Dementia: restricted access to drugs
Despite appeals, NICE’s decision to deny drugs such as Aricept to people with mild forms of dementia still stands. But what does this mean for people with the condition? Dan Parton reports.
In this article:
Heavy price
NICE position on Aricept
Breach of contract
Doctor’s perspective
Heavy price
Carers are a dedicated group of people, but few go to the lengths Fiona Bartlett did; she turned to crime and risked prison to help her elderly grandmother fight Alzheimer’s disease.
Fiona’s troubles began after her grandmother, Creamley Walker, moved from Kent to Basingstoke to be cared for by her. While in Kent, Creamley was prescribed Aricept, which helped to control her symptoms and slow the progress of the condition, but the NHS in Basingstoke refused to fund the drug.
Instead, she was prescribed tranquilisers that reduced her to the ‘mental state of a toddler’, according to Fiona. Unwilling to see her grandmother suffer any further, Fiona then decided to pay for Aricept herself.
But the cost of the drug – £250 a month – was crippling so she started to take out loans to cover the cost. But after reaching the point where she was refused further financial assistance, Fiona resorted to taking more out under fictitious names. When she started defaulting on those loans, her crime was exposed.
Fortunately, the judge was sympathetic to her plight, recognising that she had not done it for her own benefit and spared her from jail.
NICE position on Aricept
This may be an extreme example, but Fiona and her grandmother are by no means the only people affected by the restriction of dementia drugs on the NHS; it is estimated that up to 100,000 people with early-stage dementia are denied access to drugs such as Aricept.
This decision is a result of a 2005 ruling by the National Institute for Health and Clinical Excellence (NICE), the government body that produces guidance on which drug treatments should be funded by the NHS. It said that four drug treatments licensed for Alzheimer’s disease – Aricept, Exelon, Reminyl and Ebixa – should no longer be funded by the NHS.
While NICE acknowledged that the drugs were clinically effective, it said they were not cost effective. Following an outcry from lobby groups such as the Alzheimer’s Society, NICE changed its position and allowed people in the moderate stages of the disease – but not early or advanced – to be prescribed the drug treatments. The drugs remained freely available privately.
Since then, appeals led by Eisai, the manufacturer of Aricept, have gone to the High Court and Appeal Court with limited success; NICE has been rapped on the knuckles twice but its ruling on restricting the use of these drugs has not been overturned.
NICE was asked whether it would review its decision, but a spokesperson refused to comment.
Meanwhile, the Alzheimer’s Society is continuing to campaign for people with dementia to have unrestricted access to drug treatments. “People with dementia should not be forced to deteriorate before they get access to treatment that improves quality of life,” says Neil Hunt, chief executive of the Alzheimer’s Society.
“Unpaid carers save the UK £6 billion every year and many are already living on the poverty line, meaning treatment is out of reach. It makes no clinical, economic or moral sense to deny people in the early stages of Alzheimer’s access to drugs.”
Breach of contract
John Beaver, whose wife Beryl has early stage dementia, agrees. Beryl was also refused Aricept on the NHS but she and John are able to pay for the drug themselves.
John views the NHS’ position as a “breach of contract. We paid our National Insurance contributions throughout our working lives on the understanding that when we needed help we would be able to get it from the NHS,” he says. “I feel it is a breach of contract that when the time comes that we need help, they won’t pay for it.”
He wants NICE to reverse its decision and allow the NHS to prescribe the drugs for all patients – he believes Aricept is worth every penny. “It has slowed down what was happening quite tremendously,” he says. “Beryl is in her third year [of treatment] now and there hasn’t been a lot of difference in the past 12 months.”
Indeed, John believes Aricept has given Beryl an extra few years of activity. He says they are making the best of their time together, going out and doing activities as much as possible. “We are normally very active; it is not often that we stay in all day,” he says.
While Aricept is costly, savvy people can save money by shopping around for the best price, John says. In his local area of Formby, Merseyside, he has found pharmacists selling a 28-day supply of Aricept for £130, whereas others only charge £89.
Doctor’s perspective
Nevertheless, Dr Carolyn Chew-Graham, a GP in Manchester, says there are several ways people with early stage dementia can help to slow the progress of the condition without using drugs.
“Typical lifestyle advice includes keeping active; maybe playing Nintendo, going to the library, watching films, whatever they would normally do, and supporting carers to help people do that,” she says. “Also encouraging families to keep people active rather than becoming dependent.”
Carolyn adds that tending to any physical health problems, especially conditions like hypertension – high blood pressure – high cholesterol or the effects of smoking is important because those can make the symptoms of dementia worse. “If a patient has a lot of physical problems then you optimise their physical care using appropriate medication.”
This advice remains relevant when dementia becomes more advanced and the person with the condition may be able to access drug treatment, Carolyn adds.