Lambert-Eaton News Forums Forums General Questions and Topics Do you stay on top of legislation that can affect LEMS and rare disease research?

  • Do you stay on top of legislation that can affect LEMS and rare disease research?

    Posted by Price Wooldridge on June 22, 2023 at 7:00 am

    The recent debt ceiling budget negotiations just recently concluded, were all over the news. Having an ultra-rare disorder like LEMS, we are all too aware of how funding for ongoing research is critical to new and better treatments. It’s important to stay in tune with those laws which may impact Federal research dollars available.

    The Debt Ceiling Deal has frozen “other health spending” which includes Federal Research dollars. Here’s a brief statement by Peter L. Saltonstall, President and CEO of the National Organization of Rare Disorders (NORD), illuminating what we all need to be aware of and advocate for. His statement is HERE.

    And HERE is the recent Lambert-Eaton News article on this topic.

    If you have the opportunity to make your opinion known to your national or state congressional representatives, this will give you the background to do so. Do you stay on top of legislation that can affect LEMS and rare disease research?

    Ginny Boynton replied 11 months ago 1 Member · 1 Reply
  • 1 Reply
  • Ginny Boynton

    Member
    June 23, 2023 at 3:09 pm

    The medicare provisions in the Inflation Reduction Act are critical. With them, in 2025, Medicare patients will only have to pay $2000 out of pocket for the entire year, Insulin is capped at $35/month and medicare will be able to begin negotiating the price of pharmaceuticals. Unfortunately, Firdapse won’t be on the list… at least not any time soon, but last year 90 mg of Firdapse cost $680,000 and this year it costs $750,000. That price change alone shows how important negotiation is. Many of those who are concerned with cutback in rare drug research are crying Chicken Little.

    The freezing of research into rare disease treatment by the Debt Ceiling Bill is problematic, but because the Republicans wouldn’t pass a clean debt ceiling bill there was no choice but to go forward with it the way it was decided. Unfortunately the Republicans are now trying to renege on the agreement which was made and take funding levels back even further.

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