LDA/Columbia Lyme Conf: Register Now Before Price Increase/Chronic Lyme Expert Panel Discussion

 
LDA NEWS & UPDATES 
September 13, 2017

 
Conference Rates Increase Beginning 9/22!
At the door registration is limited by space – Conference could sell out
 
REGISTER NOW! Take advantage of lower conference rates by 11:59pm EST Thursday 9/21
 
LDA/Columbia 18th Annual Lyme CME Conference
Lyme & Tick-Borne Diseases: What Clinicians Need to Know about an Expanding Epidemic Sept 23-24, 2017
Hilton Penns Landing, Phila., PA. Hotel info (click here)
 
Looking for the real facts on Lyme disease and other tick-borne diseases− what’s happening with coinfections such as Powassan, B. miyamotoi and with Bartonella? What’s new with rickettsial diseases and with tick bite causing meat allergy? Why do Lyme patients often have low blood pressure–how does Lyme affect the heart, breathing, and digestive process when the autonomic nervous system is disrupted? Can Lyme cause optic neuritis? How does inflammation from Lyme affect the brain and how can it be treated? Biofilms and persisters, what are they and are they causing chronic Lyme disease? What are some prevention strategies and have we learned new information from big data?
 
The conference is designed for doctors, nurses and researchers. Those who register for CMEs and CNE’s may receive credit, and the public is also invited to register. An included reception will enable conference attendees to network with the conference faculty. 
 
Thanks to support from the Steven & Alexandra Foundation and IGeneX Labs for this conference.
 

LDA/Columbai 2017 Conference Faculty
 
Click here for Printable Conference Flyer

 
Pre-Lyme Conference Video (3 min.) Click Above

 
Contagion® Peer Exchange® Panel Discussion Focusing on Lyme 
 
The entire Contagion® Peer Exchange® Panel discussion on Lyme is now available for viewing!
 
Why Are We At Odds Over Lyme Disease? Exploring the Impact and Controversy
Panel discussion on Lyme disease with top medical professionals and experts in the field
Panelists: Peter L. Salgo, MD; Robert C. Bransfield, MD, DLFAPA; Samuel Shor, MD, FACP; Leonard Sigal, MD; Patricia V. Smith, President, Lyme Disease Association
 
Read Contagion newsletter on the panel discussion
 
Note: The video below is one of thirteen segments from the Panel on Chronic Lyme disease.
Click a link above to watch all segments

 
Click below to watch Reaching a Consensus in Lyme Disease segment

 
Quote below is from the Reaching a Consensus in Lyme Disease segment:
 
“I was just going to say that, over the years, many times, we have asked to have more dialogue. We’ve contacted the IDSA, we’ve tried to sit down with them. We actually had them at our LDA Columbia CME Conference several years ago. It was the first time they were on the same stage. Believe it or not, we’ve advocated for that for decades, to get people together to have a discussion. But, unfortunately, there’s been unwillingness, and I was very happy that Dr. Sigal agreed to come in today and sit at the same table as us, because it doesn’t happen very often.”Patricia V. Smith, LDA President

 
ABOUT THE CONTAGION® PEER EXCHANGE® PANEL VIDEO
 
The Lyme Disease Association, Inc. (LDA) is pleased to announce an informative series of interviews on the topic of Lyme & other tick-borne diseases, created by Contagion®.  LDA’s President, Pat Smith, was invited to join with a panel of top medical professionals to debate and exchange information. Panelists include Peter L. Salgo, MD; Robert C. Bransfield, MD, DLFAPA; Samuel Shor, MD, FACP; Leonard Sigal, MD, and Patricia V. Smith. 
 
These videos provide an overview of Lyme disease, discuss the geographical spread that has occurred over the past several years and some of the reasons why it may be underdiagnosed.
 
Video Content
Why Are We at Odds Over Lyme Disease? Exploring the Impact and Controversy 
• Improving Care in Lyme Disease
• Reaching a Consensus in Lyme Disease
• Lyme Disease & Long-Term Antibiotics: Help or Harm?
• Research Challenges in Lyme Disease
• Exploring Controversies in Lyme Disease
• Lyme Disease: Theories for Longer-Term Manifestations 
• Trials and Tribulations of a Diagnosis for Lyme Disease 
• Emerging Tests for Lyme Disease 
• Challenges in Making a Lyme Disease Diagnosis 
• Reliability of Lab Testing for Lyme Disease 
• Early Vs. Late Lyme Disease Symptoms
• Who Gets It? 
• Understanding Lyme Disease and Where It’s Found

Contagion Video Segments
Click here for 9 educational video segments produced by Contagion®Live featuring LDA President, Pat Smith. 

