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

Podium (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.

Bridget Fleming, Suffolk County Legislator, 2nd District (see tick warning sign)

Click here for Senator Schumer Press Release

See News Videos Below


Federal TBD Working Group Featured on NBC News NY

NBC News 4 NewYork featuring Tick-Borne Disease Working GroupNBC News 4 New York aired a piece on the federal Tick-Borne Working Group, Tri-State Helps Bring Hope to Lyme Wars Public Health Crisis, on February 21, 2018. The video featured LDA President, Pat Smith; Lyme Society, Inc. President, Bob Sabatino; John Aucott, Co-Chair of the Working Group; as well as a number of patients.
Click here to watch the NBC clip

NBC News 4 New York aired a piece on the federal Tick-Borne Working Group, Tri-State Helps Bring Hope to Lyme Wars Public Health Crisis, on February 21, 2018. The video featured LDA President, Pat Smith; Lyme Society, Inc. President, Bob Sabatino; John Aucott, Co-Chair of the Working Group; as well as a number of patients.

The Tick-Borne Disease Working Group was established by the 21st Century Cures Act to improve federal coordination of efforts related to tick-borne diseases. Members will review all U.S. Department of Health and Human Services efforts related to tick-borne diseases to provide expertise and help ensure interagency coordination and minimize overlap, examine research priorities and identify unmet needs.

Click here to watch the NBC clip

NBC News 4 NewYork featuring Tick-Borne Disease Working Group

Tri-State Helps Bring Hope to Lyme Wars Public Health Crisis
A major change is happening in the Lyme Wars with top experts taking action with help from people in the tri-state. Natalie Pasquarella reports.



Click here for Tick-Borne Disease Working Group News on LDA website

Click here for Working Group Updates on U.S. Department of Health and Human Services (HHS) website

Focus on Lyme Presents Advocacy Award at Scientific Conf.

Advocacy Award CroppedFocus on Lyme held its 2nd Annual Wave of Change Scientific Conference & Gala on February 23-24, 2017 in Paradise Valley, AZ. Lyme Disease Association President Pat Smith was honored with the “Excellence in Advocacy” award at the conference for the work done by LDA in regards to legislation, and in particular, Lyme language in the 21st Century Cures Act.

Advocacy Award Cropped(L-R)Tammy Crawford, Executive Director, Focus on Lyme; Holly Ahern, MS, MT (ASCP), SUNY Adirondack; Patricia Smith, President, Lyme Disease AssociationFocus on Lyme held its 2nd Annual Wave of Change Scientific Conference & Gala on February 23-24, 2017 in Paradise Valley, AZ. Lyme Disease Association President Pat Smith was honored with the “Excellence in Advocacy” award at the conference for the work done by LDA in regards to legislation, and in particular, Lyme language in the 21st Century Cures Act.

At the opening of the conference, Tammy Crawford, Executive Director, Focus on Lyme, announced the award presentation, and Holly Ahern, MS, MT (ASCP), State University New York, spoke about the legislative work of Pat Smith, President of the LDA, and a presentation Ms. Smith had made at a Forum sponsored by then Congressman Chris Gibson (NY) several years ago on how to achieve legislation and how that came into play in Pat’s subsequent work.

Accepting the award on behalf of patients, Ms. Smith addressed the conference and spoke about her family’s experiences with Lyme, Lyme disease symptoms, and the many years of Lyme disease treatment needed to make her family members better. After the event, she commented, “I thank Focus On Lyme for their advocacy award, which I accepted on behalf of patients, treating physicians, and researchers working on persistence, the people who really deserve an award. However, the thrust of the conference was on and should have been on the research we so desperately need to help the hundreds of thousands of those sick with chronic Lyme and other tick-borne diseases, and I especially thank Focus on Lyme for keeping their eye on the prize.”

Said Ms. Crawford after the event, “Focus On Lyme was so excited to honor Pat Smith for her life time of advocacy and achievement for those who suffer with Lyme disease. Pat is a true hero to us.”

