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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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. 

STAY CONNECTED:  Like us on Facebook Follow us on Twitter View our videos on YouTube Gray
Lyme Disease Association, Inc., PO BOX 1438, Jackson, NJ 08527
 




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




MA Lyme Leg. Task Force Reply to MMS Bill Opposition

The Massachusetts Medical Society has shifted from a neutral stance on the pending patient supported Lyme legislation which would require insurers to cover longer-term Lyme treatment to one of opposing the bill. The House passed version is supported by Lyme groups, including the LDA, which supplied testimony is support of the precursor to these current bills Click Here LDA Testimony.

The letter from the Massachusetts Lyme Legislative Task Force clearly delineates the issues surrounding House FY17 Amendment # 729, H 4198 and S 2231 (all have identical wording) and why it is imperative for the legislature to pass them.

The LDA and the MA Task Force do not support the Senate FY17 Amendment #427. Click Here for MA Leg Task Force Letter




ME Lyme Bill Passes Into Law

“An Act to Improve Access to Treatments for Lyme Disease” passed both houses of the Maine legislature and was given to the Governor who did not veto or sign the bill. Under Maine law, that means the bill becomes law. The bill provides for doctor protection for doctors who prescribe long term treatment for Lyme disease.  Congratulations to the Maine advocates who worked so hard to make this happen!  The LDA provided testimony favorable to bill passage.

SUMMARY

This bill prohibits the Board of Licensure in Medicine from disciplining a physician or revoking or suspending a physician’s license for prescribing, administering or dispensing long-term antibiotic therapy to a patient with acute, persistent or chronic Lyme disease if the therapy was pursuant to a treatment plan recommended by the United States Department of Health and Human Services, Centers for Disease Control and Prevention that considered the patient’s individual circumstance or was in the best judgment of the physician with respect to the particular patient or special clinical situation.

Click here for testimony
Cick here for bill language




NY Governor Signs Lyme Bill

Governor Cuomo signed the Lyme doctor protection bill into law in NY. The legislature and Governor have agreed to some kind of amendment, however, and that amendment has not yet been made public. The action on the amendment (Dec 17, 2014: APPROVAL MEMO.27) is noted on the following website where the bill history and text are noted http://open.nysenate.gov/legislation/bill/S7854-2013. As soon as LDA knows the content of the memo and its significance, we will post it.

2014-CuomoClick here to read Poughkeepsie Journal Article – Cuomo Signs Bill Safeguarding Lyme Treatments

Click here to read Assemblymember Didi Barrett’s Press Release

Click here for LDA’s letter to Governor Cuomo




PA Governor Signs Lyme Bill

On Nov. 17, Governor Corbett held a ceremonial signing of Senate Bill #177, The Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention Act. The bill includes the first tick surveillance program in Pennsylvania, educational access for affected school children, a prevention focus in the schools regarding children’s tick bites on school property, and a new task force to provide recommendations to enhance prevention, educate doctors on current research on these emerging diseases, improve the patient experience, and provide access to more appropriate care in PA.

The history of bill passage in PA goes back eleven years to introduction of bills that would have provided funds for education, prevention, and treatment and doctor protection and later for mandatory insurance coverage. The LDA testified many times in PA on the various bill iterations. This latest effort was led by Julia Wagner, President, PA Lyme Resource Network (LDA is a member of that organization) and aided by Lyme Disease Association of Southeastern Pennsylvania, an LDA affiliate. All involved deserve kudos for their work for Lyme patients.

2014 PA GovCorbett BillSigningPictured in the first row from left are: Peter Wagner, Senator Stewart Greenleaf (Sponsor of the Senate bill), Governor Tom Corbett, Representative Matt Baker (Sponsor of the House bill), Sean Robinson, Lisa Gaffney, Josie Gaffney, and Kelly Locy. Second row from left: Sarah Wagner, Eric Pauley (Executive Assistant, Senator Greenleaf’s office), Julia Wagner (President PA Lyme Resource Network), Doug Fearn of West Chester (President Lyme Disease Association of SE PA), Heidi Healy, Nicole Sidle (PA House Health Committee), Elizabeth Yarnell (Legislative Analyst Human Services Committee, PA House), Amy Tiehel (Board of PALRN and Region Leader Delaware County Lyme Support Group), Linda Olley, RN, Chad, Katie, and Kim Robinson, Bob Holtzman.