 
Is the Medical Community Behind the Times When It Comes to Treating Lyme? by Pat Smith, published in Contagion®Live Click here

 
888-366-6611 Toll Free Hot Line

 

 




LDA/Columbia Conf.; Is your state on awareness list?; Is your Rep on Caucus list?

NEWS & UPDATES  
MAY 29, 2017

May Lyme Awareness: Is Your State Here?

States and counties throughout the US have proclaimed May Lyme Disease Awareness Month.

Many states and counties have taken steps to raise awareness regarding Lyme and tick-borne diseases.  Declaring “May Lyme Awareness Month” is one move to help remind people spring is here, ticks are out, prevention & proper education are your best tools to staying healthy.

Proclamations are issued by governors and resolutions are adopted by the legislature.  The LDA salutes and thanks all the governors, legislators, Lyme groups, and advocates who have helped raise awareness throughout the year.  

Your efforts make a difference!  See if your state is listed here.

Click here for states/counties declaring May Lyme Awareness Month

House Lyme Caucus – Is your Rep. On?

Lyme patients need help. The House Lyme Disease Caucus can provide us with the backing we need in DC to get things done. Let’s get our Congressmen in the US House of Representatives to sign up. It is a bi-partisan group working together in Congress to take action on Lyme & tick-borne diseases.

Under the leadership of Congressmen Chris Smith (NJ) and co-chair Colin Peterson (MN), it has initiated letters and actions to benefit Lyme patients, such as the inclusion of the monies for Lyme & tick-borne diseases into the Congressionally Directed Medical Research Program (CDMRP) and language and Lyme monies into appropriations over the years and initiated favorable legislation. Additionally, it has queried government agencies over policies not favorable to patients. This has reminded the agencies that someone is looking over their shoulder. Many meetings have been held and educational sessions in DC for Congress.

Click here to see if your US Representative or any US Representative who serves the state your group serves is signed up.If not, contact him/her immediately and ask, why not? Remind them the Lyme disease tick is now found in 50% of US counties and there were almost 400,000 cases in 2015. There are about 20 tick-borne diseases now in the U.S. being spread by at least 8 different ticks, not just the blacklegged/deer tick. Send them to the newly revisedLyme Disease Association LymeR Primer information brochurewhere they can read about them. Ask them what they have done about this emerging epidemic of tick-borne diseases where 30% of reported cases of Lyme are children ages 0-19.

Click here to read more about the Caucus

Ying Zhang, MD, PhD
Early Conf. Registration Has Begun!

Cutting Edge Research & Opportunity to Network with Researchers & Doctors

Looking for the real facts on Lyme disease and other tick-borne diseases− what’s happening with co-infections such asB. Miyamotoiand withBartonella? Why do Lyme patients often have low blood pressure–how does Lyme affect the heart, breathing, and digestive process when the autonomic nervous system is disrupted? How does inflammation from Lyme affect the brain and how can it be treated? Biofilms and persisters, what are they and are they causing chronic Lyme disease?

 
Sign up now online for the Lyme Disease Association (LDA) & Columbia University’s 18th annual conference, Lyme & Other Tick-Borne Diseases: What Clinicians Need to Know about an Expanding Epidemic, which will be held at the Hilton Penns Landing on the banks of the Delaware River, in Philadelphia, PA, on Sept. 23 & 24, 2017. Early bird prices are available now.
 
The conference is designed for physicians and researchers but the public is invited to register and all registrants can attend a reception and network with the conference faculty. Medical students/post docs are encouraged to apply for scholarships. CME credits will be offered by Columbia University to CME-registered physician attendees. The conference will feature 21 faculty consisting of clinicians and researchers from across the US and one from Canada.
 

