We have been asked to seek member involvement in a health-related consultation for the Scottish Government. I have largely copied the wording we were sent, but have tried to translate the worst bits of government-speak into ordinary language
The charity has contributed significantly to an application to get a new drug treatment approved for use in NHS Scotland. I am delighted to say that this has been successful and Upadacitinib (called Rinvoq by the manufacturer) will be available as an option for treating GCA.
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It is a few years since Tocilizumab (TCZ) was approved for use in treating GCA and it has proved to be very effective in certain cases.
We have been asked to help with an international project aiming to develop guidelines on the
treatment of GCA. The project team is led by Christian Dejaco (Italy/Austria) and Carol Langford
(USA) and UK members are Bhaskar Dasgupta, Sarah Mackie and Rashid Luqmani. In addition, our
own Lorna Neill is the UK patient representative.”
It is always good to see the NHS consulting with patients before developing a policy, in this case about implantable medical devices. Many of our members may have been fitted with lens replacements, pacemakers, vascular shunts or similar.