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Historic Lyme Bill, HR 220, Reintroduced in New Congress by Rep. Chris Smith

Smith HeadRep. Chris SmithRep. Chris Smith (R-NJ), founder and co-chair of the Congressional Lyme Disease Caucus, reintroduced legislation on January 3rd, the first legislative day of the 116th Congress, to create a new national strategy on Lyme disease and other tick-borne diseases and have a better coordinated federal response across agencies to fight, treat and prevent tick-borne disease. The bill number is HR 220, and Minnesota Congressman Collin Peterson is the lead Democratic co-sponsor of the legislation.

Regarding the legislation, LDA President, also an HHS Tick-Borne Disease Working Group member, Pat Smith, said: “Everyone deserves protection against Lyme disease, yet Lyme has marched forward unchallenged across the US for decades, disabling many including our most precious resources, our children, who are a high risk group. CDC announced in its Vital Signs monthly report that tick-borne disease case numbers have doubled between 2004-2016, and the US is not prepared to deal with this threat—a fact substantiated by the 2017 record number of CDC-reported Lyme cases, 42,743. Factoring in under-reporting, 427,430 new Lyme cases occurred in the US alone in 2017, a staggering number, which does not include other tick-borne diseases (TBD) and disorders facing Americans.

Tick vectors of disease continue to proliferate unchecked, and the recent emergence over last year of a new self-cloning tick in the US that can lay up to 2,000 eggs, longicornis—that has already spread to nine states—should signal that we have a new enemy, yet we still have no idea what damage this one can do. Everyone is a potential casualty. This bill provides a plan for a national strategy under HHS to help, through research, patients already debilitated by Lyme/TBD—fighting for diagnosis, treatment and for their very lives—and to help prevent others from facing the same fate by developing methods of tick control. The time for Congress to act on this bill is now! Losing this war is not an option, everyone is a potential casualty.”

The bill comes shortly after the HHS Tick-Borne Disease Working Group released its first annual report to Congress which states, “[t]ick-borne diseases have rapidly become a serious and growing threat to public health in the United States…. Studies indicate that Lyme disease costs approximately $1.3 billion each year in direct medical costs alone in the United States. A comprehensive understanding of the full economic and societal cost remains unknown…. Prompt diagnosis and treatment of tick-borne diseases are crucial to prevent long-term complications. Today, available diagnostic tests can be inaccurate and complex to interpret, especially during the earliest stage of infection when treatment is most effective.…This leaves physicians without the tools needed to diagnose; and without an accurate diagnosis, it is challenging for physicians to provide early treatment… Persistent symptoms after treatment of Lyme disease can be severe, yet their cause(s) remains unknown and debated. There are currently no uniformly accepted or validated treatment options for patients with these chronic symptoms…. Increased Federal funding, prioritization, and leadership are needed to reverse the alarming trends associated with tick-borne diseases.”

The Lyme Disease Association, Inc. supports the bill and will be posting updates on actions that can be taken to help support the passage of this ground breaking legislation.

Congressman Smith Press release

To read about the original introduction of the last House Session of this bill in 2018, Click Here.

Click here for HR 220 Bill Text

 

 




Congressman Smith Introduces: National Lyme & Tick-Borne Diseases Control & Accountability Act of 2018

Smith HeadCongressman Christopher H. SmithMay 21, 2018–The Lyme Disease Association, Inc. announces the introduction of HR 5900,* “National Lyme and Tick-Borne Diseases Control and Accountability Act of 2018’’ into the US House of Representatives by Congressman Christopher H. Smith (NJ-4). The Act will establish the Office of Oversight and Coordination for Tick-Borne Diseases in the Office of the Secretary of Health & Human Services (HHS) to be headed by a director appointed by the Secretary.  Representatives Peterson (D-MN7), Faso (R-NY19), Comstock (R-VA10) and Posey (R-FL8) have joined Mr. Smith in co-sponsoring the bill.

Its purposes are to oversee the creation and establishment of an integrated national strategy to overcome Lyme disease and other tick-borne diseases (TBD) and to oversee and coordinate Lyme and TBD programs and activities across agencies and offices of HHS.

