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

01 December 2016

 

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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