The conference lectures detail very current research that could alter the field. The Keynote speaker, Nicole Baumgarth, UC Davis, will discuss Bb outmaneuvering the adaptive immune system. Other faculty include Garth Brooks, Drexel, bacterial plurality & chronic infections; Eva Sapi UNH, Lyme & biofilms; Ying Zhang, Johns Hopkins, persisters & Lyme; John Aucott, immune biomarkers & Lyme; Sheila Arvikar, Mass Gen Hospital, autoimmune disorders following Lyme; Brian Fallon, Columbia, also Conference Director, on behavioral & symptom metrics in Lyme; Robert Bransfield, Rutgers-RWJ, inflammation & neuro Lyme; Diego Cadavid, Harvard/Biogen, treatment of neuro Lyme and Adrian Baranchuk,  Queen’s University, Ontario, Lyme carditis.

 

More speakers are Maya Jerath, University of North Carolina, who discusses Alpha-gal meat allergy from lone star tickbite, Sam Telford,Babesia microti, duncani & B. Miyamotoi; Ed reitschwerdt, Bartonella; Bea Szantyr, Prevention of TBD; Monica Embers, Next Generation Diagnostics; Safwan Jaradeh, Autonomic Dysfunction & Chronic Illness; Lorraine Johnson, LymeDisease.org, Big Data on Lyme Research Priorities; a panel discussion of chronic Lyme; and several other speakers awaiting confirmation. Poster presenters will also present their studies and be available to answer questions.

 

Thanks to the support of the Cohen Foundation for scholarship and other support. Thanks also to IGeneX for commercial support of the program. Details can be found on the Lyme Disease Association website conference pages. 

 
Contagion Video Segments
 
Click herefor 9 educational video segments done by ContagionLive with LDA and Blog posted by Patricia Smith, President, Lyme Disease Association

888-366-6611  Toll Free Hot Line

STAY CONNECTED

 



Our Kids Need Your Help!

  February 2017

 
 
 
Our Kids Need Your Help!

 
“The Eternal Nightmare”

Girl in bed
We stand here…and wonder
why it is dark, 
A haze covers our lives,
severing us from the world. 
We search, grasp—there’s nothing to support us. 
No longer do we laugh; we only cry grown up tears. 
Our childhood is shattered, our souls stung and wounded. 
Will sun rays ever reach 
the children with Lyme? 

 
This poem, written by a teen who had chronic Lyme & seizures, paints the bleak picture children who develop chronic Lyme often face. 
 
Together, author Amy Tan and the Lyme Disease Association (LDA) have worked to bring those “sun rays” to the children of Lyme.  In 2003, internationally acclaimed best-selling author Amy Tan approached the LDA. Ms. Tan, herself a victim of chronic Lyme disease with neurologic symptoms, recognized that an early diagnosis and proper early treatment may prevent patients from developing the serious manifestations which often result from chronic Lyme disease.  She wanted to stop children from developing chronic Lyme and wanted the LDA to set up a fund for children seeking diagnosis and Lyme treatment.
 
See Video at End of Article
 
We worked together with the LDA attorney and a Lyme literate physicians to devise a fund which we named LymeAid 4 Kids (LA4K). We announced the fund’s creation with Amy Tan at the LDA/Columbia 2003 Philadelphia Lyme & Tick-Borne Diseases scientific conference. She presented the initial check on stage to the LDA President. 
 
Thanks to support from Ms. Tan and from people like you, since that time, the LDA has awarded $321,000, including $45,000 in 2016, for children from states all across the country, enabling children whose families face financial hardship to begin the process of a Lyme diagnosis and Lyme treatment. 
 
In 2015, according to CDC statistics, almost 400,000 new cases of Lyme occurred in the US. Children ages 5-9, 10-14 are at the highest risk of acquiring the disease, and the LDA has calculated that 30% of CDC reported Lyme cases are children ages 0-19, with 5% of the cases children ages 0-4. These are children who struggle every day to get out of bed, to shower or bathe, to do school work.  Sometimes, children with chronic Lyme are unable to do one or more of those things for weeks, month, or years of their lives. Many grow up not remembering a time they were well and were unable to have friends, to play, or to attend school. 
 
The fund is almost depleted. LA4K applications to help our children continue to arrive. Your help is needed now; your donations of any amount are welcome. Join us in our fight to provide an early diagnosis and early treatment for the hundreds of thousands of children afflicted with this debilitating disease. Together, we can help prevent children across the United States of America from living “The Eternal Nightmare.”  
 

