Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to improve the (a) diagnosis rate and (b) management of Tumour Induced Osteomalacia.

While the Department is not taking steps to ensure early diagnosis of tumour induced osteomalacia specifically, the 2021 UK Rare Diseases Framework aims to improve the awareness of all rare diseases which includes this condition. England’s second Rare Diseases Action Plan, published in February 2023, reports on progress made to help patients get a final diagnosis faster and outlines new actions such as commissioning research on how best to measure the diagnostic odyssey.

The Department asked the National Institute for Health and Care Excellence to carry out a single technology appraisal of burosumab for treating FGF23-related hypophosphataemia in tumour-induced osteomalacia, but the company was not in a position to apply for a marketing authorisation from the Medicines and Healthcare products Regulatory Agency for this indication and so assessment has been suspended.