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US House bill requires research on Lyme disease and tick borne illness

Discussion in 'Lyme Disease and Co-Infections' started by catly, Jul 30, 2014.

  1. catly

    catly Senior Member

    outside of NYC
    The US House committee on 21st centurycures passed a bill today that requires HHS to conduct or support epidemologic, basic, translational and other other clinical research regarding Lyme and other tick borne disease.

    It also requires establishing a permanent working group called the Intra-agency Lyme and tick borne disease working group and specifies who should be part of the committee, which is to includes physician experts, researches, patients and others.

    OK, kind of sounds like CFSAC for Lyme and tick borne disease. But maybe it will be more effective than CFSAC

    Anyway, I posted on this here today.

    The direct link to the bill is here.
    Ren, xchocoholic and Valentijn like this.
  2. Ren

    Ren Primum Non Nocere

    Potemkin Village
    Saw the following today (emphasis added):

    "...The bill sets up a “working group” to meet with the Department of Health and Human Services in developing a strategic plan “for improving outcomes of Lyme disease and other tick-borne diseases, including progress related to chronic or persistent symptoms and chronic or persistent infection and co-infections.”

    The make-up of that working group became a sticking point for the committee. At one point, Gibson’s bill was amended to exclude patient representatives or Lyme-treating physicians. The Lyme community viewed the change as dangerous for Lyme patients.

    Pat Smith of the Lyme Disease Association led a nationwide effort to restore patient-friendly language to the bill...

    http://lymedisease.org/news/lyme_di...s&utm_campaign=Aug Lyme news&utm_medium=email

    Anyone know who was behind the attempted exclusion of patient representatives and Lyme-treating physicians?

    Also, will the Lyme working group be within NIAID (National Institute of Allergy and Infectious Disease)?

    CDC Webinar 7.JPG
    Valentijn and catly like this.
  3. catly

    catly Senior Member

    outside of NYC
    @Ren, I don't know the answers to your questions but this is a good example of patients/advocates/experts being heard and a having an impact. What it does to furture the science reqarding tick borne illness, one can only hope.
    Ren likes this.

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