1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

US House of Representatives Path to 21st Century Cures

Discussion in 'Advocacy Projects' started by catly, Jul 9, 2014.

  1. catly

    catly Senior Member

    outside of NYC
    Does anyone know if anyone has tried to tap into this iniative on behalf of the ME/CFS community?


    This is the link to their white paper


    From the wesite:

    The committee is seeking input on this bold new initative from a wide variety of interested stakeholders.

    Engage on social media by liking us on Facebook, Following us on Twitter, and using the hashtag #Path2Cures.

    Email the committee using the email address cures@mail.house.gov

    - See more at: http://energycommerce.house.gov/cures#sthash.SOlyCSr4.dpuf
    alex3619 and Little Bluestem like this.
  2. catly

    catly Senior Member

    outside of NYC
    I'm not sure if this is the right place for this thread or not. Please move it if it is not.

    On 7/11/14, the 21st Century Cures House of Representatives Committee heard testimony from 4 groups regarding the patient perspective in regards to advancing health in the US. The link to the testimony can be found here: http://energycommerce.house.gov/hearing/21st-century-cures-incorporating-patient-perspective

    Janet Woodcock, M.D. Director Center for Drug Evaluation and Research, Food and Drug Administration - testified on behalf of the FDA and mentioned the initiative with ME/CFS as follows (my bolding):

    ".....FDA Efforts on Patient Engagement

    In accordance with our commitments in the Prescription Drug User Fee Act of 2012 (PDUFA
    V), FDA has initiated the Patient-Focused Drug Development (PFDD) program. The objective
    of this five-year effort is to more systematically obtain the patient’s perspective on a disease and
    its impact on patients’ daily lives, the types of treatment benefit that matter most to patients, and
    the adequacy of available therapies for the disease. As part of this commitment, FDA is holding
    at least 20 public meetings over the course of PDUFA V; each of which will focus on a specific
    disease area. We have already held patient meetings on several major diseases.

    After conducting a public process to nominate disease areas for Fiscal Years 2013-2015, FDA
    held the first PFDD meeting on April 25, 2013. This meeting focused on chronic fatigue
    syndrome (CFS) and myalgic encephalomyelitis (ME), sometimes called CFS-ME, a debilitating
    disease for which there are currently no FDA-approved treatments.

    Here, we heard directly from patients, patient advocates, and caretakers about the symptoms that
    matter most to them, the impact the disease has on patients’ daily lives, and the patient
    experience with currently available treatments. FDA staff, including members of FDA’s
    Division of Pulmonary, Allergy, and Rheumatology Products, listened carefully to the personal
    accounts of this devastating condition.

    After the meeting, we released a report titled The Voice of the Patient: Chronic Fatigue
    Syndrome and Myalgic Encephalomyeliti, a detailed summary of the meeting. In this report we
    documented, in the patients’ own words, what disease impacts and treatment approaches
    mattered most to them. This summary included patient testimony at the meeting, perspectives
    shared in 230 docket comments, as well as unique views provided those joining the meeting via
    webcast. Moreover, on March 11, 2014, FDA also released draft guidance (found at
    CM388568.pdf) for industry entitled “Chronic Fatigue Syndrome/Myalgic Encephalomyelitis:

    Developing Drug Products for Treatment.” The purpose of the guidance is to assist sponsors in
    developing drug products for the treatment of CFS-ME.

    The PFDD reports, such as the one developed after the CFS-ME meeting, will serve an important
    function in communicating to both FDA review staff and the regulated industry what
    improvements patients would most like to see in their daily lives...."

    Well, at least we got mentioned!
    SpecialK82, PennyIA, barbc56 and 2 others like this.
  3. catly

    catly Senior Member

    outside of NYC
    Committee Members Take 21st Century Cures From Coast to Coast.
    you can read about this latest update here.

    And for anyone in New Jersey's seventh district, Congressman Leonard Lance is asking for input from his constituants.

    "Congressman Leonard Lance today, July 25, announced his office is welcoming constituent testimony and comment on a major initiative launched by the House Energy and Commerce Committee. The 21st Century Cures Initiative seeks to accelerate the pace of cures by exploring advancements in technology, the role of federal programming, regulation and research and how best to contribute to medical breakthroughs.

    “Remarkable advancements in technology and innovation are transforming health care in the 21st century and presenting an excellent opportunity to advance new cures and treatments. Many young people will see cures in their lifetime for some of today’s greatest public health challenges. To help get there, the 21st Century Cures Initiative is – for the first time – taking a comprehensive look at the full arc of accelerating cures. To do this right we need first-hand experience and testimony from people who fight this battle every day,” said Lance, a member of the Energy and Commerce Committee. “We need the ideas and contributions from patients, health care professionals, innovators and those advocating for a loved one.”

    Lance is asking constituents from New Jersey’s Seventh Congressional District to email in their ideas, suggestions or questions on the initiative to NJ07cures@mail.house.gov. These ideas will then be researched and incorporated into a report Lance will present to the Committee.

    “New Jersey has always been on the forefront of scientific advancement and medical innovation. If we want to save lives, tackle these major challenges together and keep New Jersey and the United States as an innovation capital then we need all the good ideas we can get,” concluded Lance. "

    Read the article online here.
    alex3619 likes this.
  4. catly

    catly Senior Member

    outside of NYC
    Today's update.

    The 21st committee cures committee approved 7 health related bills today, one of which deals with tick borne illnesses, which I know is an issue for many on this forum.

    From the press release:

    "Health Subcommittee Chairman Joe Pitts (R-PA) discusses H.R. 4701, the Tick-Borne Disease Research Accountability and Transparency Act, introduced by Rep. Chris Gibson (R-NY).

    The bill addresses the growing threat of Lyme Disease and establishes a working group to review federal activities at the Department of Health and Human Services related to Lyme and tick-borne diseases.

    H.R. 4701 was approved as amended, by a voice vote."

    The bill can be found here.

    SpecialK82 and Valentijn like this.
  5. catly

    catly Senior Member

    outside of NYC
    Anyone live in Hillsbourough county near Lutz Florida?

    Representative Gus Bilirakis will be hosting a roundtable open to the public to get input for the 21st century cures house committee:

    "The process includes input from the public at roundtable discussions beginning at 1:30 p.m. Aug. 19 and Aug. 22 at the Bethany Center in Lutz."
    You don’t have to live in Bilirakis’ district to participate.
    “It will be an open discussion,” he said. “We want to find out people’s concerns and discover what barriers they are facing. I know there are a lot of frustrated people out there.”"

    More here.
    Article from the Tampa Tribune here
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Concord, NH
    Wow, a politician having a public event OPEN to anyone and everyone! How rare :mad: My rep has not had an event I could attend since she got into office, nearly her 2 year term! How disgusting:bang-head: So much for be accountable to the people of your state!

  7. catly

    catly Senior Member

    outside of NYC
    Interesting discussion on medical research in the US

    with 21st Century Cures leaders Fred Upton and Diana DeGette
    ggingues likes this.

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