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Good News! H.R. 789, the Tick-Borne Disease Research Accountability and Transparency Act, sponsored by Representative Chris Gibson’s (R Kinderhook) is set to be included in a must-pass legislative package. The House Energy & Commerce Committee marked up the bipartisian “21st Century Cures” package on Tuesday, and the bill was included in Chairman Upton's Manager's Amendment.
The “21st Century Cures” package is scheduled to for a vote in the House Energy & Commerce Committee on Thursday.
We have been asked to please reach out to any Lyme/tick-borne disease advocates that we work with to share the good news and encouraging them to ask their Representatives to support the bill, as it will help the process move more smoothly.
After more than a year of preparation, U.S. Rep. Diana DeGette has introduced her “21st Century Cures” initiative — a wide-ranging effort to streamline medical testing and development procedures that aims to allow doctors and researchers to attack diseases in more efficient and robust ways. The bipartisan bill, which the Denver Democrat is sponsoring with Michigan Republican U.S. Rep. Fred Upton, is expected to be fast-tracked after Tuesday’s introduction and to be heard on the House floor sometime this summer, DeGette said in an interview.
She says she has wide support for the bill, ranging from research universities to private pharmaceutical investors to patient-advocacy groups, and there is no organized opposition to the measure, she said. But there is concern that its price tag — $10 billion over five years for increased funding at the National Institutes of Health — could scare off some potential backers, she acknowledged.
“It is a substantial bill,” DeGette said after the House Energy and Commerce Committee, which Upton chairs, held eight hearings and more than 25 roundtables across the country to get input on the proposal. “Our little tag line is ‘A path to discovery, development and delivery.’ So, what we are hoping is this would streamline the drug and device process.”
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More Good News! H.R. 789, the Tick-Borne Disease Research Accountability and Transparency Act, sponsored by Representative Chris Gibson’s (R Kinderhook) was included in the bipartisan “21st Century Cures” Act which passed unanimously (51-0) in The House Energy & Commerce Committee today. The “21st Century Cures”Act will come before the full House for a vote later this summer. A companion bill to H.R. 789 is being introduced into the Senate.
WASHINGTON, DC – The House Energy and Commerce Committee today unanimously approved the nonpartisan 21st Century Cures Act 51-0. The nonpartisan legislation will help to modernize and personalize health care, encourage greater innovation, support research, and streamline the system to deliver better, faster cures to more patients. The bill has seen continued support throughout the process. H.R. 6, the 21st Century Cures Act, was authored by full committee Chairman Fred Upton (R-MI), Oversight and Investigations Subcommittee Ranking Member DeGette, full committee Ranking Member Frank Pallone, Jr. (D-NJ), Health Subcommittee Chairman Joe Pitts (R-PA), and Health Subcommittee Ranking Member Gene Green (D-TX).
"This historic day marks a big bipartisan step forward on our path to cures,” said Upton. “We have all said too many early good-byes to people we love and treasure. Every single person has a common goal: we want more time with those we love. In this, the greatest country in the world, Americans deserve a system second to none. We can and must do better. The time for 21st Century Cures is now.”
"In the last century, American medicine leapt from medicine shows to the mapping of the human genome,” said DeGette.”With the 21st Century Cures Act, we seek to support the biomedical community in making a similar leap forward in this next century. With billions in support for our premier research and development institutions and comprehensive reform of our systems, 21st Century Cures will make a real difference in the lives of patients and their families."
“Today’s vote is an important next step for this committee as we work to get 21st Century Cures enacted into law by the end of the year,” said Pitts. “This bill is improved since the Subcommittee marked it up on May 14, and that demonstrates the collaborative nature of our effort. Landmark legislation like 21st Century Cures illustrates that Congress can and should strive for ambitious goals. I want to thank my colleagues on both sides of the aisle for their hard work to modernize our discovery, development and delivery system, which will give hope to millions of Americans for an accelerated path to cures.”
