Tick Borne Disease Working Group
1. We are connected and sharing, and if not can be.
2. A TBDWG is already in place and is working hard for all of us.
3. Both TBDWG’s share the same goals.
4. Changing horses mid-stream to try to build a better mouse trap?
5. Maryland doctors and patients are already represented on the federal TBDWG, which has a better “balance”.
6. Experience with Lyme disease or CHRONIC Lyme disease?
7. We Need Doctors! This bill could take away the ones we have and prevent us from getting new ones.
8. That dog don’t hunt. Chronic Lyme Exists!
9. They Just Want A “Do-Over” (with no transparency or public input) To Regain Ground & Status Lost at the Federal Level.
10. Willing To Cut Off Their Noses To Spite Their Face.
11. We WILL be needing your help fairly soon.
February 15, 2019
Dear Sponsors & Committee Members,
Some of you know me and for those who don’t- as a volunteer I have been involved with Lyme and tick borne disease education and patient support for over 30 years; first in Maryland, then nationally and now internationally. You may have come across one of my 200 plus publications during that time, or had the need to visit one of my Lyme and tick borne disease related websites, or even met me when I came in person to testify at hearings concerning Lyme disease bills in the past.
Contrary to what some have suggested about why I haven’t attended the most recent hearings in support of our position or to answer questions, I’d like to make it clear that although I have always submitted detailed, thoroughly researched testimony for our Maryland groups, doctors and patients, and faithfully watch all of the related legislative hearings online, and assist many others with their written and oral testimony, I am no longer able to travel or speak at hearings due to my decades long battle with chronic Lyme and multiple tick borne diseases (house bound/ bed bound/ totally disabled/ hearing and visually impaired).
However, even though my traveling and speaking ability is curtailed, my sincere passion for continuing my volunteer work has not diminished. My only goal has always been to try to prevent others from suffering from Lyme and tick borne diseases the way so many of us have experienced in the past. I have no other motives and nothing to gain other than some joy and happiness watching people recover after getting accurate information about their Lyme & tick borne disease diagnosis so they can be adequately treated and on the road to recovery.
You and your staff are more than welcome to contact me by email to answer any questions or concerns you may have related to this bill once you’ve read my testimony, or even during the hearings. If you have any general concerns about tick borne diseases I am and have always been more than willing to assist you. mailto:AfterTheBite@gmail.com
As for experience related to legislation- I have worked with patient advocates and Congress on our Lyme related federal bills for over ten years, and most of the state bills introduced across the country for the past 14 years. As related to Maryland bills, HB 660 and SB 557- years ago I was involved (by invitation) with the Maryland Lyme Disease Task Force. This was a situation where our patients and doctors were under-represented and as a result we had a devil of a time trying to keep Hopkins and the Maryland DHMH from plowing us under as they attempted to make their IDSA Lyme disease treatment guidelines mandatory (limited treatment and diagnostics) even though they had expired. Doctors from Johns Hopkins, the DHMH, University of Maryland and some of the other government agencies and institutions named in the current Maryland bills were also on that task force.
As for follow-up work, the State has still not taken action or complied with the recommendations in their own task force report after all these years, including the acceptance of 2 points of view and two sets of Lyme disease guidelines. The new bills would simply provide us with the same scenario to work with- having a few “token patients” on a task force that is stacked with double the number of professionals to be able to say patients were represented. This is what is happening in other states too.
I have also been actively involved with the current federal Tick Borne Disease Working Group (TBDWG) project since before its inception (21st Century Cures Act), HR 34. It was signed into law by the President on December 13, 2016. I continued to work on the newly created TBDWG project after submitting a 19 page white paper for Congress, reviewing the Cures Act (400 plus pages) and highlighting sections to share on topics affecting our Lyme patients and doctors. My volunteer efforts also included providing drafts, reports, research assistance and editing for Lyme organizations and individuals.
I have been notifying the Lyme patient community and media of the online meetings, answered questions & reported details, provided research findings, edited reports to be submitted, and attended all six of the TBDWG meetings (online) to date. In advance of each meeting I prepared and submitted a detailed report for review by members that was placed on the record. Most recently I submitted a lengthy letter and documentation supporting a nominee for the TBDWG.
For these reasons and others, I feel fairly qualified to explain why Maryland does not need a bill to establish a Tick Borne Disease Working Group at this time. The following are some of my concerns.