More Info

 
SAVE THE DATE
LDA/Columbia University 18th Annual
Lyme & Tick-Borne Diseases Scientific Conference
Hilton Penns Landing, Philadelphia, PA
September 23-24, 2017

 
888-366-6611 Toll Free Hot Line

 
 



Lyme Success in 2016! Help Make 2017 Even Better

 
Wishing you good times, good cheer, a healthy New Year!

 
All of us at the Lyme Disease Association (LDA) thank you for your support in 2016.
 Let’s continue to work together in 2017 to find a cure.

 
 
Lyme Disease Association: Volunteers in Action to Stop Lyme Disease
 
Look what we have achieved with your support! 

  • Achieved Patient Voice in DC!
    President Obama signed into law favorable Lyme language creating a federal tick-borne diseases Working Group. Prior to the bill becoming law, Congress was about to act on unacceptable Lyme language. So working with other Lyme groups, the LDA itself directly negotiated by phone with House leadership–who simultaneously negotiated our requested language changes with Senate leadership. We were successful in restoring favorable language that seats patients, advocates, and physicians at the table with federal officials where they will be able to provide input into research priorities. LINK
  • Achieved research $$ in Congressionally Directed Medical Research Program 2016! LDA worked with Congressman Chris Smith to legislate the inclusion of tick-borne diseases into this program funded through the Department of Defense. LINK
  • LDA Research support recognized in 40 published scientific journal articles! In 2016, LDA reached a milestone in its Lyme research support, the 40th journal article was published containing research supported by the LDA. The 39th and the 40th article were research by Ying Zhang et al, a first step to identifying drug combinations for therapies to successfully treat chronic Lyme patients. LINK TO THE 40 ARTICLES
  • LDA 17th annual continuing medical education (CME) scientific conferences for physicians & researchers! Jointly sponsored by Columbia University, held in Minnesota, a 20 physician faculty presented to doctors/researchers attendees from across the country.  LDA provided scholarships to medical students thanks to A & S Cohen Foundation support. LINK
  • LymeAid 4 KIDS (LA4K) funds– 2016 awards ties 2007 awards for highest in a year, $45,000!    Since 2004 program inception, 2016 tied 2007 with highest awards to families for children to get diagnosed/treated for Lyme & tick-borne diseases.  A total of $321,000 has been awarded for medical care for children with Lyme & TBD in a fund started with input from author Amy Tan, herself a Lyme patient.  LINK
  • LDA “Seed Grants” produce results! LDA provides “seed” grants, smaller grants to researchers to enable them to get data to apply for larger grants from the government or large foundations. Prior years’ seed grants to Drs. Brian Fallon, Columbia University, and Steven Schutzer, Rutgers, resulted in significant NIH funding for each and a treatment trial and extensive genome sequencing project respectively. Dr. Zhang received “seed” grants from LDA/others & was able to get a large grant from the Cohen Foundation. LINK
  • Education/sponsorship grants! To date, LDA has provided 112 education/sponsorship grants, allowing others to provide programs like the First Rocky Mountain Lyme Forum held in Colorado by Biting Back, Colorado; Infectious Causes of Mental Illness: The Impact of Infectious on the Brain by Lyme Connections in Connecticut for psychiatrists, therapists, and social workers; and a Maine conference for public. LINK
  • Educating the public! The LDA presents public presentations on the spread, diagnosis, treatment, patients issues, policy making affecting Lyme. In 2016, LDA has been to Maine, Washington, DC, New York, Colorado, New Hampshire, Pennsylvania, Arizona, New Jersey, Vermont, Minnesota, and Massachusetts (end of 2015 in person testimony, 2016 written testimony/support for 2016 passed legislation).
  • Automatic doctor referral! The LDA maintains a national online doctor referral for Lyme literate physicians. Tens of thousands of members of the public have used the free service. LINK
  • Distribution of LDA brochures/literature! The LDA has provided ~2.75 million pieces of literature to the general public, officials, doctors and other health care providers, schools, the military, corporations. This is accomplished through website orders, distribution at events, and through the LDAnet umbrella network organized by LDA, which has over 40 groups nationwide participating—working together to educate and to find a cure. Most literatures is free, although brochure shipping now requires postage fee. LINK

 
Please remember the Lyme Disease Association when considering your
end-of-year gift giving. Your support ensures continuation of our programs.
 