“Our committee has had the unique opportunity to help usher our health care system into the 21st century, and I am glad that we have come together to begin to do so in a bipartisan way with this bill,” said Pallone. “The 21st Century Cures Act will ensure that innovative treatments are getting to those who need them most, giving real hope to patients and their families. Critical funding for our nation’s top research institutions will help to bolster biomedical research, advance cutting edge science, and further improve the process by which life-saving cures are discovered and approved. Today’s vote is an important step toward improving the health and lives of millions of Americans.”
Green added, “I’m proud of the final bill that was voted out of Committee, which will improve the innovation ecosystem for the development of life-saving medical breakthroughs, foster the development and the interoperability of health information technology, and better leverage critical resources to facilitate the discovery of new cures. After one year of deliberation, research, and stakeholder input we’re one step closer to delivering new cures and therapies, and hope to patients.”
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From: Z112 Gibson, Chris Date: Thu, May 21, 2015 at 9:58 AM Subject: Good news!
Team: Good news - HR789 the Tickborne Disease Research Accountability and Transparency Act was adopted into the larger, "21st Century Cures" Bill this morning in full committee mark-up. Our entire Bill was incorporated, word for word/identical to the version we passed in the US House last September.
This is a huge positive step forward as, from all accounts, the President intends to sign this Bill.
This Bill should get a vote on the House floor next month (June). The US Senate is expected to move the Bill in the coming months. Goal is to have the President's signature by the end of the year.
Very encouraging...here's an article where you can read more about the Bill we got our Bill in:
A bill that would prioritize federal research on Lyme disease and related illnesses — and give patients a voice in the process — cleared an important hurdle in Congress today.
The Tickborne Disease Research Accountability and Transparency Act was adopted into a larger medical research bill by the House Energy and Commerce Committee Thursday.
In a distinct display of bipartisan cooperation, the larger "21st Century Cures Act" was unanimously approved by the committee's members.
The larger bill includes the Lyme measure introduced last year by U.S. Rep. Chris Gibson, R-Kinderhook. That bill would create a group of federal agencies and "non-federal partners," including Lyme physicians and patient advocates. . . .
Congressmen Chris Gibson announced today the House Energy and Commerce Committee approved legislation he authored to combat Lyme disease and other tick-borne illnesses, agreeing to include those provisions in a broader bill to strengthen medical research and innovation.
The Tick-borne Disease Research Transparency and Accountability Act will be included in the 21st Century Cures Act, which expands federal programs designed to speed the development and approval of disease treatments and cures.
“This is outstanding news for Upstate New York and for the more than 300,000 Americans suffering from Lyme disease and a host of related illnesses like babesiosis, ehrlichiosis, and Rocky Mountain spotted fever,” said Congressman Gibson. “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 in use by the Centers for Disease Control and a lack of coordinated research by federal regulators, both of which have kept patients waiting for treatments and left them in the lurch financially when insurers refuse to pay for healthcare costs. Our bill will bring relief to a long-suffering population, especially our chronic Lyme sufferers.”
The provisions on tick-borne illnesses in the 21st Century Cures Act create an interagency working group consisting of federal agencies and non-federal partners, including experienced Lyme physicians and patient advocates with a broad spectrum of scientific viewpoints. The working group is tasked with ensuring coordination among federal agencies like the NIH and CDC to maximize research priorities.
The bill requires the Secretary of Health and Human Services to consult with the working group to submit a strategic plan to Congress within three years that includes benchmarks to measure progress. The plan must include a proposal for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms, infections, and co-infections.
Last year, Congressman Gibson’s Tick-borne Disease Research Transparency and Accountability Act became the first standalone bill addressing Lyme disease to pass the House of Representatives. However, the bipartisan bill was not brought to a vote in the Senate, necessitating its reintroduction this year and leading to its inclusion as part of 21st Century Cures.