Ms. Ahearn’s written remarks about Pat Smith “Focus on Lyme — Advocacy in Motion”

In late 2016, the 21st Century Cures Act was passed by Congress and signed into law. The Cures Act includes language that requires the DHHS to convene a new working group on Tick-borne Diseases that will include stakeholders from diverse federal and non-federal scientific and medical backgrounds.

However, if it were not for the leadership and tireless efforts of Pat Smith, President of the Lyme Disease Association, that achievement would not have been won. Late in the process, the language pertaining to tick-borne disease had been pared down to nothing more than a suggestion that maybe a group should be formed.

Over the long Thanksgiving weekend, Pat and other national leaders conferenced to develop a strategy. It was Pat who pressed the appropriate Congressional offices to restore the original language, while the Lyme community stood poised to demand that it otherwise be removed.

It was only through the leadership and tireless efforts of Pat Smith that we were able to restore the language needed for creation of this federal advisory body to the Cures Act, in the wee hours before final passage of the legislation by Congress.

As a result, for the first time in the 40 year history of Lyme disease in the US, patients and advocates will have a seat at the table and a voice in the national decision-making process with regard to research and public health priorities.

About Focus On Lyme
Focus On Lyme was formed in 2015 to discover solutions in diagnostics, prevention, treatment and advocacy for Lyme disease sufferers. The best Lyme diagnostic tools that exist today are only 50 percent accurate and for those that are correctly diagnosed, there is not an accurate tool to evaluate the effectiveness of their treatment. Focus On Lyme is striving to provide immediate diagnosis and treatment to Lyme patients worldwide delivering a higher quality of life and minimal long-term effects. Focus On Lyme is sponsored by Leadership Children’s Foundation, a non-profit organization dedicated to helping children by donating money to causes that help preserve childhood and improve the quality of life for young people across the nation. For more information, visit:


Obama Signs 21st Century Cures Bill into Law

December 13, 2016, President Obama signed the 21st Century Cures Act into law. This law has provisions for many diseases, including creating a Working Group for tick-borne diseases. “This is a sweet victory for 2016 president obama official portrait loLyme patients whose plight has been ignored for decades. They will have an opportunity to sit at the table in Washington, DC, and to provide their input into how significant government research needs to focus on understanding the mechanisms of persistent symptoms, on a test that actually provides accurate information as to whether Lyme is present, and on new treatment modalities. The discussion will take place with advocates, federal members, physicians and researchers also at the table, and will be held in public. Diversity of scientific disciplines and viewpoints are key in this legislation, signed into law as part of 21st Century Cures Act by President Obama,” said Pat Smith, President, Lyme Disease Association.

How to Find Lyme Text
The link below goes to the 21st Century Cures Act signed into law in December 2016.
The Section on Tick-Borne Diseases, Section 2062, is on page 47 of the pdf.
If you are in Windows, when you go into the link, hit “control f” to get search box and enter “2062” and hit NEXT two times which brings you to the language on tick-borne diseases.

Click here for Congressman Christopher Smith’s Press Release

Click here for Congressman Christopher Smith’s Newsletter

Click here for Congressman Christopher Smith’s video 

Click here for Congressman Chris Gibson’s Press Release


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Ground Breaking News: Bill Language Included to Help Lyme Patients!


LDA: All Volunteer National Non-Profit
Changing the Face of Lyme through Research, Education & Patient Advocacy

December 1, 2016

Bill With Lyme Language Passes  
House of Representatives 392-26! 

Chronic Lyme Patients Have Ally in Congress!
Rep. Chris Smith: Support Working Group on Tick-borne Disease

YouTube Video Published on Dec 1, 2016

Congressman Chris Smith (NJ-04), Chair, Africa, Global Health, Global Human Rights, and International Organizations; Co-Chair, House Lyme Disease Caucus, spoke just before the passage of the 21st Century Cures Act, which will establish a new working group on Tick-Borne Disease and help patients with Chronic Lyme.

Press Release, Nov. 30, 2016

LDA Thanks Following Key Legislators for their Swift Action

House Majority Leader Kevin McCarthy


Chairman Fred Upton of the Energy Commerce Committee

Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus
Congressman Chris Gibson, Author of Original 21st Century Cure Lyme Language



Asbury Park Press: Big News for Chronic Lyme Sufferers

With the help of Rep. Chris Smith and a Wall advocate, the House passed breakthrough legislation on the hot-button issue.

