Federal Bill Passes Congress for Research Funding For Lyme Disease

Federal Bill Passes Congress for Research Funding For Lyme Disease

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 on May 21, 2015.

Another great report from Poughkeepsie Journal:

This bill that would prioritize federal research on Lyme disease and related illnesses — and give patients a voice in the process — may reach President Obama’s desk by the end of the year.

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.

The group would be charged with ensuring coordination among federal agencies to maximize research priorities.

It would also require the secretary of health and human services to consult with the group and create a strategic plan within three years.

That plan would need to include a proposal for improving outcomes of Lyme diseaseand other tick-borne diseases, including progress related to chronic or persistent symptoms, infections and co-infections.

It would also have to include benchmarks to measure progress toward those goals.

Dr. Kenneth Liegner, a Pawling-based internist who appeared at a forum with Gibson in Pawling earlier this month, said the bill would level the playing field for researchers, clinicians and patients who have battled chronic Lyme disease in the face of federal denials of its existence.

“I think it is the best hope I have seen in a long time,” Liegner said, “in really redirecting priorities in order to address the problems, stop denying them and solve them — because they are solvable.”

Co-sponsor Sean Patrick Maloney, D-Cold Spring, said “it’s past time to get serious and make the investments needed to join them in their fight.”

Gibson said he expects the bill to make it through Congress and be signed by President Obama by the end of the year.

“This is a great piece of legislation that will make a positive difference in the lives of Americans, including those long suffering from chronic Lyme,” he said.

John Ferro: 845-437-4816; jferro@poughkeepsiejournal.com

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5 Responses to Federal Bill Passes Congress for Research Funding For Lyme Disease

  1. windy mauga says:

    I will be honored to contribute my personnel experience with this devastating disease anytime ,anywhere. A healthy population is a functioning, contributing asset to our society. We Must Stop the Madness associated with Lyme and co infections. It manifests itself in various forms that Rob ill people of their dignity by medical professionals who are not abreast of current research studies.

  2. HHH says:

    I am in the late, late stages of Lyme. Conventional Medicine has completely failed me and all alternatives to date have not been enough to pull me out of this dive. I know I am not alone. I doubt any of this legislation will come in time. Please it is not enough to talk about therapies that include Drugs. Drugs will never cure Lyme or Cancer or Alzheimers or any other chronic illness. We all know this, those of us who suffer and those who administer. Most LLMD’s are hurting patients with their antibiotics, this is the wrong treatment. At best, it is not sustainable and at worst, dangerous, lethal. Aside from my voice, I cannot contribute to society anymore and as the numbers rise, society will collapse without intelligent intervention. This is an epidemic of untold proportions. I totally agree with the first responder, Stop the madness, this is political and criminal on all levels!!!

    • Jenna Seaver says:

      Dear HHH –

      We can agree to disagree…syphilis would not be cured without antibiotics so why would Borrelia? Statistics don’t lie and the largest percentage of people who recover from chronic Lyme disease do so from some form or combination of antibiotics although great strides are being made by other therapies – none are uniformly reliable from the research I have done. If you have research that shows other facts please share – we all want the most healthy treatment but I think I can speak for most people who have had their lives destroyed by Lyme – I would rather suffer from side effects resulting from long and strong doses of antibiotics (if taken responsibly with equally strong probiotics daily and nystatin to keep candida under control than abx does not have to be life threatening… chronic Lyme on the other hand destroys your life and causes daily and intensely painful suffering (physical, mental, emotional, social, financial and spiritual) and if you are lucky you die from it instead of suffering bedridden daily for decades!)

      The madness is a medical construct that keeps an accurate diagnostic tool hidden from the world and plays games over semantics ignoring the doctor’s vow of “Do No Harm” while jockeying for vaccine deals, diagnosis deals and treatment deals with Big Pharma…ignoring the facts of chronic Lyme they leave hundreds of thousands of people with out any support. That is criminal.

      Jenna

  3. Nel den Ouden says:

    The federal bill is also important to all chronic Lyme patients in Europe.
    As a Dutch chronic Lyme patient and activist And former boardmember of the Dutch Lyme Association I fully supprt this bill!
    With best regards,
    Nel den Ouden.

    • Jenna Seaver says:

      Have you watched the Norvect conferences? 2014 had many US Lyme experts but 2015 had many European experts…absolutely fascinating and so affordable!

      Thanks for commenting!

      Jenna

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