Attached is an appeal inviting people from all across the country to contact their U.S. Senators requesting their support for Senate bill S.1503, which provides help for the victims of Lyme and other Tick-borne diseases (TBD).
The House of Representatives recently passed their bill (H.R.6), and we now need to prevail upon our senators to ensure that the Senate version of the bill includes provisions for Lyme and TBD.
Please join us in circulating this message far and wide. Our goal is to have this email cover the country, and ask patients, advocates, physicians, families, and friends to SPEAK UP about the desperate need to find solutions to Lyme disease.
Each of our 100 U.S. Senators needs to be contacted and each needs to recognize the urgency of this issue in their state and in this country. Senators from across the U.S. should be able to say, “YES, I've heard about this issue from my constituents" not “I haven't heard about this from my constituents, so it is not important to them."
We have momentum with the House bill passing, and we have a short window of opportunity. PLEASE FORWARD THIS EMAIL TO YOUR FAMILIES, FRIENDS, AND COLLEAGUES AROUND THE COUNTRY. ASK THEM TO USE THIS LINK FOR MORE INFORMATION AND TO REQUEST THIS ATTENTION FROM THEIR SENATORS.
Let your voice be heard! Write to your senators today encouraging them to support S.1503 by clicking on this link:
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Coalition for Federal Lyme Disease Legislation
August 12, 2015
Dear Colleagues:
As you know, the House of Representatives passed H.R.6, dubbed The 21st Century Cures Act. This legislation, unique to the House of Representatives, calls for the formation of an Interagency Lyme and Tick-Borne Diseases Working Group to inform and guide national policy on TBD's. We all worked together to get this House bill passed, and we were successful!
Now we need to direct our attention to the Senate, where similar legislation is being considered. Senator Ayotte (R-NH) and Senator Blumenthal (D-CT) have introduced S.1503, The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015. This bill, like the House bill that already passed, calls for increased public awareness and strengthened efforts to combat tick-borne diseases, a significant and escalating threat to public health. Passage of this bi-partisan Senate bill and signature by the President, will not only help ensure that the necessary resources are dedicated to fighting tick-bone diseases, but will also give us access to the policy process, where we previously had none.
Whether the Senate chooses to consider S.1503 as a stand-alone bill or ultimately decides to incorporate it into a multi-issue bill currently being developed (tentatively named “The Innovation Act”), will be their decision. Our role is to encourage the inclusion of the language in S.1503 in either format.
We believe the entire Lyme community shares a common interest: to have our voices heard. We have at hand a tremendous opportunity. Thus we invite you to join us in a unified effort on a national scale, as we call for every U.S. Senator to support (co-sponsor) S.1503.
Your input and support are vital to the success of this critical effort. We believe that failure to pass a bill with this important Lyme language will terminate the momentum we currently have on Capitol Hill. We urge all advocacy organizations and individuals to join forces so we can move this legislation forward.
We encourage your participation by sharing the below link with advocates, patients, friends, and family across the USA. This link will facilitate easy communications with senators.
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This is the time for the entire Lyme Community to collaborate to push forward this legislation. Our senators need to hear that that S. 1503 is important to their constituents who are suffering from the Lyme epidemic.
Though this effort to start a national campaign to gain support for the federal Lyme legislation in the Senate (S.1503) originated in New York, we now have the support of the Lyme Disease Association, Nat Cap Lyme, and many (but not all) of the members of PAL (Partners Against Lyme). We are in conversation with other national patient-supported Lyme advocacy groups in an effort to gain their support as well.
Please join us and send these messages out to your email lists, friends, and family.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Further information about why passing the federal Lyme bills are so important:
For the first time, the legislative branch and the executive branch (once the law is signed by Obama) of the U.S government are directing the federal agencies to develop a plan and fund a research agenda for the purpose “of 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, and other neglected areas of research, such as direct-detection testing that can distinguish current from past infection, and developing a reporting system for cases which do not meet the CDC’s surveillance criteria.
Denial of chronic Lyme disease by the IDSA has been the primary reason that Lyme disease research continues to receive a pittance of funding from the federal government. I have heard from reliable sources that on several occasions the director of National Institute of Allergy and Infectious Diseases Section of the NIH and other officials at the NIH have stated that they will not allocate more funding for a disease that “can be cured with three weeks of antibiotics” and that the IDSA claims “does not exist.”
For the first time patients, patient advocacy groups, treating physicians, and researchers representing a balanced perspective will have a place at the table with the federal agencies in planning a national agenda for Lyme disease regarding research priorities, and physician education regarding testing, diagnosis, and treatment of Lyme disease.
A similar federal panel was formed for AIDS and look at where funding and recognition for AIDS is now compared to Lyme disease. AIDS has 3 billion a year in federal funding compared to 23 million for Lyme disease. The bulk of the Lyme money has gone towards “dead-end” research by the IDSA gang, because the granting process is now being entirely directed by a corrupted peer-review process. It is vitally important that patients and their treating physicians have a voice in the direction of federal research for Lyme.
The Working Group will be subject to the “Federal Advisory Committee Act (FACA), which requires transparency in operations. Under FACA, meetings must be publicly announced, open, and provide an opportunity for divergent viewpoints. Minutes, as well as other records, and reports must be made available to the public. FACA also stresses the importance of having a fairly balanced membership in terms of points of view represented.”
We all know that right now all decisions pertaining to the direction of the federal government in relation to Lyme disease are completely closed to patients, their treating physicians, and the public. It’s good-old-boy in-group politics as usual with little or no public accountability. That will not be possible with this working group. In my understanding, you, any Lyme patient, treating physicians, and the press will be able to attend the meetings and/or read the minutes of what goes on there.