House E & C Committee Passes Lyme Bill

 

The LDA is pleased to announce that the Lyme bill, HR 4701, July 23, 2014 version, passed with voice vote out of the Energy & Commerce Committee, today, July 30. 

GibsonGreenTie“I am delighted to announce this important milestone in the years-long effort to combat Lyme and tick-borne diseases,” said Congressman Chris Gibson (NY-19). “This legislation is the first-ever standalone bill to address Lyme disease. I deeply appreciate the support and advocacy of the many citizens who speak out on this issue every day, especially Pat Smith and the members of the Lyme Disease Association. I look forward to passage of this bill by the full House, but I will not relent in our fight for improved research, treatment, and prevention of this public health scourge.”

The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress including “a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections…. ”    

The battle for passage of this bill began early this year when LDA met with House leadership to present objections to a vector-borne diseases bill from being introduced in the House Health Subcommittee that would have covered Lyme disease but had no representation at all from patients and physicians and would not have covered other tick-borne diseases because of incidence rates.  The LDA provided language changes which provided patient input and transparency. The bill was brought before the Subcommittee, but an amendment in the nature of a substitute was offered and passed out instead—a substitute that was dangerous for patients.

The LDA led a nationwide campaign to bring back patient friendly language and had a letter signed by 154 groups nationwide stating what was necessary from a patient perspective which was sent to all of the Members of the Energy & Commerce Committee. We then worked with Mr. Gibson and the Committee to change the language to produce a bill which will help provide a research agenda for Lyme and other tick-borne diseases including evaluating chronic or persistent infection and co-infections.

“This bill provides recognition that research is needed for Lyme disease and all tick-borne diseases and provides for a structure where the ultimate stakeholders, Lyme patients, will finally have a voice at the table in a transparent setting” said Lyme Disease Association President Pat Smith. “Additionally, the inclusion of  ‘chronic or persistent infection’ finally allows that to be more fully examined as part of the federal research agenda.”

The LDA thanks Mr. Gibson, bill sponsor; Mr. C. Smith; and Mr. Upton and all of the Committee members who supported the bill. We also thank our partner groups who were instrumental in the effort to pass this legislation, and all Lyme groups across the country, patients, and other groups who worked on this effort. The next step for the bill is to go to the House floor, which will probably occur sometime after the summer Congressional recess.


Links to video of bill passage

The US House Energy & Commerce website has a video of the two day hearing on its website. The top box is day one which only includes opening statements on all the bills to be heard. Those relevant to HR 4701 in Day 1 (7/29) can be found at approximately the times listed below:

Mr. Waxman 5:25-6:35

Mr. Pitts 9:45- 10:30

Mr. Pallone  15:00-

Mr. Griffin 29:48-

Day 2 video (7/30), bill voting, is in the second video box, begins at 33:20.

http://energycommerce.house.gov/markup/markup-hr-4067-hr-hr-3522-hr-4701-hr-3670-hr-5161-hr-1575

 __________________________________________________________________

Link to legislation passed 7/30/14,  HR 4701 July 23 version

http://docs.house.gov/meetings/IF/IF00/20140729/102597/BILLS-113-HR4701-P000373-Amdt-3.pdf

 _____________________________________________________________________

Bill History

Link to Bill History

Click here for LDA letter to Energy & Commerce




Federal Bill HR 4701, July 23rd Version

The Lyme Disease Association (LDA) is supporting HR 4701, July 23 version, no amendments, which will see committee action Tuesday 29 & Wednesday 30. The bill sets up a working group with patients and physicians at the table and contains language requiring the Secretary of HHS to submit a strategic plan to Congress including “a plan for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections…. ”

Click link below for supported version

http://docs.house.gov/meetings/IF/IF00/20140729/102597/BILLS-113-HR4701-P000373-Amdt-3.pdf


FinishedACTION FOR YOU TO TAKE IMMEDIATELY: Lyme leaders, patients, & general public: The LDA is seeking immediate action. Please contact the Democratic  members of the Energy & Commerce Committee. Tell them to support HR 4701, July 23 version, with NO amendments. There is a short window of time (July 28-July 30) to influence the passage out of the Energy & Commerce Committee of this important bill.