1. We are connected and sharing, and if not can be. People involved in tick borne disease prevention efforts, surveillance, diagnosis and treatment have daily access to others involved in these fields- via phone, fax, email and in-person meetings if so desired. There are also numerous scientific papers, conferences, teleconferences and webinars produced each year to keep others connected and informed, as well as free access to multiple TBD related websites, PubMed and Google. Coordinating plans, educating others and sharing information isn’t really a problem.
Examples of Sharing & Educating- The Entomological Society held its 15th International Conference on Lyme Borreliosis and Other Tick-borne Diseases last September. The Infectious Disease Society of America (IDSA) is hosting its week long conference in Washington DC this coming October, and another week long conference with the American Society of Tropical Diseases in Maryland in November 2019. The Centers for Disease Control (CDC), National Institutes of Health (NIH), and the National Environmental Health Association (NEHA) also held their 15thannual conference on Lyme Borreliosis and Other Tick-borne Diseases in September 2018. The national Lyme Disease Association will hold its 20th annual scientific conference in Pennsylvania this coming September that is always educational and well attended. Continued Here
2. A TBDWG is already in place and is working hard for all of us. A federal Tick Borne Disease Working Group was recently established. As required by law, the TBDWG’s first comprehensive report (105 pages) was released just two months ago in December 2018. There are also six additional reports (520 more pages) that were prepared by over sixty people from various TBDWG subcommittees and are easily accessible online. The TBDWG Group is required by Congressional legislation to continue their work until the year 2022.
Final Reports- December 2018-
https://www.hhs.gov/ash/advisory-committees/tickbornedisease/reports/index.html
3. Both TBDWG’s share the same goals. Please notice the highlighted section from the Maryland bills (page 2, lines 25-27) copied here: “( h ) … “to provide subject matter expertise and to review activities of federal and State agencies related to tick–borne diseases to ensure interagency coordination, minimize overlap, and examine research priorities.”
Compare it with the federal TBDWG mission statement. … “to provide subject matter expertise and to review federal efforts related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.”
4. Changing horses mid-stream to try to build a better mouse trap? Members of the current federal working group include a well-funded researcher from Johns Hopkins. He is the Director of the Johns Hopkins Lyme Disease Clinical Research Center, Dr. John Aucott, and Chair of the federal TBDWG. I’m fairly sure those with the grant money who have been doing TBD research for years already have plans in place, as partially described in this article from Johns Hopkins. And since they already have free access to multiple, up to date TBDWG reports that some of them helped compose (7 reports- 625 pages) we must ask if they really need to spend time duplicating that work?
5. Maryland doctors and patients are already represented on the federal TBDWG, which has a better “balance”. There are fourteen (14) representativeson the current TBDWG including: Deputy Director of the Division of Vector Borne Diseases Centers for Disease Control (CDC); Senior Technical Advisor and Lead Officer for Medicare Hospital Health and Safety Regulations, Centers for Medicare and Medicaid Services; chief of the National Institutes of Heath (NIH); and a board member, a president and an executive director from multiple national Lyme disease related organizations. Continued Here
The current membership for the Maryland TBDWG specifies there will be eight people from government agencies, plus an unlimited number more from Johns Hopkins, its affiliates and various hospitals and medical facilities that don’t/won’t treat our patients for chronic Lyme disease or even admit chronic Lyme diseaseexists. Only seven members (maximum) would be chosen for the patient oriented positions from a group of sick Lyme patients, their family members or possibly a doctor who treats them. Is that really a balanced lineup? Certainly not. The deck, as usual, is stacked.
So listen to what Kenny Rogers says about that…
6. Experience with Lyme disease or CHRONIC Lyme disease? The bill states (Page 2, lines 7-8) TBDWG members must have “providers with experience diagnosing and treating tick-borne diseases”.
Reviewing Lyme related legislative history in Maryland you will see the biggest problem we face is the fact that for decades there has been major contention between those who see patients with early Lyme disease and those who must deal with patients who are still infected after standard treatment and who often remain extremely ill due to CHRONIC Lyme disease. Early vs. Chronic. Two different worlds.
The few treating doctors (experts) left in the State- many already faced charges by the Maryland Board of Physicians for treating chronically ill Lyme patients outside the IDSA standard of care- would put their livelihoods and medical licenses at risk if they were to come forward. For the past few decades IDSA Lyme disease guideline authors and their supporters have been vicious in their publications and down right hateful to patients and doctors, so the TBDWG, like several previous bills and task force attempts to change things, is likely to be just another disaster waiting to happen.
And yes, there is a section in the bill (page 2, lines 16-17) regarding the “diversity of scientific disciplines and views”, however, that statement has been misinterpreted and abused so badly over the years it now gets the “yeah, right” response with a rolling of the eyes. Here is one article by a TBDWG subcommittee member (Phyllis Mervine) who is also the founder of the national group, LymeDisease.org explaining in part why that line doesn’t hold water with any of us.
7. We Need Doctors! This bill could take away the ones we have and prevent us from getting new ones. We need doctors, but NOT the biased, corrupt, do-nothings that attack our sick patients and doctors while forcing their failed, restrictive guidelines down our throats to the exclusion of everything else. If these new bills were to pass, the TBDWG would be dominated by those with an agenda that is literally making us sick and even killing us. Been there, done that.
Due the failure of the doctor protection bills in Maryland to come to fruition over the years, it is clear that improving the situation to make it safe for doctors to treat in Maryland is next to impossible. Example:
The Maryland Board of Physicians has opposed all legislation designed to protect doctors who treat CHRONIC Lyme disease (some with our blessings due to specific wording). On the “kill the bill” band wagon, of course, are IDSA, DOH, Hopkins and insurers. As a result, for the past three decades our patients and doctors have been living in fear and/or have left the state to either receive or dispense treatment. It’s a really long haul to carry a sick child back and forth to New York or Connecticut to be treated. It is also a shame our health care professionals must move out-of-state so they can practice medicine when we need them here.
To make matters worse the one guy who has the power to make things better in Maryland is the Director of Clinical Infectious Diseases from Johns Hopkins, Paul Auwaerter, who even today continues to obstinately insist there is no such thing as chronic Lyme disease and patients need no further treatment. He goes so far with this craziness that he actually does reviews of records and provides testimony for Lyme disease related cases against our doctors and patients. (Yes, that sucks.)
He also taints (and bullies) people with his “no such thing as chronic Lyme disease” rhetoric. Auwaerter has had multiple complaints filed against him for his outrageous actions, as have his colleagues and co-authors. Some of his Lyme disease co-authors are being sued in a federal court case, including Dr.’s Gary Wormser, Raymond Dattwyler, Eugene Shapiro, John Halperin, Robert Nadelman, Leonard Sigal and Allen Steere. Although Hopkins has been sued several times over the years, Auwaeter isn’t listed in this particular law suit. But as a side note, I feel his time is coming. Examples of complaints filed against Paul Auwaerter at Johns Hopkins-
Other States Complaint- Auwaerter
In a Maryland Board of Physicians report regarding HB 290 (2010 doctor protection bill), for example, it stated John Hopkins, Med-Chi, American Academy of Pediatrics, Infectious Diseases Society of America (IDSA- Auwaerter is a past-president) and its bogus grass roots group the American Lyme Disease Foundation (ALDF) were opposed to the bill that would allow doctors to treat chronic Lyme and tick borne diseases using an alternate set of published treatment guidelines. (Cameron, D. et.al.) Source- scroll down to the last few pages- no page #.
As a result of failing to get help, the continuing opposition and the decades old "Lyme wars", many Maryland patients have become chronically ill, disabled and too many have died. This is in part due to the fact some Maryland health care professionals are afraid to treat patients because many have been charged by the Board for doing so. Here is a partial list of charges.
The State of Maryland, Hopkins, DOH, etc., however, may soon be facing challenges in court over their reckless stance regarding Lyme disease diagnosis and treatment. (More legal information here with quotes from a similar case.) With this in mind, those involved with a TBDWG may not realize that they could be looking at a lawsuit.
8. That dog don’t hunt. Chronic Lyme Exists! Along with Auwaerter, Johns Hopkins- that is mentioned by name in Maryland's current TBDWG bills has an unlimited number of members as part of the TBDWG- does not believe in CHRONIC Lyme disease even after over 700 peer-reviewed scientific studies were published and many years of clinical evidence shows persistence. In other words, spirochetes are tricky little things and can persist, can form biofilms, and for that reason, Johns Hopkins (IDSA) recommended, limited treatment protocol isn’t working to cure many people.