“For decades, Wall resident Pat Smith has implored the medical establishment to acknowledge the existence of chronic Lyme disease. On Wednesday, her quest took a big step forward.
The House of Representatives passed the 21st Century Cures Act, a comprehensive health care bill that would establish a national working group on Lyme disease. The 14-member panel would include physicians with experience in treating tick-borne diseases, Lyme patients and advocates for those suffering from the condition.

‘This is really groundbreaking,’ said Smith, president of national nonprofit Lyme Disease Association in Wall. ‘Prior to this we’ve never had anything at the federal level that permitted patients to be at the table with federal officials. It’s desperately needed.'”
(Asbury Park Press, 12/1/2106, Jerry Carino: 

Press Release from Lyme Community Leaders

November 30, 2016 Lyme community leaders are pleased to announce that language on tick-borne diseases (TBD) will be included in the 21st Century Cures Act (the House Amendment to Senate Amendment to HR 34). The inclusion of this language was achieved after 2 days of intense negotiations with Congressional offices. The language will be included in the House version of the bill which is expected to pass easily due to its broad bipartisan support. The signatories listed below mutually agreed upon the new TBD language that will now be included in the bill.
Yesterday and early today, Leaders put out calls to the community to have them contact their federal Senators and Representatives to pull out congressionally proposed Lyme language that would have contradicted the bill’s intent. Thank you all for those efforts. Congressional leaders responded by indicating a willingness to work with the Lyme community. That effort was successfully concluded at 5pm today when the Rules committee met and the proposed language agreed upon by both sides was incorporated into the large 21st Century Cures amendment legislation.
We would like to thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, and Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, for their efforts to make this happen. We also thank Congressman Chris Gibson whose work in having Lyme language inserted into the original Cures Act which passed the House enabled us to move forward with this groundbreaking effort.
A vote on the Rules portion and then on the Managers Amendment will take place Tomorrow Wednesday, midday, and will be broadcast on Go to in the AM to get schedules and watch proceedings.
Patricia Smith, President, Lyme Disease Association, Inc.
Jill Auerbach Chair, Hudson Valley Lyme Disease Association
Phyllis Mervine, President,
Ira Auerbach, Hudson Valley Lyme Disease Association
Christina T. Fisk, President, Lyme Action Network
David Roth, Founder of Tick Borne Disease Alliance and Global Lyme Alliance 
Bruce Fries, President, Patient Centered Care Advocacy Group
Holly Ahern, Vice President, Lyme Action Network
Dorothy Leland, Vice President,
Timohy Lynagh, Board Member, Lyme Disease Association, Inc.  


Bill passed 392-26 on November 30th.

Click here for roll call vote on bill

Bill Text

Official bill text is not yet available since bill was passed yesterday, but for those who can’t wait, it can be accessed by putting the information together on these 2 links below.   

There is a manager’s amendment that was passed that will take care of the edits. The manager’s amendment can be found at this link:

The amendment makes edits to the text posted here:


The Lyme Bill: Fact & Fiction

Pat Smith, President, LDA

Congressman Chris Smith
 Pat Smith, President, LDA

The passage of the amendment to 21st Century Cures Act by the House is a big step forward for the Lyme community. Unfortunately, there are many misconceptions, half-truths, and outright fabrications surrounding it and its passage.

