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Urgent/ Vote Tomorrow!--Urge your rep to support Nat'l MS database

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  • Urgent/ Vote Tomorrow!--Urge your rep to support Nat'l MS database

    Everyone, The MS Society sent out an email tont to email your rep tont because the U.S. House of Representatives will have one last chance to pass on the 21st Century Cures Act TOMORROW - This the centralized database to is to document the prevalence of MS around the country, and help researchers find a cure. If you agree with the creation of a CDC data collection system on the incidence of MS and other neurological conditions JUST click MS Society link below and fill out form, the MS society will send it to your rep.
    Thanks! Suebee

    Please read my 2nd post below, adding information I later learned that the MS Society choose to support this Bill despite that fact that Big Pharm lobbyists buried text into it to weaken the FDA's review of new drugs and many consumer advocates oppose the Bill!
    Fight! Find a Cure!
    Last edited by Suebee; 11-30-2016, 05:17 PM. Reason: I feel tricked by the MS Society's urgent request to support bill- edit is in red

  • #2
    Update- Some consumer advocates don't side with MS Society on This!

    HUMMMM.... I thought it was odd that the MS Society waited until the night before Congress was to vote on funding the CDC Neurological/MS Nat'l database but I trusted the MS society was ultimately protecting MSers interests. However, now, I question the organization's integrity altogether.
    Since I posted the link urging you all to contact your rep to sign the 21st Cent. Cures Act, I am following up with an article explaining why consumer advocates DONT support it. In essence, Big Pharm got their hands on it and weakened FDA review. I'm sorry to all of you that I blindly trusted the MS society and posted their request without further research. Uggg. Who is in our corner?

    Sens. Bernie Sanders and Elizabeth Warren have come out swinging against a controversial $6.3 billion bill that would dramatically overhaul the way new drugs are approved in the United States.

    The 21st Century Cures Act is a bipartisan effort that’s been in the works since April 2014. The idea behind the bill is that the Food and Drug Administration's current approval process is clunky and out of date, delaying potentially lifesaving drugs and devices from reaching the patients who need them. The bill aims to modernize the process, accelerate drug and device innovation by boosting funding for research, and get cures onto the market faster.

    An earlier version of the bill passed the House in July 2015, and it’s been going through revisions ever since, with Republicans expected to bring the latest draft to a vote in the House Wednesday.

    But Sanders and Warren are saying not so fast. They think the 21st Century Cures Act has been compromised by pharmaceutical companies (more than 1,400 lobbyists pushed for the bill), and they’re calling on fellow lawmakers to refuse to sign off on it.

    "This is a bad bill, which should not be passed in its current form," Sanders said in a statement. "It's time for Congress to stand up to the world's biggest pharmaceutical companies, not give them more handouts."

    In a Senate speech on Monday, Warren vowed to "fight it because I know the difference between compromise and extortion."

    They’re right to be concerned. Researchers who study the FDA have long pointed out that tucked away in the 996-page bill are provisions that will weaken the regulator's authority and, potentially, compromise patient safety.

    Critics have long worried that the bill weakens the standard of evidence at the FDA

    excerpt from


    • #3
      The Good & Bad of 21st C. Act Reviewed by Dr Stone

      Dr. Judy Stone summarizes the 21st C. Act this way in Forbes:
      This bill, like many, offers both promises and perils. Any bill so heartily supported by pharmaceutical companies, device makers, patient advocates and the House raises a few warning flags to me .....[the Good parts]....[it will] help collect data from a broad range of patients in a “structured way,” including details about the burden of their disease and what matters to [patients]..... Perhaps most immediately vital will be the infusion of money into the NIH and clinical research. [The Bad parts].... "increasing the use of surrogate markers to approve drugs. Monitoring biochemical markers as a stand-in for disease progression has been useful for hepatitis and HIV treatment, but has been disastrous in other areas, like statins, diabetes, oncology and hormone replacement therapy." ... none of 30 new [diabetic] drugs that came on the market between 2004-13, based on surrogate markers, showed any benefit in terms of reducing deaths or complications of diabetes—in fact, some (e.g., Avandia, or Rosiglitazone) actually increased the rate of heart attacks.

      Similarly, 74% of new cancer drugs over the past decade were approved based on markers, with no proof that they extended life. Nor does the FDA require proof that the drugs improve quality of life, more important than only survival days.....As Dr. Rita Redberg, a cardiologist from the University of California San Francisco (UCSF) Medical Center, notes, “anecdotal evidence, rather than the scientific studies, could be used to approve drugs and devices.” She added, “The emphasis has been on getting drugs and devices on the market quickly, not on making sure that they are safe.”....[The young with rare diseases] do not have the luxury of waiting a decade or more for a new drug to be approved. At the same time, it would cause more heartache to many in the future as well, if we seriously cut patient protections in our drugs and devices, by allowing too-limited trials and reviews. ... It is shameful that wealthy industry lobbyists are holding the important advances for ill patients—especially children—hostage for greater FDA concessions[emphasis added].

      excerpt from

      Yes, it is shameful!