Its been shown in Maryland that less than 50% of those with Lyme get a rash. We also know less than 50% knew they had a tick bite and that 74.9% of patients have false negative Lyme tests. And we know short term antibiotic treatment fails to cure many tick borne disease patients. However, Auwaerter/Hopkins seems more interested in protecting himself and others (lawsuits) by sticking to his guns, so he ignores the facts.
QUOTE from Hopkins’s Auwaerter- "Because of its signature bull’s-eye rash, the tick-borne illness is easy to detect and diagnose with blood tests and then treat with antibiotics. But watch for long-term alternative treatments for so-called “chronic Lyme disease,” especially long-term antibiotics, says Paul Auwaerter, M.D., clinical director of Johns Hopkins infectious diseases.”
Definition of Chronic Lyme Disease
9. They Just Want A “Do-Over” (with no transparency or public input) To Regain Ground & Status Lost at the Federal Level. (HB 660- Page 3, Lines 10-12.) This section directs the Maryland TBDWG to review “actions undertaken by federal agencies and researchers, including the federal Department of Health and Human Services and the National Institutes of Health”.
The reason some supporters of this bill would like a new review will vary, but those named in the bill as already having “unlimited seats at the table”, like those from Johns Hopkins, had their feathers ruffled when they lost some ground with the federal TBDWG. For example- the Infectious Diseases Society of America (IDSA) wrote a not so pleasant, but very telling letter to the TBDWG. In part they claimed:
QUOTE/Letter- “We wish to highlight significant concerns with the working group having a lack of transparency and minimal opportunities for meaningful public input.”
Hogwash! Along with others, I’ve had to work hard and granted it would have been nice to have more time, however, many of us, myself included, were able to submit papers on time to the federal TBDWG for one or more of its meetings. And the proceedings were much more transparent than the Maryland TBDWG would ever be due to the strict federal regulations requiring it to be. Additionally, questions/ concerns were addressed promptly by the staff, where as the Maryland DOH has a long history of failing to respond to or assist the public when it comes to Lyme & tick borne diseases. More information/photo located here.
Keep in mind the IDSA boasts they have “more than 11,000 physicians, health care professionals and scientists” in their letters so why couldn’t some of them help write something to get it in on time? The IDSA/Hopkins, like everyone else, also had the opportunity to express their views and submit unlimited amounts of comments throughout the process.
QUOTE/Letter- “We urge you to ensure that the federal government response to tick - borne diseases is solidly rooted in the best available scientific evidence.”
By “best” they mean their own publications. The practice of using themselves to support themselves on their published papers is well known. Allowing a “do-over” would only serve to solidify junk science like Gary Wormser’s latest (Jan. 2019) highly contested, published report that states 2 weeks of antibiotics cures Lyme disease. Aside from being self-serving and inaccurate, the list of references on this latest article included 11 of his own reports out of a total of 22 references. Six of those reports were published almost 20 years ago (before the year 2000) and 17 of the 22 referenced articles were written by himself and/or his little group of IDSA Lyme disease guideline authors. This kind of example, one of many, hopefully shows you how unwilling Johns Hopkins is to come to the table to listen or make changes. Allowing them to control a TBDWG in Maryland would be nothing less than disastrous for your constituents.
QUOTE/Letter- “Further, several of the Working Group subcommittees excluded participants whose viewpoints aligned with scientific evidence and the mainstream medical community, despite many qualified volunteers submitting applications. The makeup of the Working Group skewed to individuals with perspectives that do not align with the overwhelming majority of scientific evidence regarding the diagnosis and treatment of Lyme disease.” [Basically saying they want to rule the roost and regain lost ground by having a do-over in Maryland.]
Of course, some who applied to become a member of the TBDWG were not selected (strict criteria). Some were unable to serve over concerns of not being able to be gainfully employed (as an attorney for example) and some are sitting back crying now because their views were discounted, or as the IDSA stated they were “stifled” for one reason or another. The tears being shed are over the IDSA’s long time goal of keeping patents (tests, vaccines, etc.) producing revenue and their names out of the mud. They also need to be on the winning side in a court room setting.
10. Willing To Cut Off Their Noses To Spite Their Face. To explain why some people want a second TBDWG, you’ll see in the quote below IDSA/Hopkins would actually turn down funding for studies related to treatment of Lyme disease because they have literally closed the book on it in order to protect their position. It is their way or the highway.