FACA and this bill also protect the rights of any member of the working group to include a minority opinion in the biannual reports required by the bill.
KarlaL
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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LymeDisease.org has set up its own VoterVoice for contacting your elected representatives.
Forwarded message from LymeDisease.org:
Senators Ayotte (R-NH) and Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503).
Please contact your US senators and ask them to support and co-sponsor this important bill.
Our Voter Voice system makes this easy. After you enter your information, the system identifies your senators and sends them your message. Click here for more details.
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Forwarded message from Phyllis Mervine of LymeDisease.org
This is really important
It will just take a minute!
We need a flood, a surge, and tsunami of public passion! You must help! A few advocates or group leaders just can't do this without you. Everyone has to take responsibility. Our bill will live or die based on how many of us do this.
We need each of you to contact your US senators and ask them to support and co-sponsor a bill that would establish an advisory committee and give federal funds to Lyme and tick-borne disease prevention, education and research.
We have made this as simple as possible. You can read the bill text or not. It's all there. All you have to do is put in your ZIP code. If you can't think of a message, just tell them you have Lyme or your mother has it or your kids and ask them to co-sponsor S. 1503. If you want to say more, go ahead. The aides who get these emails will keep a tally and report to the Senator, "We got 2 emails, 10 emails, 50 emails, 100 asking you to support S. 1503." Let's give them thousands!
Numbers count.
If we don't pass this bill this time, we might get nothing -- again. Twenty, thirty years of nothing. What's one more?
NO! Don't say that!
I will remind you, nag you, plead and beg you to do your part. Please reply to this email when you have sent your letter. This may inspire others. It only takes a minute or two, but may mean we can help save more lives down the road. Don't let anyone portray us as apathetic losers. Let's fight for this one like we've never fought before.
Here's the link, do it now. Then tell us you stood up and played your part.
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Forwarded message (to the state yahoo online support groups) from Phyllis Mervine of LymeDisease.org,
I know you meant to and you just forgot, so take this as your reminder and let's have another surge on Voter Voice asking Senators to COSPONSOR S. 1503, *the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015. *.
-- to learn more about S. 1503 and send your letter to your US senators.
The CDC says there are 300,000 new cases of Lyme disease every year, and that's just ONE year. We have not had nearly that number using our EASY Voter Voice tool to contact your Senators about the Lyme bill! Thank you if you DID write. There were too many for me to continue my original plan of giving you feedback every few days, but that is a whole different matter from how many we need to turn the tide in Washington. I am sure many Senators have not seen even a blip on their radar. Even those who have responded so far have not given any sign that they will cosponsor the bill. We want them to!**
Senators have sent people a variety of form letters that don't seem to indicate much awareness of the scope of the problem. CA Senator Dianne Feinstein's staff apparently is not aware that recent studies by the CDC suggest there are 300,000 and possibly as high as 420,000 cases a year. They think there are only 30,000 cases nationwide every year.
It's our job to give them better information. If you want to include some statistics, check out Lorraine's BLOGS
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Is there a sample letter available to cut and paste? I'm having cognitive problems, it would help to have a letter that's been composed already.
Thank you.
Posts: 873 | From WA | Registered: Dec 2005
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LymeDisease.org has now added sample text to their VoterVoice letter. The Coalition for Federal Legislation VoterVoice letter also has sample text:
Please add a short personal statement about how Lyme disease has effected your life.
KarlaL
LymeDisease.org: Are you in one of the following 19 states? If so, we need your help. AK, CO, CT, GA, IL, KS, KY, LA, MD, MA, MN, NC, SC, TN, UT, WA, WI, WY, and VT.
Help us contact 19 senators about federal Lyme bill
Many of you have already used our Voter Voice system to contact your senators about co-sponsoring Senate Bill 1503, the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015, introduced by Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT).
Right now, we need people from the following 19 states to send a message. These states have a senator on the Health, Education, Labor and Pensions (HELP) Committee who has not yet signed on as a co-sponsor to the bill: Alaska, Colorado, Connecticut, Georgia, Illinois, Kansas, Kentucky, Louisiana, Maryland, Massachusetts, Minnesota, North Carolina, South Carolina, Tennessee, Utah, Washington, Wisconsin, Wyoming, and Vermont.
The HELP Committee already has three members who have signed on to co-sponsor the bill: Susan Collins (ME), Sheldon Whitehouse(RI), Robert Casey Jr(PA).
Here are the committee members who have not yet signed on:
REPUBLICANS
Lamar Alexander (TN) Michael B. Enzi (WY) Richard Burr (NC) Johnny Isakson (GA) Rand Paul (KY) Lisa Murkowski (AK) Mark Kirk (IL) Tim Scott (SC) Orrin Hatch (UT) Pat Roberts (KS) Bill Cassidy, M.D. (LA) DEMOCRATS
Patty Murray (WA) Barbara Mikulski (MD) Bernie Sanders (VT) Al Franken (MN) Michael F. Bennet (CO) Tammy Baldwin (WI) Christopher S. Murphy (CT) Elizabeth Warren (MA)
If you use our Voter Voice system, it will send a message to both of your senators, whether they are on the committee or not. That’s okay! The message asks them to co-sponsor the legislation.
If you are from a different state, you can still send a message to your senators. (Won’t hurt.)
Voter Voice is an easy way to communicate with your senators. When you enter your name and address, it automatically identifies your legislators and allows you to send an email to them.
The Voter Voice system gives you a pre-written message to your senators. Feel free to add a few lines of your own story (like, my three children have Lyme disease; or, I have been disabled by Lyme for 10 years; or other brief description of why this bill is important to you.)
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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