I recognise that there is unmet need for licensed treatments for people with systemic AL amyloidosis.
As you will know, the devolution of healthcare in Scotland means that it is up to the Scottish Government to decide on the provision of treatments relating to systemic AL amyloidosis. In England, the National Institute for Clinical Excellence (NICE) provides approval and guidance on medicines for deployment in the NHS in England.
In its final appraisal, NICE ultimately concluded that daratumumab in combination had not been shown to increase how long people live, and was not a cost-effective use of NHS resources.
NICE also stated that – at the present time – daratumumab does not meet the criteria for inclusion in the Cancer Drugs Fund, although the Committee acknowledged further data collection may resolve uncertainty around overall survival.
However, I completely recognise why the decision by NICE will be extremely disappointing to people living with systemic AL amyloidosis.