LDA has achieved a Gold level status on GuideStar for commitment to transparency, and you can feel secure your donations will be used wisely; 
97% of donations to the LDA go directly to its programs.

 
Lyme Disease Association, Inc.
888-366-6611 Toll Free Hot Line

 




Lyme Bill Language Passes Senate & Goes to President Obama!

 

LDA: All Volunteer National Non-Profit
Changing the Face of Lyme through Research, Education & Patient Advocacy
December 7, 2016
BILL GOES TO PRES. OBAMA TO SIGN

 

Lyme Language Passes  

 

Senate 94-5! 

Lyme Patients Have Seat at Table!
 
The US Senate passed the 21 st 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.

Lamar Alexandar
Lamar Alexander _TN__ Senate HELP Committee Chair
Patty Murray
Patty 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.
Senator Richard Blumenthal _CT_ with LDA advocates

  

Gillibrand
Senator Kirsten 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.

For more information about this bill go to  www.LymeDiseaseAssociation.org

Help Us Find A Cure &  Support Those with Chronic Lyme
Donate Today!
 
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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
GROUNDBREAKING NEWS:

 
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: jcarino@gannettnj.com) 
 

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 House.gov. Go to House.gov 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, LymeDisease.org
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, LymeDisease.org
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: http://amendments-rules.house.gov/amendments/UptonCURES112916152701271.pdf

The amendment makes edits to the text posted here:  http://docs.house.gov/billsthisweek/20161128/CPRT-114-HPRT-RU00-SAHR34.pdf

 

The Lyme Bill: Fact & Fiction

Pat Smith, President, LDA

Congressman Chris Smith
 Pat Smith, President, LDA

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. 

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LDA: 2015 US Lyme Cases Approaching 400,000

 

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

News & Updates                          November 2016
LDA: 2015 US Lyme Cases Approaching 400,000

The Lyme Disease Association (LDA) reports that the total number of Lyme cases in the US is now approaching 400,000 per year.
 
The report is based upon the just released CDC’s MMWR final reported Lyme case numbers for 2015.  The 3 states with the highest case numbers are from the Mid-Atlantic region: Pennsylvania, New Jersey and New York.  These three states constitute 48% of the Lyme case numbers in the US.  LDA president Pat Smith said “Lyme case numbers continue to surge, yet government is doing little to combat this massive epidemic, which destroys families and costs lives.”

The LDA has ranked the top 15 states based on those CDC reported Lyme case numbers.

 

The table below has state, followed by CDC reported number, and the number adjusted by a factor of 10 for underreporting.
 
Total US 38,069——————————————————380,690

 

 
1. Pennsylvania 9,048———————————————– 90,480

2. New Jersey 4,855————————————————- 48,550

3. New York 4,314 (combined NYC & upstate) *————  43,140

4. Massachusetts 4,224——————————————– 42,240

5. Connecticut 2,541———————————————— 25,410

6. Wisconsin 1,894————————————————– 18,940

7. Minnesota 1,805————————————————– 18,050

8. Maryland 1,728————————————————— 17,280

9. Virginia 1,539——————————————————15,390

10. Maine 1,201—————————————————– 12,010

11. Rhode Island 904———————————————— 9,040

12. Vermont 710—————————————————— 7,100

13. New Hampshire 529——————————————– 5,290

14. Delaware 435—————————————————-  4,350

15. Iowa 318———————————————————– 3,180

* Many counties (19 in 2014) in New York State investigated a sample of positive laboratory results. The number of Lyme cases was then extrapolated to generate estimates of the total number of cases in that particular county. The CDC says it cannot publish averages, thus many counties in NY do not have their numbers reported out by CDC.  The LDA does not know how many NY counties in 2015 are contained in the CDC numbers above.

