AveXis publishes new information to global Managed Access Program (MAP)

The global Managed Access Program (MAP) for Zolgensma® (onasemnogene abeparvovec) was already heavily debated. Some countries welcomed them, other countries were quite outraged by the selection process.

In the meantime Zolgensma is approved in Europe by the EMA. The respective countries have to decide whether approval in their country.

Okay, where people work, mistakes are made. AveXis says apologize and followed the feedback from the SMA community.

Read more below!

Publisert av

Liz

Until those day, was my kiss of death been stronger than those of the devil. I like to ride through hellfire with him ,when I come out victorious afterwards. I'm strong and proud rheumatoid arthritis warrior Följ mig, tack! Liz - Fotoblogg Spelblogg Instagram

Ein tanke om “AveXis publishes new information to global Managed Access Program (MAP)”

  1. AveXis has now released a community update.

    The program launch was met with sincere appreciation in some regions of the world, and with criticism in others. We take the concerns of the community seriously, and in retrospect recognize that we had prioritized a sense of urgency over inclusiveness in rolling out the program – and for that, we sincerely apologize. On hearing the feedback, we committed to collecting more input, and engaged in extensive and deep discussions with additional SMA community members.

    Based on what we’ve heard through dozens of conversations with advocates, physicians and patient families, we are adjusting some elements of the global MAP. Starting on July 6, 2020, we are now requiring physicians to attest that their patient does not have access to, or is not medically eligible for, available treatment alternatives. June 22, 2020 is the last day that patient registration forms under the existing treatment plan will be accepted. There will be a 2-week transition period where patient registration forms will not be accepted to allow time for us to process the existing registrations, focus on operational readiness and prepare for accepting the new registration forms.

    Our discussion thread for members only

    https://liz-sma-blog.eu/2019/10/04/zolgensma-olika-studier-och-rapporter/

Innlegget er stengt for innspel.