Rare Diseases: Medical Treatments
The question
To ask the Secretary of State for Health and Social Care, what discussions he has had with NICE on considering the potential impact of improved carer wellbeing on the economy in its assessments of the effectiveness of treatments for rare diseases.
Answered by Karin Smyth
In making its recommendations on new medicines, the National Institute for Health and Care Excellence (NICE) takes into account all health-related costs and benefits, including health benefits to carers. It does not, however, take into account wider societal or economic considerations. Taking a wider perspective could have unintended consequences such as reducing access to treatments for patients who are disproportionately older, economically inactive, or have greater care needs. NICE’s methods are set out in its published health technology evaluations manual, which is available at the following link:
https://www.nice.org.uk/process/pmg36
When presenting health effects for carers, evidence should show when the condition is associated with a substantial effect on a carer’s health-related quality of life, and how the technology affects carers. This applies for all therapies, including therapies for rare diseases. NICE appraisals specifically consider health-related quality of life, for both patients and carers, rather than quality of life as a whole.
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