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The 21st Century Cures Act passed in the House yesterday with the Lyme language intact! The Senate version of the federal bill, which has more provisions that protect the interest of Lyme patients has been introduced by Sen. Richard Blumenthal (D-CT). If both bills get passed then there will be a conference to sort out the final language.
LymeDisease.org sets up voter voice for federal bill.
Action Alert from the LDA (below): Contact your US Senators today and request their support for 21st Century Cures with the inclusion of Section 406, the Lyme language.
[pr] HR 6 w/ Lyme Language Passes House [LDA] Fri Jul 10, 2015 2:00 pm (PDT) .
Posted by: "Rick Laferriere" ri_lymeinfo *HR 6 w/ Lyme Language Passes House* Lyme Disease Association, Inc. News & Updates
The 21st Century Cures Act, HR 6, passed the US House of Representatives with a vote of 344-77 today, July 10, 2015. The text of HR 789 (Gibson), Tick-Borne Disease Research Accountability and Transparency Act (2014), was included as Section 4061 of the Act. See HR 6 Text and Report https://www.congress.gov/bill/114th-congress/house-bill/6/text
In the current 2015 Congress, the House Energy & Commerce Committee incorporated virtually intact that Lyme bill's language into its 21st Century Cures, an Act which addresses many health issues, but originally did not include Lyme. Congressman Chris Gibson supported inclusion of the Lyme bill language into the Act. The LDA and a few other Lyme organizations provided input into 21st Century Cures Act in areas which could impact Lyme such as testing. http://www.lymediseaseassociation.org/index.php/legislative-session-2015-2016/1412-lda-provides-input-into-us-house-21st-century-cures-initiative
The Lyme Disease Association (LDA) had extensive input into the development of the passed Lyme language and was integral to its 2014 passage after LDA amassed a nationwide effort to unite Lyme groups behind the Lyme bill (HR-789 Gibson, 2014), which saw House passage in September 2014. The Senate did not introduce such a Lyme bill, so the bill died with that 2014 Congress http://www.lymediseaseassociation.org/index.php/archive/legislative-session-2013-2014/1263-lyme-victory-in-the-us-house-of-representatives, but its language lives on in the 21st Century Cures.
21st Century Cures now goes before the US Senate. Contact your US Senators today and request their support for 21st Century Cures with the inclusion of Section 406, the Lyme language.
The US House of Representatives today overwhelmingly passed the 21st Century Cures Act (HR 6), bipartisan legislation that will boost funding for biomedical research at the National Institutes of Health (NIH), and make reforms designed to bring new therapies and treatments for rare diseases to market sooner.
New Jersey Congressman Chris Smith, who has carried Lyme disease legislation in the past, praised the new bill for including provisions geared towards helping people with tick-borne illnesses. . . .
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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A legislative proposal that would require the federal government to establish a more aggressive plan to battle tick-borne illnesses like Lyme disease passed the House of Representatives on Friday as part of a $9 billion package to accelerate medical developments, including investigations into chronic and rare diseases.
The measure now goes to the Senate.
Rep. Chris Gibson authored a portion of the bill, the 21st Century Cures Act, that would prioritize federal research on Lyme and other tick-borne illnesses, which have been on the rise in New York, with more than 7,500 cases statewide in 2013.
"This is now a public health scourge," said Gibson, who spoke about the bill at the Albany International Airport. "The Capital Region is ground zero for Lyme disease."
Treatment of Lyme disease has been increasingly controversial as some patients claim to have persistent symptoms that don't respond to established remedies. Patient activists believe the bacteria that causes Lyme disease is stealthy, and can persist in the body after standard antibiotic treatments. Some doctors, including the nation's largest infectious disease medical group, do not acknowledge chronic Lyme.
The bill would require federal health officials to consider cases of chronic or persistent Lyme disease in their plans. Those plans would be hammered out with advice from a working group of both government and non-government participants, including patients and families who have battled tick-borne disease, with diverse scientific viewpoints. . . .
The proposal does not explicitly require that the working group to include representatives who believe in the existence of chronic Lyme, but Gibson said he would be involved in making appointments to that group. . . .
In his speech Representative Gibson, thanks many of our hard-working NYS advocates and physicians for their help in getting passage of the bill: including David Roth (Global Lyme Alliance), Jill and Ira Auerbach (Hudson Valley LDA), Chris Fisk, and Holly Ahern (Lyme Action Network), and Dr. H.. Also thanked are Pat Smith (LDA), Representative Chris Smith (R-NJ), and Representative Joe Courtney (D-CT), and Frank Pallone (D-NJ).
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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VIDEO: Federal bill would prioritize Lyme research
U.S. Rep. Chris Gibson speaks about recent passage of the 21st Century Cures Act in the House of Representatives and what it means to victims of Lyme disease.
Legislation is headed to the U.S. Senate that would prioritize federal research on Lyme disease and other related illnesses and give a greater voice to patients suffering, lawmakers and advocates say.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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POUGHKEEPSIE, N.Y. -- No one knows the pain Lyme disease can cause like Jill Auerbach. She said she suffered from Lyme disease for 10 years before she was finally diagnosed in the 1990s.
“I had ringing in my ears. I had a headache that was massive and would not go away. I had difficulty speaking.”
Auerbach, who said she’s now about 90 percent cured, is not alone. Lyme disease is a problem that Dutchess County is actively fighting.
“For generations, Lyme disease has been plaguing Dutchess County residents,” said Dutchess County Executive Marc Molinaro.
“In the state, Dutchess County we’re ranked 7th or 8th in the list,” said Andrew Rotans, senior public health adviser.
That list is still alarming to lawmakers in Washington. Reps. Chris Gibson and Sean Patrick Maloney joined with health experts Monday in Poughkeepsie to push their legislation to stop the disease. Their bill, which has already passed The House of Representatives, would require the secretary of Health and Human Services to work with experts to present a plan for prevention to Congress.
“That's going to be the next step. Making sure that we populate the working groups that people are ready to truly bring forth diverse scientific view points and solutions," said Gibson, R-19th District. . . .
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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POUGHKEEPSIE – Reps. Chris Gibson and Sean Patrick Maloney on Monday hailed the recent House passage of a bill they say will strengthen the fight against Lyme disease and similar medical scourges.
The 21st Century Cures Act recently passed the House 344-77 and now goes on to the Senate, where action could come this fall.
The act includes the key provisions of the Tick-borne Disease Research Transparency and Accountability Act, which Gibson authored and of which Maloney was an original sponsor. It passed the House but never got action in the Senate.
Among other provisions, the act will encourage increased collaboration among researchers, incorporate patient perspective into the drug development and regulatory review process, and encourage job creation in the pharmaceutical industry. . . .
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
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Karla - do you have any suggested language that we could use in support of the bill?
thanks so much for making us aware of this!
Posts: 1737 | From Virginia | Registered: Aug 2011
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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.
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/
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