Reps. Chris Smith (R-NJ) and Collin Peterson (D-MN), the co-chairs of the Congressional Lyme Disease Caucus, and the other co-sponsors are pushing the bipartisan legislation to create a new national strategy for Lyme disease and strengthen treatment and prevention of Lyme and other tick-borne diseases.

According to LDA President Pat Smith, “There is an urgent need for the House to pass this bill so that Lyme and other tick-borne diseases (TBD) are addressed in a coordinated fashion. The US needs to play a leadership role in this effort, since Lyme is spreading around the globe as are many other TBD, ~20 in the US alone. The public is at risk, as are our children, since tick-borne disease cases have doubled over the past 13 years. I applaud Congressman Smith’s continued focus on the impact upon individuals and families who have TBD and upon the public at large who may contract these diseases from ever increasing existing tick populations, and perhaps in the future, from a new tick such as the invasive longicornis tick now found in NJ—the impact of which tick is yet little understood.”

Objectives of Office of Oversight and Coordination for Tick-Borne Diseases include expansion and enhancement of epidemiological research & basic translational, clinical and biomedical research; expansion and improvement of surveillance and reporting of Lyme and TBD including coinfections; development of effective diagnostic tests to accurately and timely diagnose Lyme & TBD, including direct detection tests; development of treatments to cure or improve the lives of those affected with Lyme & TBD or who suffer from tick-induced disorder; design and conduct clinical trials of sufficient size and duration to support clinical recommendations; development of patient registries; documentation of experiences of health care professionals in diagnosing TBD; inclusion individuals with chronic Lyme disease in clinical, research, and service efforts; and coordination with international bodies to integrate and inform the fight against Lyme and TBD globally.

The Lyme Disease Association provided input into the development of the bill with the Office of Congressman Christopher Smith.

*LDA Note:  HR 5900 introduced on 5/21 is the same as HR 5878 introduced on 5/18 — due to a technical glitch

Click here for full bill text HR 5878 (the same as HR 5900)

Click here for Congressman Smith’s press release

Click here for LDA’s Newsletter on Lyme bill




US Rep. Faso Intros House Resolution: May “National Lyme Disease Awareness Month”

rep john fasoRep. John FasoRep. Faso is a member of the House Lyme Caucus, a bi-partisan group working together in Congress to take action on Lyme & tick-borne diseases. The Caucus is co-chaired by Congressmen Chris Smith (NJ) and Collin Peterson (MN). The Caucus has initiated letters and actions to benefit patients with Lyme & tick-borne diseases as well as the general public exposed to such diseases.

Click here for info on H.RES 887

 




New Federal Monies & Important Directives Targeting Lyme & Tick-Borne Diseases

2015 Chris Smith and Pat SmithThe Consolidated Appropriations Act, 2018, signed into law on March 23, 2018 (Public Law 115-141), funds the Federal government through Sept. 30, 2018. It includes increased funding of $12.2 million for CDC’s vector-borne diseases activities and an increase of $353.6 million for the National Institutes of Allergy & Infectious Diseases, NIAID, which is the NIH Institute that funds Lyme disease research, influenza, and other infectious diseases.

2015 Chris Smith and Pat SmithCongressman Chris Smith & Pat Smith, LDA Pres.The Consolidated Appropriations Act, 2018, signed into law on March 23, 2018 (Public Law 115-141), funds the Federal government through Sept. 30, 2018. It includes increased funding of $12.2 million for CDC’s vector-borne diseases activities and an increase of $353.6 million for the National Institutes of Allergy & Infectious Diseases, NIAID, which is the NIH Institute that funds Lyme disease research, influenza, and other infectious diseases. Vector-borne diseases funding cannot be found in the actual language of the consolidated bill, but can be found in the joint explanatory statement for the Consolidated Appropriations Act, in Book III of the Congressional Record for March 22, 2018. Similarly, 2017 Vector-borne Diseases funding can be found in the May 3, 2017 Congressional Record. In addition, each individual appropriations bill that passed either the House or Senate Appropriations Committee has a committee report that provides explanations of Congressional intent and directions to agencies in expending appropriated funds, such as referenced below.