QUOTE/Letter- “…there is not a pressing need for additional federally supported research on antibiotic treatment for Lyme disease. There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases.”
Please don’t give the ones who have denied us treatment another chance by way of a Maryland TBDWG to shut the door on much needed treatment studies. Anyone familiar with chronic Lyme and tick borne diseases knows we don’t have a cure for many and desperately need one.
Gary Wormser (IDSA in New York, and lead author of the highly contested Lyme disease guidelines, originally from Johns Hopkins) was removed as a member of the federal TBDWG after more than 10,000 people in just four days complained about his appointment.
This “trick” they are now trying to pull in Maryland has already been successful in New York, with none other than Gary Wormser reappearing and being assigned to the TBDWG there. List of members on NY TBDWG.
Please don’t let this happen here. PLEASE withdraw HB 660 and SB 557.
11. We WILL be needing your help fairly soon. For the past several years IDSA has been trying to write new Lyme Disease Diagnostic and Treatment Guidelines. With the unbelievable amount of “fluff” articles the authors have been publishing recently in order to pad the references section and make their GRADE scores higher, and the fact the IDSA (Wormser) continues to publish nonsense articles like, Should Patients Infected with Borrelia burgdorferi No Longer Be Referred to as Having Lyme Disease? and because of the continuing punches being thrown at sick patients and their doctors, the new guidelines look to be worse than the 2006 guidelines. To recap, after his lengthy investigation into the 2006 Lyme Disease Guidelines* AG Blumenthal stated:
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
*Paul Auwaerter at Johns Hopkins was the editor of those guidelines and Stephen Dumler (Hopkins, University of Maryland) was an author.
We are also expecting that a human Lyme disease vaccine will be released once the last of the trials are over (it is being “fast-tracked”). Don’t worry that there still isn’t an accurate Lyme test that can be used to determine an end point result in the vaccine studies, or that people with chronic Lyme aren’t included in the studies, or that the previous vaccine failed miserably, because certainly the manufactures and IDSA/Hopkins aren’t concerned.
The new vaccine (Valneva) appears to be a recycled version of the original vaccine that was pulled from the market about two years after its release and after multiple law suits were filed against the manufacturers. Unfortunately, Maryland government agencies, Johns Hopkins and even Maryland legislators along with insurers (1999- HB 311/SB 420) strongly supported this failed vaccine. Once bitten, twice shy.
The vaccine issue was one of the most heated debates for the federal TBDWG. The committee had mostly government agency reps and one member from the University of Maryland (Utpal Pal). There were no patients or Lyme organization members on it. The deck was definitely stacked and would be again in Maryland.
QUOTE (LymeRix Vaccine) "U.S. government agencies, including the CDC, the National Institutes of Health, and Department of Defense own partial rights to revenue from more than a third of the 56 U.S. patents identified as especially significant for Lyme disease vaccines and tests.” Source
Unlike all of the other committee reports that had complaints coming from the IDSA, the IDSA was pleased with the vaccine report. Their satisfaction was in part due to the membership makeup, and the fact Stanley Plotkin (adjunct professor at Hopkins) was a subcommittee member. In the meantime, Paul Auwaerter (Hopkins) has been discounting competing vaccines and other prevention methods in hopes that the human vaccine will be #1 on the list of ways to prevent Lyme disease. Cha-ching $$$. Since Johns Hopkins and IDSA were promoters of the failed vaccine, it is not hard to imagine the outcome in a closed Maryland TBDWG setting.
Then there is the insurance issue and Lyme patients having to pay out-of-pocket for diagnosis and treatment even though they have health insurance policies. A TBDWG in Maryland like the one spelled out in the bill would almost guarantee us a decade or more of no coverage. IDSA & insurers go together like peanut butter and jelly.
So please know that we WILL need you, just not at this moment and with all due respect, not for a TBDWG bill. Thank you so much for always trying to help us! We do appreciate your thoughts, kindness and your hard work!
And don’t forget, do a tick check!
Lucy Barnes, Director
Lyme Disease Education & Support Groups of Maryland
631 Railroad Avenue
Centreville, MD 21617
Testimony Posted Online For Easier Reading and Access
Additional Notes Located Here
Sent to Sponsors 2/15/19 by email