Lambert-Eaton News Forums Forums Treating LEMS Firdapse and Ruzurgi (Amifampridine) The Stress When Your Med Supply Is An Issue (Ruzurgi)

  • The Stress When Your Med Supply Is An Issue (Ruzurgi)

    Posted by price-wooldridge on September 27, 2021 at 7:00 am

    This past week, there is news of supply disruptions with the FDA approved medication for LEMS, Ruzurgi (amifampridine), from the pharmaceutical company that supplies it. Perhaps by the time this posts, the issues will be resolved and the stressor removed. If not, the thought of not having a supply of such an important LEMS medication could cause stress. The best recommendation I’ve heard is to contact or see you neurologist as soon as possible to consult on the best strategy for you to get your amifampridine. Being proactive quickly can help reduce stress. I’ve got my fingers crossed for all those on Ruzurgi that this situation is resolved quickly.
    I’ve had problems with my supply of Firdapse (amifampridine) too, so I know firsthand how stressful it can be. My problems have not involved the pharmaceutical company, but the Veterans Association (VA) Medical System, and their payment/approval process. On occasion there have been problems getting prompt monthly payment approval which has slowed delivery to almost the last day of my supply. Yes, this is very stressful! So just know I know the stress that can arise when an essential medication we depend on for our “good days”, is in question.
    Please let me know when your Ruzurgi supply issues are resolved to your satisfaction. And I wish you as little stress as possible.

    price-wooldridge replied 2 years, 6 months ago 3 Members · 4 Replies
  • 4 Replies
  • marym

    Member
    September 29, 2021 at 9:58 am

    That does make me nervous. My insurance company pays a huge amount each month for Firdapse. Im afraid that wont last long either.

    • price-wooldridge

      Member
      September 29, 2021 at 1:36 pm

      I’ve had no issues with Catalyst Pharmaceuticals and Firdapse, save the VA problems I’ve had. They do have a patient assistance program as well to help assist with payments if there are insurance issues. Be aware and take advantage if needed. When it took longer than expected to get set up with my VA paying, I was on their assistance program to cover costs for a time.

  • anngail-norris

    Member
    October 6, 2021 at 4:39 pm

    I have been using Ruzurgi for almost 2 years, and it has changed my life. Before Ruzurgi, I thought I was going to spend the rest of my life in a wheelchair. Now my mobility is almost normal.
    I just had a phone call from PantheRx, the pharmacy that is the sole supplier of Ruzurgi. There was a lawsuit from Catalyst Pharmaceutical (Firdapse) against Jacobus Pharmaceutical (Ruzurgi) regarding patent infringement and Jacobus lost. For now, Panther is only sending refills as patients run out of medication. I was supposed to get a shipment tomorrow and it is being pushed back a week. The pharmacist did not know if there will be further repercussions due to the lawsuit. This is very distressing. Medicare, and my supplemental insurance pay most of the monthly costs, and I have a grant from NORD that covers the copay. Firdapse is about twice as expensive as Ruzurgi, so if I have to change meds I don’t know about paying for it. To say this is stressful is an understatement!

    • price-wooldridge

      Member
      October 6, 2021 at 5:00 pm

      @anngailn Hi Anngail, Thanks for letting me know about your situation. Many others are in the same, and I am keeping close watch on how this proceeds. I was in touch with Catalyst Pharmaceuticals two days ago and they have not been given instructions yet on how to proceed. I will be getting an update from them Monday, before we do our Zoom social on Tuesday, for any updates and instructions they have received from the courts, FDA, or elsewhere on how to proceed.
      To hopefully put you a little bit at ease, I’ve been on Firdapse (from Catalyst) for quite some time. In study trials both it and Ruzurgi are equally effective. Catalyst Pharmaceuticals has a Patient Assistance Program, to help navigating insurance and cost. I’ve had to use them myself until I could get my VA benefits straightened out. Most of these rare disease medications are extremely expensive, and companies go out of their way to see patients have access. It’s to everyone’s interest. So, I would not stress regarding cost.
      So stick with me. As soon as I know what patients on Ruzurgi need to do, it will be posted here on the Forums.

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