The Lyme Disease Association, Inc., LDA, worked with the office of Congressman Chris Smith (NJ) in developing several provisions that were included in the appropriate committee report, i.e., H. Report 115-244. Those provisions included: ensuring transparency, input from treating physicians and representation of the broad spectrum of scientific viewpoints in CDC’s physician education program for Lyme disease; a written rationale for treatment guidelines included on CDC’s website; research that will increase understanding of full range of Lyme disease processes and physiology of Borrelia burgdorferi and B. mayonii, including mechanisms of persistence; development of more sensitive and accurate diagnostics for Lyme and other TBD, including next generation PCR and new methodologies, such as omics; a bibliography of peer-reviewed TBD literature to include literature on possible mechanisms of persistent Borrelia infection. Other stakeholder and patient advocacy organizations developed report language submitted through members of Congress, including major improvements in surveillance and prevention, expanded research in diagnostics and treatment, requirement for CDC goals and performance indicators.




Congress Can Help Stamp Out Lyme Disease Without Taxpayer $$

November 9, 2017─The Lyme Disease Association (LDA) announces that Congressman John Faso (NY-19) has introduced today into the US johnfasoCongressman John Faso NY-19House of Representatives a bipartisan bill, HR 4333, which if passed and signed into law, will provide some much needed monies for Lyme disease and related tick-borne illness research─research within the National Allergy & Infectious Diseases (NIAID), National Institutes of Health. Any monies raised by stamp sales will not affect the level of appropriations or other funding that NIAID would be able to receive in any given year.

LDA President Pat Smith has this to say about the bill: “The Lyme Disease Research Stamp Act introduced by Congressman Faso enables Congress to provide an opportunity to raise much needed funds for Lyme and other tick-borne diseases research, yet it does not add to the financial burden of the federal government. It enables individuals who want to support Lyme research–so that patients can get proper diagnosis and treatment–to do so without a strain on their budgets and without an unnecessary expenditure of time. Buy a Lyme stamp, help save a life! It’s a win-win situation.

The Lyme Disease Association urges all Congressmen and Senators to support the bill.

The stamp would be sold through the United States Post Office (USPS) at a price above the current first class postal rate. The USPO has “discretionary authority to issue and sell semipostal stamps to advance such causes as it considers to be ‘‘in the national public interest and appropriate.’’ See details of the program: https://about.usps.com/news/national-releases/2017/pr17_057.htm

Click here for the bill

Click here for Congressman Faso’s press release

 




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.
https://www.congress.gov/114/bills/hr34/BILLS-114hr34enr.pdf

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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Senate Passes 21st Century Cures with Lyme Language

Patients Will Have a Seat On the Tick-Borne Diseases Working Group

The US Senate passed the 21st Century Cures bill which included Lyme language. After days of discussion on the Senate floor about numerous provisos in the huge health care initiative, and stalling on the floor, a vote was called for and the Senate amendment including Lyme passed 94-5.  The five Senators who voted no on the Cures Act are Sanders (I), Wyden (D), Merkley (D), Lee (R), Warren (D).

President Obama, in his weekly address on December 3, called upon the Senate to pass this important legislative package just as the House had overwhelmingly done on November 30.

See Lyme portion of the language passed by US House click here
See video on House click here

The LDA and other groups worked up until the US House Rules Committee met on November 29 to change language which would have been bad for Lyme patients, who would not have had a seat at the table of a federal working group, something they have long been denied
despite their long held commitment to the best science.

According to Lyme Disease Association President Pat Smith, “We have worked for many years to get chronic Lyme recognized, as probably 20% or so of patients develop it after short-term treatment. The government agencies have not recognized those individuals with chronic symptoms, and along with certain groups who have exclusively promulgated Lyme treatment guidelines that only permit short-term treatment, they have shut out from the deliberations in DC the most important stakeholder group, patients, along with advocates and treating physicians.”

She added, “these stakeholders will provide input into the research choices necessary to help all Lyme patients – research then funded by the agencies. Much of the past research funded ignored the plight of those with chronic disease, and discounted the research that so clearly demonstrates that the spirochete may survive current recommended treatment regimens.” Not only does this bill allow for those stakeholders at the table, but also it requires a diversity of “scientific disciplines and views,” the latter which was almost a deal breaker during Lyme language negotiations.