PLEASE DO THE FOLLOWING:

  • Click on this link. Pick out the democratic members (D) and call or fax them.
  • Tell Democratic Committee Members the following:

Pass HR 4701, July 23 version, with NO amendments *

*(Please use exact underlined words when referring to bill.)

This bill allows Lyme patients, Lyme non profits, and physicians treating Lyme & tick-borne diseases to sit at the table of the working  group. The Strategic Plan for Lyme & tick-borne diseases research calls for a plan for improving outcomes of Lyme and other tick-borne diseases. Thank you.


HISTORY of LYME BILLS: For decades, Lyme disease patients, advocates, treating physicians, and many researchers have pushed for federal legislation that would unshackle Lyme disease from entrenched biases that have been holding back progress on the science of Lyme.  Patient-supported Lyme legislation was again introduced early this Congress in both the House and Senate, legislation designed to provide broader input to federal research agendas and to help move the science forward. The Lyme community was then chagrined to learn that a vector-borne diseases (VBD) bill was going to be introduced and passed through the House instead of the other pieces of patient-vetted legislation. The community’s fear was that the language of the VBD was too diluted and would be harmful to Lyme disease patients. In a sincere effort to cooperate with House and Committee leadership, members of the Lyme community worked tirelessly to improve the language of the VBD bill to ensure that it would be helpful to Lyme stakeholders.  The resulting bill – HR 4701 – while not ideal, was strengthened to ensure it would provide meaningful benefit to Lyme and other TBD stakeholders.


WHAT WE WANTED: The original HR 4701 (below), as introduced, created an advisory committee that would operate under the decades old Federal Advisory Committee Act (FACA), which stresses transparency and accountability.  Congress passed FACA, because many believed that too much of the government functioned behind closed doors and did not sufficiently represent the public interest.  FACA requires committee membership “to be fairly balanced in terms of the points of view represented and the functions to be performed.”  Under this original HR 4701, working groups/advisory committees would provide a seat at the table for experienced physicians, non-federal scientists, and patients and family members, and advocates.   Any existing VBD working groups also would be required to operate under FACA.    

Bill Favorable to Lyme patients

The original bill introduced May 24th in the US House “HR 4701” (Gibson) provides:

Patients with a seat at the table
Transparency in government (Covered under FACA)
Open meetings
Balanced representation


WHAT CONGRESS SUBSTITUTED: The “Amendment in the nature of a substitute to HR 4701,” which was passed June 19, 2014 by the Health subcommittee, simply institutionalizes the existing HHS internal Lyme disease and other TBD working group.  The only members of the working group are HHS employees, no patients, advocates, private physicians or non-federal researchers will be working group members, although it directs the committee to “consult with” outside parties.  The HHS working group also is not under FACA─ its meetings, papers, records, minutes, etc. may be kept under wraps.   A single public meeting before the issuance of a report every five years does not provide a reasonable level of public input and transparency and likely occurs after the committee deliberative work is done. It is disgraceful that the substitute bill retains the words “Accountability and Transparency” in the title because the bill makes great efforts to purge itself of those attributes. 

Unfavorable to Lyme patients

The revised June 19 bill “Amendment in the nature of a substitute to HR 4701″(Gibson, Pitts) provides:

No patient seat at the table
Permits secret meetings (Not covered under FACA)
Provides no balanced representation on the working group
Permits the old boys network to operate without oversight


THANKS TO LYME GROUPS: The LDA requested Lyme leaders to sign on to a letter against the Amendment in the Nature of a Substitute to HR 4701. Letter with signups was sent 7/7/14 to Energy & Commerce with this note: “Attached please find a letter stating the position of 154 groups from over 35 states across the US opposing the Lyme disease legislation, ‘Amendment in the Nature of a Substitute to HR 4701’ that was passed through the Energy & Commerce Health Subcommittee on June 19, 2014. This information was collected over an approximate three-day period over the July 4 holiday weekend. We look forward to your response. Thank you.”

As a result of the letter, the bill sponsor, working with LDA and others, was successful in obtaining language that accomplished the goals of having patients at the table with a working group that operates in a transparent fashion. It also includes “chronic or persistent infection and co-infections” language. (Go to top of page to see new version.)

Click here for LDA letter to Energy & Commerce


House E & C Committee Passes Lyme Bill , HR 4701, July 23, 2014 version

Victory in the US House of Representatives: Lyme bill, HR 4701 – “Vector-Borne Disease Research Accountability and Transparency Act of 2014”