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Image: © Alzheimer Scotland
Henry Simmons, Chief Executive Alzheimer Scotland
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The charity Alzheimer Scotland is calling for the creation of a special fund to open the door to the routine use of new treatments for people with dementia in Scotland. It follows the refusal for a second time by Scotland’s medicines gatekeeper to give the green light to the drug donanemab.
The Scottish Medicines Consortium (SMC) brings together health economists, NHS pharmacists, clinicians and industry and patient representatives to consider the cost effectiveness of every new medicine licensed for use in the UK.
SMC publishes monthly advice to Scotland’s NHS boards on whether each should be accepted for use, after weighing their cost against their likely benefits.
Today, following a review of its original advice in May 2025, SMC again said they could not recommend dementia drug donanemab, also known by its brand name Kisunla, for use in NHS Scotland to treat ‘the early stages of Alzheimer’s disease in adults who carry one or no copies of a gene called ApoE4’.
In a statement, SMC Chair, Dr Scott Muir said:
“SMC welcomed the resubmission for donanemab and recognises the need for new therapies for Alzheimer’s disease.
“However, having considered all the evidence, the committee was still unable to accept donanemab for use in the NHS in Scotland. They felt that there remains uncertainty around what the modest clinical benefit means for patients and their families, and, in addition, the company’s evidence around its cost effectiveness was not sufficient.”
Alzheimer Scotland says the system for assessing dementia drugs must change.
Chief Executive Henry Simmons says, the answer lies in the creation of an innovation fund and the introduction of dedicated pilot sites where promising new treatments can be tested in real world settings:
"The decision by the Scottish Medicines Consortium not to recommend donanemab for use by NHS Scotland after reviewing further evidence on its effectiveness is devastating for people living with dementia, their families and carers.
“This demonstrates the urgent need for change in the system used to assess dementia drugs if we have any hope of tackling this disease.
“We understand that the SMC has established assessment protocols and criteria, however we believe that moving from clinical trials into clinical practice based on the current process is not working.
“We would like to see a new element in the assessment process and that would be the introduction of dedicated pilot sites. These can be used to further test new promising treatments in meaningful clinical practice, before a decision on NHS provision is made.”
Growing evidence
Mr Simmons says an opportunity is being missed for people living with dementia and their loved ones:
“We know that in countries where these treatments are available there is growing evidence that they are more effective in preventing disease progression than the clinical trial evidence suggests. In our view this is the only real way we will get a proper assessment of these new drugs’ validity and potential for use on the NHS.
“We need a dedicated dementia drug innovation fund to be set up in order to take this forward and properly test any new promising treatment.
“Dementia is the UK’s biggest killer and people living with this disease, their families and carers have been waiting decades for treatments that effectively slow its progression.
“We owe it to them to have an assessment process that gives promising new drugs a chance to show their true value and to realise their life-changing potential.”
Read more: International recognition for Dundee trials team; Dementia campaign success to inform government actions; Action needed to deliver dementia ambitions
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