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LDA NEWS & UPDATES 
August 2020
Contentious 9 Hour Working Group Meeting
Persistent Infection a Religious Belief?
Working Group Co-Chair Says - YES!
At the meeting itself,  Working Group Co-Chair, Dr. David Walker, and Member Eugene Shapiro made and seconded many motions to remove material from the proposed draft report including the two sets of guidelines, shared decision making, access to care, Lyme treatment trials, and cost of Lyme disease. There was also a discussion in which Shapiro and Walker wanted to remove Lyme mouse model studies and other animal studies that showed persistence that were included in the draft report, saying animal models were really not a good use for this infection. 

Dr. Walker said there is “ emphasis on belief…almost religious belief that it’s a persistent infection ”  and at various times said they probably didn’t have Lyme to start with. After many hours of this discussion, no other WG members would second the motions for removal.

Pat Smith Describes Pre-Meeting Effort to Minimize Lyme on the Record
LDA President Pat Smith, a public member of HHS TBD Working Group read (slightly compressed) into the record at the Working Group (WG) meeting on July 8 about the potential WG Chapter report for which she was responsible, the only one addressing patient issues. 89 written comments/deletions to the report had been suggested before the meeting by Working Group members including many proposed deletion of Lyme disease material.  She detailed the process of how chapters were drafted and what she felt were irregularities.       Read Pat Smith's comments "For the Record"
Series of Amendments Go Through Process to Increase Lyme/TBD CDC $$$
In a complex government process, the *Tick Act ─ a bill that provides funding for Vector-Borne Diseases including Lyme ─ was not fully funded according to the  Committee report on HHS . The Committee report has 16M for Lyme and 38M for vector-borne diseases. 
 
To address the issue, Congressman Chris Smith (NJ-4) developed an amendment to raise that funding for TBD, which was co-sponsored by Congressman Collin Peterson (MN-7). During amendment development, the President’s budget request for 2021 was examined, which asked for $14 million increase over 2020 for vector-borne diseases.
Congressman Christopher Smith pitching the funding amendment to the Rules Committee.
Also part of the development process, suggested funding levels in the Tick Act for vector-borne diseases were also examined. The LDA provided input into that amendment process and concurred with an additional $11.4M to be asked for on top of the $2M increase in appropriations asked for in the report. Congressmen Smith and Peterson submitted the amendment for $11.4M, but Congressman Delgado (NY) also submitted an amendment, asking for $4M. The Congressmen agreed on $4M in an amendment, Smith et al # 289.

Amendment # 289. Smith, Christopher (NJ), Peterson (MN), Stefanik (NY), Delgado (NY), Rose, Max (NY) does the following: Redirects $4 million from General Departmental Management at the Department of Health and Human Services to Emerging Zoonotic and Infectious Diseases at the Centers for Disease Control, for Lyme Disease and other Vector-Borne Diseases.

House Report 116-461 , the Rules Committee Report on HR 7167, with amendments made in order, including the Chris Smith amendment. A description of the Smith amendment (289) is on page 33 of the pdf, and the actual language is on page 365 of the pdf. 

*NOTE: as LDA has mentioned in prior information on the Tick Act, it is for Vector-Borne Diseases of which TBD are only a part

Congressman Smith (NJ-4) introducing the Biowarfare Investigation Amendment
The House voted last week to pass a number of amendments to the NDAA, National Defense Authorization Act, including a Chris Smith/Collin Peterson amendment, # 587 —The Comptroller General of the United States shall conduct a review of whether the Department of Defense experimented with ticks, other insects, airborne releases of tick-borne bacteria, viruses, pathogens, or any other tick-borne agents regarding use as a biological weapon between the years of 1950 and 1977.  

H.R. 6395 - National Defense Authorization Act for Fiscal Year 2021
The Bill and passed amendments such as this one has now moved to the conference committee where the House and Senate will work to decide what language goes into the final product. The LDA provided input into the amendment language and has been working to get Senators to champion the inclusion of this GAO (Government Accountability Office) Investigation Amendment into the final bill.  
 
Said LDA president Pat Smith: “We thank Congressmen Smith & Peterson for championing this investigation. Lyme and tick-borne diseases (TBD) patients and the public are entitled to know the truth about what past government research may reveal not only about the documented tick releases along the Atlantic bird flyway but also about research on the mysterious ‘Swiss agent’ which Dr. Willy Burgdorfer identified as a new Rickettsia strain in his work for the US Government– at Rocky Mountain Labs and in Switzerland.  Perhaps it may uncover clues to help stop this epidemic of tick-borne diseases.”