The facts are, like it or not, the government agencies do oversee and control different areas of our life, including health care. CDC and NIH under Health & Human Services are the 2 agencies we are usually concerned about. They define disease, have great influence over treatment, prevention, and research. To move forward, we need to influence what those bodies do through legislation and other policy decisions.
Existent Working Group & Beginning of 21st Century Cures
For several years, there already has been a working group in DC on Lyme disease. Shocked? Yes, folks, a working group. Is anyone sitting on it from the Lyme community? No. Are they all federal officials? Yes. Are their deliberations public? No. Are they influencing Lyme & TBD? Yes. To combat that, we had to get a bill passed. We worked with Congressman Chris Smith for years then also with Congressman Chris Gibson to do just that several years ago. Did the agencies want it? No. Did IDSA want it? No. We were in intense negotiations then with Congress, and they even pulled a last minute switch in bills which we fought to overcome with the help of the Lyme community and were successful, resulting in passage by the House of the Gibson bill in 21st Century Cures, a huge health care initiative.
Senate on Cures
The Senate did not want to pass the House version of Cures, so it decided to write its own bill, with no or vastly altered Lyme language, that was unclear. Many of us fought to support the Senate Blumenthal bill, which was a similar bill to a prior Chris Smith bill in the House. The hope was that language would be then used in the Senate version of Cures bill. The Senate HELP Committee would not schedule it for a vote, but the House & Senate both wanted a “21st Century Cures” type legislation to pass, as the contents were popular among constituents. So Senate and House worked behind the scenes and drew up a compromise, an amendment to the previously passed House Cures bill, which the House would first vote on, then the Senate.
House on Cures
The House, without our knowledge, altered the Lyme language inside the amendment to where it was harmful to the Lyme community. Thanks to some quick action on the part of some advocates who found out on Sunday, the 27th, a number of Lyme leaders who had worked on this issue before, got together immediately on a phone call, assessed the issue and voted to try to get the House to pull out the harmful language. Some of us put out letters to the appropriate individuals in Congress we felt could influence the outcome. LDA and some others wrote to Majority Leader Kevin McCarthy and expressed our concerns and said we wanted the language removed. They understood our concerns.
Negotiations Process
Those letters led to Sunday and Monday negotiations. Now do not let that word fool you. Despite the misinformation on the internet intended to disrupt the process, LDA did not hire a lobbyist for $250,000, or for any amount of money. LDA is all-volunteer run and consists of patients and families of patients. Our monies primarily go to education, prevention and research efforts, and you can find much on the LDA website showing what we have accomplished. The negotiations were done with our own Lyme people. They were intense. There is a faction of Congress that does not want to deal with Lyme, it is an anathema. They would rather ignore it, or pay lip service, or are influenced by certain groups– Guess who? Some have loyalty to the agencies, who do not want this Lyme bill at all. Any irresponsible actions of Lyme patients or advocates are noted and used against the Lyme community. By being credible, we have begun to break that cycle. We are factual, we are organized, we are not irresponsible.
We fought intensely over the 2-day period to get as much of the language back in as possible, and at one point, they would not budge on a word that was significant and we said, OK, no deal, but they would not remove the bad language. We were at impasse. I reminded them the Cures Act they voted in a year ago contained very similar language. They changed their decision, and agreed to the necessary language. Because we had gotten the main tenets of the good language back, it was a victory. In summary, we would have had very bad Tick-Borne Diseases Working Group language for patients, no patients on panel, no categories of individuals, no different views. Those were put back in the bill.
Another Fiction
To address those online who said the language was “hidden,” when you negotiate up to the time the final language had to go to the Rules Committee, the government takes an inordinate amount of time to post that language. When they do, it is hard to find, even when you know where to look. We had 6 iterations of changes during our negotiations, did we see them and have them yes, but they were in formats that are not official, the corrections are there like in the track changes program, and they have not been put into form by Rules, so not official language. Therefore, we could not release that and could not even send you to the Rules’ site as it did not have that language but had the old, bad one. Last night, Rules posted the changes, and we have had the link on our website, where anyone could find it. But it was in the Amendment and thus was in a format that said “strike xxx line 47” etc. Not very useful.
Bottom line, they offered us lemons, we made lemonade. Not as sweet as we would like it, but it replaced something that yes, IDSA, and the agencies would have loved: no list of categories, no diversity of views, no FACA, which means transparency and accountability. Would we have liked more? Yes. Would we have had the Lyme provision removed if we could have and started from scratch in the future? Yes, but that was not an option. What we got was good. Plus we have several champions in the upcoming Congress who will be helping us to ensure we can make the best of this language, if it passes, in the Senate.
Last internet misstatement I will correct is that Chris Gibson was opposed to this action and told us not to do it. Mr. Gibson, who is leaving Congress, called me after the negotiations was complete to thank us for putting back the heart of the bill for the benefit of Lyme patients, and he has some ideas for Lyme which he has asked for our cooperation with, and he spoke on the floor of the House today in favor of the bill, and specifically, the Lyme provision, as did Congressman Smith, where the bill passed 392-26. On to the Senate.  Click here for Cures Passage Article
So the next time someone writes one of these outrageous claims, ask them to back it up. And if the same person(s) continue to make claims, perhaps you need to find other more credible sources for you information.
Information on the history of the bill action going back years is documented on the LDA website and also, two groups which have spent years fighting for the rights of patients.
As soon as the official language is published, we will post a link to it. 

