Google blocks TreatSMA email system again

Unfortunately, only a few weeks after we managed to get our system unblocked, Google deprived us of email access again.

We challenged Google support to provide a reason, as they had a legally binding contract with us in place. After a lengthy email exchange and several phone calls in which Google staff put forward a number of absurd hypotheses (including accusing us of internet hacking), a Google representative finally admitted via email:

The system does not explain what exactly triggers this and no one has any way of finding out.

However, despite this admission Google still refused to restore our acccount.

As a result, TreatSMA currently has no access to the email history as well as to hundreds of files which, as we now see, it was naive to entrust to Google.

While we have switched to a backup email system, this has severely impaired the work of the TreatSMA Team and our advocacy efforts for SMA treatments in the UK. For now, thank you to bear with us while we try to recover or recreate the lost documents, messages and other content.

Latest Posts

  • Calling on all the community to ACT NOW to avoid losing treatments!

    Calling on all the community to ACT NOW to avoid losing treatments!

    Currently, there are two approved treatments for SMA: risdiplam and nusinersen. These treatments were initially approved temporarily under Managed Access Agreements while the NHS and NICE gathered data to assess their cost-effectiveness. Now, as these agreements come to an end, both treatments face a crucial review.

    Read more

  • NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam

    NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam

    SMA UK are proud to join together with Treat SMA and MDUK to bring you this webinar about NICE’s upcoming Multi Technology Assessment for Spinraza and Risdiplam. 2024 sees the end of the managed access agreements (MAAs) for the two treatments. An expert committee will gather to assess the new clinical and real-world evidence, along…

    Read more

  • Let the battle begin

    Let the battle begin

    This year the Managed Access Agreement for Spinraza and Risdiplam expires. The MAA was put in place five years ago so the pharmaceutical companies could gather more evidence to resubmit to NICE for approval on the NHS with Biogen extending their MAA by a year.

    Read more