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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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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
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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From: [email protected] Date: July 12, 2015 10:07:16 PM EDT Subject: Chris Gibson: 21st Century Cures Act Passed by HR - Includes Lyme & TBD Legislat
To All, Congressman Chris Gibson on the 21st Century Cures Act Passed by HR (read below) - Includes Lyme & TBD Legislatation he authored. We need balanced research including tick research, we need treatments, we need a test, will this be the year? We all owe him a great deal of thanks! Jill
I hope you had a wonderful 4th of July. It was a great honor for me to participate in the parades and celebrations in Saugerties, Tannersville, Cobleskill, Windham, and Fort Plain. As always, I was impressed by the great turnout and the many heartfelt expressions of patriotism and community spirit at these events. Thank you!
I am writing to you today to share exciting news. By a vote of 344-77 today, the House of Representatives adopted the 21st Century Cures Act (HR 6), landmark legislation that will hasten the development of cures for a host of diseases. This bipartisan bill includes the legislation I authored to combat Lyme disease and tick-borne illnesses, prioritizing federal research, setting benchmarks for progress on treatment and cures, acknowledging chronic Lyme, and giving patients and physicians who treat tick-borne illnesses a voice in the process.
As you know all too well, ticks are an increasingly dangerous presence in our communities, causing a litany of health problems that often go untreated or undetected. This situation is exacerbated by the dated treatment guidelines used by the Centers for Disease Control and a lack of coordinated research by federal agencies, both of which have kept patients waiting for treatments and left them in the lurch financially when insurers refuse to pay for healthcare costs.
The 21st Century Cures Act removes barriers to increased research collaboration, including those who study tick-borne illnesses. Our provisions will bring relief to a long-suffering population, especially our chronic Lyme sufferers.
The 21st Century Cures Act will help save and improve the lives of countless people afflicted with medical conditions that lack effective treatments, establishing an innovation fund to strengthen biomedical research, streamlining the Food and Drug Administration approval process to reduce the often interminable wait for new therapies, providing guidance on the use of personalized medicine, and incorporating the patient perspective into the drug development and regulatory review process.
Under HR 6, the National Institutes of Health will receive an additional $1.75 billion per year for the next five years and the FDA will receive an additional $550 million. Investing in innovation makes sense for our economy, supporting jobs in the sciences and saving money by finding cures for chronic illnesses that strain the finances of families and cost taxpayers billions in Medicare and Medicaid costs.
Importantly, the Energy and Commerce Committee identified mandatory savings elsewhere in the federal budget to pay for the programming instituted by HR 6. What is more, the non-partisan Congressional Budget Office estimates this legislation will reduce the deficit by upwards of $524 million through 2025.
We know of 10,000 diseases and medical conditions, but only 500 of those can be treated effectively. Too many Americans are kept waiting for new medicines. We simply must do a better job. The 21st Century Cures Act not only speeds the delivery of life-saving treatments, it incentivizes researchers to make new discoveries.
Senate leaders have indicated their support for the 21st Century Cures Act, and I am optimistic it will be signed into law soon. This bill is a great example of constituent-driven legislation. I deeply appreciate the guidance and advocacy of the many patients and physicians who helped advance our Lyme initiatives. We are listening, and we will continue our push to safeguard public health across Upstate New York.
Please join me soon for a conversation on this or any other issue. My schedule this weekend includes visits to the Otsego County Fireman’s Convention in Schenevus, the Wurtsboro Street Fair, and the Walton Fire Department 150th anniversary celebration. I also encourage you to contact me to schedule a meeting or let me know how we can be helpful. My staff and I are here to serve you, so please stay in touch. Sincerely,
Chris Gibson Member of Congress
-------------------- 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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