In the current session of Congress, the bill’s original cosponsors include several Members of Congress from areas hit hard by Lyme disease: Lou Barletta (PA-11), Joe Courtney (CT-2), John Katko (NY-24), Sean Patrick Maloney (NY-18), Chris Smith (NJ-4), Elise Stefanik (NY-21), Peter Welch (VT), Rob Wittman (VA-1), and Lee Zeldin (NY-1).
“Tick-borne illnesses are especially prevalent in eastern Connecticut, affecting thousands of residents,” said Congressman Courtney. “Just last year, more than 1,700 people in our state were diagnosed with confirmed cases of Lyme disease—which is just one of the many diseases transmitted by ticks in the United States. Inclusion of tick-borne illnesses in the 21st Century CURES Act will help accelerate research into treatments and cures for these diseases. Along with my Republican colleague Chris Gibson, I am pleased we were able to break through Washington’s partisan gridlock to advance this long-overdue effort, moving us closer to a cure for those infected with tick-borne illnesses, which are chronic and debilitating for far too many Americans.”
“Folks in the Hudson Valley know the debilitating impacts of Lyme disease all too well; it’s past time to get serious and make the investments needed to join them in their fight,” said Congressman Maloney. “Including our legislation in the bipartisan 21st Century Cures Act is a huge step towards that goal, and I’m grateful for the chance to work in support of this important effort.”
“I want to thank our partners in the House, particularly my colleagues here in New York—John Katko, Elise Stefanik, Lee Zeldin and Sean Patrick Maloney—for their staunch support of moving this forward,” said Congressman Gibson. “I also want to thank those throughout the Lyme community, especially the many sufferers who have generously shared their time, talents, and resources to advance these commonsense, patient-oriented reforms. We are listening and taking action, and we will continue our fight to see that our provisions are signed into law and implemented by federal agencies without delay.”
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
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Terrific!!!
I contacted my rep. It took two seconds.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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lymeboy
Unregistered
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Holy cow...
This feels hopeful. Could this be the beginning of a new era for Lyme patients?
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I really think that we are at a tipping point where the magnitude and devastating effects of the Lyme epidemic are finally getting recognized by the general public and by both the federal and state legislatures. I would like to encourage everyone to send short thank you notes to the Representatives named by Gibson in his press release as having supported him by cosponsoring the bill and in moving the bill forward:
Lou Barletta (PA-11), Joe Courtney (CT-2), John Katko (NY-24), Sean Patrick Maloney (NY-18), Chris Smith (NJ-4), Elise Stefanik (NY-21), Peter Welch (VT), Rob Wittman (VA-1), and Lee Zeldin (NY-1).
Nurturing solid relationships with legislators and encouraging more legislators to join the bipartisan House Lyme Caucus are worthy goals that can only help us in the future. This is something that advocacy groups in each state can work towards.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Great report from News Channel 10 in Albany NY on the importance of the federal Lyme legislation and the harm to patients stemming from insurance denials for Lyme disease treatment.
KarlaL
House committee approves Lyme legislation to be added to federal program
By Lindsay Nielsen Published: May 21, 2015, 9:59 pm Updated: May 21, 2015, 11:16 pm
WASHINGTON (NEWS10) – Legislation aimed at speeding the development and approval of treatments and cures will now include legislation designed to combat tick-borne illnesses.
Congressman Chris Gibson announced on Thursday the House Energy and Commerce Committee approved legislation he authored to combat Lyme disease and other tick-borne illnesses. The Tick-borne Disease Research Transparency and Accountability Act will be included in the 21st Century Cures Act, which expands federal programs designed to speed the development and approval of disease treatments and cures.
But until it becomes law, many patients diagnosed with Tick-borne illnesses are paying out of pocket. A local patient fears she can’t wait much longer for help.. . . .
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Abxnomore
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Great news!!! Thanks for posting this.
There is a comment section attached to the video for those interested in thanking those who are involved in this Chris Gibson, etc. A good place to make our voices heard, as well.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Catgirl
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posted
GREAT NEWS! Karla, I don't know what we would do with out you! :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Abxnomore
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posted
Ditto!
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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