Topic: July 28 -30 CALL ON FEDERAL LYME LEGISLATION
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Your help is needed to make sure the right version of this law is passed, to include patient and physician representatives. Without them, it will just be the same old tired faces saying the wrong things.
PS This link isn't working either!! But it was working a few minutes ago (they are both the same link). I emailed someone to try and get the webmaster to fix it. I assume that it is flooded. Don't give up!! Arghh!
PPS When you do get on, it seems complicated, but isn't. Go to the part where you can check if your senator(s) have signed on or not---only 12 have. If not, click on the link to contact them. You have to click "next" a few times to get to it.
I wish they'd made it simpler. I requested that in the emails. Never a dull moment. But it really isn't that difficult. Please be persistent.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
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.... "
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.
• Pick out the Democratic party 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.
A 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 19th 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 this post to see new version.)
The mission of LymeInfo is to keep you informed of issues that might be of interest to Lyme disease patients. Postings are not meant to imply that we agree with the content of all items we distribute.
posted
Comment from Phyllis Mervine of Lymedisease.org on this important effort:
This is the chance we've been waiting for, folks, for about 15 years. This bill finally gives patients a seat at the table. No more smoke-filled back rooms, but daylight and a voice for patients. It won't solve all our problems but is a big step forward. The committee will be doing final markup on Tuesday (today) and Wednesday.
Go to the website below for phone numbers. Make your call ASAP. It's important that everyone do this. The bottom line is we want
I'm sorry our website crashed today. It is up and running again, but use the link above for quick action!
Let's ring those phones off their hooks and let them know there are a lot of us out here who care about this bill. Don't worry about giving a complicated message. The most important thing you can say is "Please give us HR 4701, July 23 version, with NO amendments."
Bill language and details of its history are on the LDA website at the link above. --
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Done!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I did this. It took me all of 12 minutes to call all the democrat congresspeople on Karla's link above and ask them to please pass HR 4701 July 23 version with NO amendments (Lyme and tick born diseases bill with NO amendments).
A few of them asked me if I was their constituent, and I told them no, but I cared and to please add me to their tally. They said no problem. It was super easy, and I did it in between taking my lyme herbs (lol)!
Thank you Karla for posting this, you rock (you too Poppy)!
Here again is Karla's link of congresspeople who will vote on this:
Go for it people, it is so easy! Remember to reiterate NO AMENDMENTS.
TIME IS OF THE ESSENCE HERE, PLEASE JUMP IN TO HELP!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, wow, Catgirl, it didn't even occur to me to call the Senators in other states that haven't signed on----duh!!!!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
These simplified instructions and contact info was just posted on Lymedisease.org Facebook
SHORTCUT TO CONTACTING CONGRESS If you just want to follow the leader on supporting the important Federal bill giving patients a seat at the table, here's the list to call - Democrats all because that's where we're concerned more amendments might originate.
The message is, "Please ask the Congressman (woman) to support HR4701 as amended July 23 without any more amendments."
We ALL have to do this today! Phone calls are very quick. Take a few minutes and do it now, please! Tell them
"HR 4701, July 23 version, with NO amendments."
Here is the list. Don't try the Contact Form unless you are in that member's district because they make you enter your ZIP code. Contact your own representative first, then call as many others as you can. You will talk to staff, not the congressperson him/herself!
posted
Success! The supported version July 23rd version of H4701 was passed out of the House Committee on Energy and Commerce this morning! Thank you to all who called. Together we can make a difference!
posted
Forwarded newsletter from the Lyme Disease Association:
House E & C 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.
Representative Chris Gibson "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 Bill Information
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
posted
Thanks to Pat Smith for working tirelessly to get a favorable federal bill introduced and passed in committee.
Thanks to one of our true Lyme warriors in Congress, Representative Chris Gibson! This man understands our issues and has demonstrated his sincere desire to get real help for Lyme patients at both the state and federal level.
In addition to sponsoring this important federal bill, he has been active in expressing his support for the NYS Lyme Disease Protection Bill at critical junctures to both the NYS Senate and Governor Cuomo.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
YAY!!!!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic