• Do you have a PAL?

    Posted by deann-r on December 8, 2023 at 9:12 am

    My PAL (Patient Access Liaison maybe is what it stands for,) left me a voicemail the other day. When I started with Evrysdi the pharmaceutical company provided the opportunity to work with this person as a contact to help streamline the process and answer any questions. Spinraza has them too I believe but they use a different acronym. The message indicates the initial consent I gave is expiring.

    Since this person has been of no benefit to me, I’m considering not renewing my consent. On the one hand, they may be a helpful resource to have in my back pocket. On the other hand, sometimes having fewer cooks in the kitchen is a better approach.

    Do you have a PAL or treatment contact? Have you found them to be helpful?

    deann-r replied 2 months, 2 weeks ago 3 Members · 3 Replies
  • 3 Replies
  • alyssa-silva

    December 10, 2023 at 9:37 pm

    I’m on Spinraza and have a FAM (family access manager, I think) through Biogen. I’ve never needed to use their services either. If I run into any issues or concerns, I usually reach out to my neurologist who’s in charge of the SMA clinic and treatments at the hospital I go to. If you run into problems, who is usually your point of contact?

  • mike-huddleston

    December 12, 2023 at 2:39 pm

    Like Alyssa, I have a FAM for Spinraza. Not sure that it’s critical to have a person in this role, but I find she is a good resource for initial questions. Better to have and not need them, than to find out you don’t have one and no initial point of contact. I suppose I do have another question: what is the consent for? In other words, what happens if you don’t sign it?

    • deann-r

      December 13, 2023 at 9:11 am

      I guess the consent allows them to talk to the clinic and pharmacy if there are insurance or shipping issues. Sounds like without the specific consent they can still answer my general questions. Since I don’t feel motivated to do the consent I might just leave it at that.

Log in to reply.