We are grateful to Senator Lamar Alexander (TN) and Patty Murray (WA), Senate HELP Committee Chair and Ranking Member, respectively, for helping to get this “Cures” bill passed.

AlexanderLamarLamar Alexander (TN), Senate HELP Committee ChairMurrayPattyPatty Murray (WA), Ranking Member

 

 

 

 

 

 

 

 

We also thank Senator Richard Blumenthal (CT) and Senator Kirsten Gillibrand (NY) for their support in earlier Senate efforts on Lyme disease.

2012 03 LDA BlumenthalSenator Richard Blumenthal (CT) with LDA membersGillibrandSenator Kristen Gillibrand (NY)

 

 

 

 

 

 

 

In the House, we thank House Majority Leader Kevin McCarthy, Chairman Fred Upton of the Energy & Commerce Committee, Congressman Christopher H. Smith, Co-Chair of the House Lyme Caucus, and Congressman Chris Gibson.


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House Adopted 21st Century Cure language including Lyme available NOW!

Update: Senate to continue consideration of its version of “21st Century Cures” legislation beginning 9:30am December 7. Go to senate.gov to watch proceedings.

Senate to act upon Cures Act today (Dec. 5th) at 3pm http://www.senate.gov/legislative/calendars.htm

Official language adopted 392-26 on Wednesday. Expected action in Senate early next week
Lyme language pages 115-120

https://www.congress.gov/114/bills/hr34/BILLS-114hr34eah.pdf




The Lyme Bill: Fact & Fiction

Background
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.

Summary
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 LymeDiseaseAssociation.org and also Lymedisease.org, 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.

Pat Smith, President, LDA




Asbury Park Pr: 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.Smith Head

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.”

Lyme disease affects nearly 400,000 people per year in the U.S., most of whom live in the northeast. For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult, and for thousands of folks, the symptoms continue for months or years.

To date, the influential Infectious Diseases Society of America has declined to recognize chronic Lyme in its clinical practice guidelines. Chronic Lyme advocates say that omission has caused a domino effect of needless suffering.

Representative Chris Smith (R-4th) has been pushing for a federal panel to address the issue since the early 1990s. The Senate is expected to pass the Cures Act, which got through the House by a vote of 392-26, in the coming days.

“Many have suffered for decades with this debilitating disease, only to be told that their illness does not exist,” Chris Smith said in a statement. “Enactment of the Cures package will move us one step closer to acknowledging and addressing the root problems of chronic Lyme.”

The issue was first brought to Rep. Smith’s attention by Pat Smith. In the late 1980s Lyme disease afflicted two of her daughters, one of whom missed four years of school. For years, she and Chris Smith (no relation) worked in vain to get federal recognition of chronic Lyme.

“The continued dissemination of outdated guidelines . . . has contributed to medical community’s denial of chronic Lyme disease and the denial of coverage by insurance companies of treatments for chronic Lyme disease,” Smith told the Asbury Park Press in a wide-ranging interview on the subject in May.

New Jersey ranks second among all states in Lyme cases, with 4,855 reported in 2015. Since the condition is known to be under-reported because it can be difficult to detect, the actual number of cases in the Garden State is believed to be closer to 50,000.

“Having knowledgeable people at the table will put the focus on the research, and there is a huge amount of brand-new research that shows there are (Lyme) cells that are left over after regular treatment,” said Pat Smith, who was involved in drafting the language establishing the working group. “This may be the root of the problem.”

In addition, she said, the Cures Act “will cause these federal agencies to have to talk about all of this in public.”

For both Pat and Chris Smith, it marks a victory after prior attempts to create a national task force were rejected.

“My original legislation ensured the individuals impacted by federal policies would have a seat at the table when the decisions are made,” Chris Smith said. “It has taken many years and several drafts, but thankfully today’s Cures package includes similar language that will begin the process of addressing the great unmet needs in the Lyme community in an open and transparent manner.”

For more information on the Wall-based Lyme Disease Association, visit www.lymediseaseassociation.org.

Staff writer Jerry Carino: jcarino@gannettnj.com

Please take time to go to article and post a comment

(Asbury Park Press 12/1/16, Jerry Carino)