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Lyme Disease Association, Inc., PO BOX 1438, Jackson, NJ 08527

CDC Reduces Numbers Suffering from Chronic Lyme

Investigative journalist Mary Beth Pfeiffer has broken a story in the Huffington Post that has significant impact on patients. For years, the Centers for Disease Control & Prevention (CDC) has been citing 10-20% of patients treated with antibiotics for Lyme will have lingering symptoms. Now, CDC has changed that stat on its website to say a “small percent” will have lingering symptoms that can last for more than 6 months of what is “properly called Post-Treatment Lyme Disease Syndrome,” not “chronic Lyme disease.”

In a website paragraph without even a citation to back it up, the CDC has reverted back to the dangerous dogma which has prevented patients with chronic Lyme from receiving treatment. Ms. Pfeiffer contacted CDC to ask about the change in language and was told it was based on a 2015 study (Weitzner 2015) which indicated a frequency of less than 5% for Post Treatment Lyme Disease Syndrome and on a reevaluation of the Marques study from which the 10-20% estimate was originally derived. Click here for Huffington Post article

No mention is made by CDC of the many studies which show the figure for chronic Lyme/PTLDS to be much higher, and the Dersch 2015 paper, which is an analysis of dozens of studies showing a resultant 28% with long-term symptoms. No reevaluation information from that Marquez study—a reevaluation they purported to have performed– seems to be provided anywhere, and no peer review on that reevaluation issue appears to have surfaced.

A double standard is in play, as the broad-brushed conclusions on the long-term treatment trials for patients, conclusions supported by both CDC and NIH– long term treatment provided no benefit to Lyme patients—have been challenged in a number of peer review articles, which refute those broad brushed conclusions; yet to date, neither CDC nor NIH have changed/softened their position on that issue and continue to support that data on websites while ignoring science which refutes those conclusions.

This double standard has enabled the IDSA to continue to select and use the same biased science for the basis of their Lyme treatment guidelines which prevent patients from receiving antibiotic treatment when they remain symptomatic. Many advocates have written to CDC to make it aware of that injustice, but CDC’s stance has not shifted (nor has NIH’s).

They do NOT want patients to be treated for more than a few weeks for a severely mentally and physically debilitating disease. That has been a fact for most of my 32 years of involvement as an advocate. They never wanted to acknowledge the numbers, or the spread− none in the South and the Midwest they insisted– using selective science to support those stances. Now the increasing Lyme case numbers which CDC has finally had to acknowledge (300,000 cases annually) and the fact that the tick vectors for Lyme now occur in almost 50% of the counties in the US has presented them with a dilemma. More disease in more places means more chronic patients who are seeking treatment.

According to the CDC answer to Ms. Pfeiffer cited in the Post article on the change downward in numbers of PTLDS cases, “this is not a substantive change….The point of the paragraph is simply to make patients aware that PTLDS occurs.” The tens of thousands afflicted with chronic Lyme annually don’t need to be told they have a syndrome, nor do they need to be marginalized more than they already have been for decades. They do not need continuing dogma that initiates more studies designed to repeatedly and unsuccessfully camouflage the truth about Lyme and its persistence, “science” that has sucked hundreds of millions of dollars from government coffers—funds that were allocated by our federal representatives to provide real help for sick people not to erase them from the public consciousness.

Patients need and deserve a substantive change, a solution using 21st century science, e.g., persisters, biofilms, other mechanisms the Lyme bacteria use to avoid complete eradication. An agency whose job is to provide disease control and prevention for the American public should be championing that solution rather than standing behind shoddy science destroying individuals and families across this country and the world. Pat Smith, LDA President