be much better served, in a capacity of reviewing and supporting what other organizations have already done. I.e. Office of oversight to review what organizations develop and ensure the information is valid and has supporting documentation as well as being current, with the most current being supported with personnel and funding.
 
 
 
Legislation
State
PA HB629 currently on the floor needs to be supported and immediately implemented to provide patients access to affordable clinical diagnosis as well as insurance coverage.

HB96-Introduced January 28, 2019- Providing for continuing education in Lyme and tick-borne diseases for health care professionals
SB181-  Introduced Feb. 8, 2019 -  Providing for continuing education in Lyme disease and related tick-borne diseases for health care professionals.
(Both are similar, so pick one and let's get it passed)
SB182-  Introduced and referred to Education Feb. 1, 2019 -  Amending the act of March 10, 1949 (P.L.30, No.14), entitled "An act relating to the public school system, including certain provisions applicable as well to private and parochial schools; amending, revising, consolidating and changing the laws relating thereto," in school health services, further providing for health services. (This act contains more language for the instruction given to parents)
*While PA is offering FREE tick testing and may need additional funding, schools should also save and send the tick in, directly* Please add verbiage to include this as part of the school health services.
DO NOT SUPPORT HR89!
We do not and will not support this bill due to the issues of past vaccines until proper reliable sensitive human testing can prove to exclude vaccines and still provide a proper diagnosis.
Replace human with other mammal hosts and we may support it as being a source of vector control.
 
Federal

May 18, 2018 -HR 5878 the National Tick-Borne Diseases Control and Accountability Act, Introduced to create a new structure—the Office of Oversight and Coordination for Tick-Borne Disease—this office would oversee efforts by the U.S. Department of Health and Human Services (HHS) to prevent and treat Lyme disease. The office would also be charged with ensuring collaboration between various departmental efforts to improve research, surveillance, testing, treatment and public education of Lyme and related conditions.
**This bill needs some tweaking along with remedying the TBDWG who has now removed patients and advocated from being heard**

Immediate changes need to be implemented on behalf of the patients to bring back what was to be a “good faith” gesture to help bring patients back to trusting health care and government officials with the TBDWG. The process of removing patients and advocates is unacceptable.
 

5/23/2019 S.1657 - Kay Hagan Tick Act (Renamed after the passing of, due to tick-borne illness)

To provide assistance to combat the escalating burden of Lyme disease and other tick and vector-borne diseases and disorders.
1/05/2019 Placed on Senate Legislative Calendar under General Orders. Calendar No. 287.  (All Actions)
A summary is in progress.

We urge you to support and advanced ACTION in the prevention and control of Lyme and related TBD.
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