There is information in various publications that such biowarfare activities did occur, especially in the book “Bitten” by Kris Newby – a science writer at Stanford University—a book, which explores the evidence through actual government documents and interviews with some researchers who were involved that document such experiments.  


From LDA President Pat Smith’s Blog:
What has happened to one of the best Women’s National Basketball Association (WNBA) players is no surprise to the Lyme Disease Association or hundreds of thousands of chronic Lyme patients. Elena Delle Donne, of the Mystics, has been denied by the WNBA league’s panel of physicians as having a health exemption due to being at high risk for COVID 19, thus unable to be paid for exemption status if she does not play the upcoming season. She had a letter from her personal physician who confirmed her high risk status as she has suffered from Lyme for many years, and the team doctor deferred to that physician’s appraisal.

Apparently, the league’s physician panel's decision was based on the CDC’s list of people of any age with certain underlying medical conditions are at increased risk for severe illness from COVID-19. The  CDC medical conditions list   does not include Lyme .

Spanish LymeR Primer
The Lyme Disease Association (LDA) announces the publication of its Spanish LymeR Primer (LP) . The English LP has been around for more than two decades with countless numbers distributed throughout the US to the public, schools, government, businesses, and health care providers. It contains information on 20 tick-borne diseases and conditions in the US and 7 ticks that transmit them. The English Primer can be ordered online in quantity for postage or downloaded and printed for free. The Spanish Primer is only downloadable from the website at this time.
 
LymeR Primer™ (pdf) Folleto de Sensibilización:  síntomas, pruebas, identificación de garrapatas, enfermedades que transmiten las garrapatas, prevención, eliminación de garrapatas, pruebas de garrapatas, hechos generales y síntomas sobre Lyme y muchas enfermedades transmitidas por garrapatas.
 
Disponible solo para descargar.
No hay copias impresas disponibles.
 


Scientists in Lab
Valneva announced that the vaccine candidate against Lyme disease, VLA15-201, showed positive initial results meeting its endpoints in the Phase 2 study. They stated in the July 22, 2020 press release that “compared to Phase 1, the higher doses used in this trial elicited higher antibody responses across all serotypes.” 

The Lyme Disease Association President, Pat Smith, had this to say: “A safe and effective vaccine for Lyme disease has been a goal for many decades. Unfortunately, many stakeholders, especially some vaccine recipients and providers who were then giving the vaccine, felt there were problems associated with the past Lyme vaccine, perhaps connected to its Osp A base. There are still many unanswered questions about what really happened, and like much that happens with Lyme disease, decades later, we still do not have those answers. The prudent thing for the government and/or vaccine developers to have done would have been to hold public meetings regarding a new Lyme vaccine with all interested stakeholders to hear concerns and answer questions about the development of a new Osp A-based vaccine and what research was done to address the previous concerns and any newly arisen concerns.


Asian Longhorned Tick Continues to Multiply
Can transmit to Animals in the Lab
These pictures of the  Haemaphysalis longicornis  (Asian longhorned) were taken recently by LDA’s Scientific & Professional Advisory Board member James L. Occi, Rutgers, in Bergen County NJ.  The invasive tick was first discovered on a NJ farm on a sheep in 2017. The tick probably came from Asia, where it is able to transmit diseases to cattle, other animals, and to humans and is now found in 12 states. One of the greatest concerns is about its parthenogenetic ability, the female reproduces without the male. This enables the tick to quickly become an established species in an area. It has already killed cattle in a couple states where more than a thousand ticks were found on each of the deceased animals.

To date, the Asian longhorned tick has been found in the laboratory to be able to acquire and transmit  Rickettsia rickettsii , the agent of Rocky Mountain spotted fever (RMSF) and was also found to be able to transmit  R. rickettsii  through the ova (Stanley et al, 2020).* The Asian longhorned tick has not been found to transmit to humans outside the lab at this time in North America.

However, we need to be cautious, since until several years ago, the government indicated that brown dog ticks only fed upon dogs, not people. Therefore humans did not have to worry about getting RMSF from a brown dog tick. Now we know that human transmission is happening from the brown dog tick, since we know they are biting humans, especially in the Southwest.



Occi, J. L., A. M. Egizi, R. G. Robbins, and D. M. Fonseca. 2019. Annotated List of the Hard Ticks (Acari: Ixodida: Ixodidae) of New Jersey. J. Med. Entomol. 56: 589–598.


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