 
 
2014 US Case Map

 

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LDA Milestones & Updates

Happy Thanksgiving & Holiday Season
Ying Zhang, MD, PhD
November 2016
Click here to see all the articles with abstracts.
(Note: Dr. John Aucott, Johns Hopkins, who also presented at the LDA/Columbia conference, just received a $6 million grant from the Cohen Foundation for his work on Lyme).
LYMEAID 4 KIDS (LA4K)
OTHER PROGRAMS
The LDA maintains a national online doctor referral of Lyme literate physicians that can be accessed through its website. Tens of thousands of members of the public have used the free service.
The LDA has provided ~2.75 million pieces of literature to the general public, officials, doctors and other health care providers, schools, the military, corporations. This is accomplished through website orders, distribution at events, and through the LDAnet umbrella which the LDA organized and which has over 40 groups nationwide participating—working together to educate and to find a cure. Most of the literatures is free, although shipping for internet orders now requires a postage fee.
Shop & Raise Funds for a Cure!




LDA/Columbia Upcoming Lyme Conference – Video Introduces Latest Research!




CDC Reduces Chronic Lyme Numbers – Early Conf. Registration Ending Sun!

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

News & Updates                        September 2016
Don’t Delay – Early Registration Ends Sunday 9/11!

 
 

  

Take advantage of the lower conference rates now – early registration ends 11:59pm EST on Sun 9/11
Lyme & Tick-Borne Diseases: New Strategies to Tackle an Expanding Epidemic
St. Paul, Minnesota
October 15 & 16. 
Hotel room block ends 9/15 or earlier if full (more info)
The conference is designed for doctors and researchers who can receive CMEs for attendance, but the public is also invited to register. An included reception will enable conference attendees to network with the conference faculty. 

Scholarships for med students/post docs/NP doc candidates/others are still available thanks to generosity of the Steven & Alexandra Foundation. (more info)

The Minnesota Lyme Association (MLA) is offering to sponsor the attendance of MN public health officials at the conference. (more info)

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 Pfeiffer 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

Delaware Bills Focus on Tick Control & Educating Doctors

_L to R_ Sen. Ernie Lopez_ Rep. Pete Schwartzkopf and Gov. Jack Markell. Cape Gazette_Photo Credit – Chris Flood

On 8/29/16, Delaware Governor Jack Markell joined Speaker of the House Rep. Pete Schwartzkopf (D-Rehobeth) and Sen. Ernie Lopez (R-Lewes) for the signing of 2 Lyme disease bills.

These bills are a direct result from the findings of the June 1, 2015 Lyme Disease Prevention Task Force Report.
This Act enforces the task force recommendation of an Integrated Pest Management strategy incorporating acaricide use, biological controls, management of tick-host animals and backyard habitat management. 
An Act to amend Title 16 of the Delaware code relating to the creation of an oversight board to educate health care professionals about Lyme disease.

Delaware declared May 2016 Lyme Disease Awareness Month and sent LDA the resolution (click here for article
Lyme on Agenda At Women in Govt. Conference

Pat Smith
Pat Smith LDA

LDA President Pat Smith has been invited by the Women In Government Foundation, Inc. (WIG) topeak at its 17th Annual Southern & 18th Annual Eastern Regional Conference (9/29-10/1) in Bar Harbor, Maine. WIG, Washington, D.C., “is a national, non-profit, non-partisan organization of women state legislators that provides leadership opportunities, networking expert forums, and educational resources to address and resolve complex public policy issues to all 1,783 women state legislators.” http://www.womeningovernment.org/about-us

 
On the WIG agenda for September 30, in a session entitled, “How to Reduce Negative Impact of Lyme Disease,” Ms. Smith will discuss issues related to Lyme which could benefit state legislators across the country in their decision making. (Agenda)
The LDA President will be part of the Lyme panel speaking at the conference which also consists of Beatrice M. Szantyr, MD, Internal Medicine, Pediatrics & Adolescent Medicine and Paula Jackson Jones, President, Midcoast  Lyme Disease Support & Education, a partner with the Lyme Disease Association LDAnet Umbrella group.
Ms. Smith has been twice invited to speak at the Midcoast Lyme Disease Support & Education public Lyme conference held in Maine, and both times, a number of state legislators were present at the well-attended conferences.  Maine State Representative Deborah J. Sanderson (R-Chelsea) approached the LDA President at the most recent event about possibly speaking at the WIG conference and followed up through Paula Jackson-Jones of MidCoast who has coordinated with the legislator.

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