Guest Author - Sally Davies
In the long struggle against Alzheimer's Disease (AD), hope revived with a new generation of medications: donepezil, rivastigmine, galantamine and memantine. They are better known by the proprietary names Aricept®, Exelon®, Reminyl® and Ebixa®. The first three are best used in the earlier stages whereas Ebixa® can help with moderate to severe AD.
None of these has been claimed as a cure, but there is gathering evidence that they can reduce symptoms for some time. Eventually there will come an end point despite the medication. This is a painful moment for family, made worse perhaps when confronted with the decision to discontinue medication. Yet until researchers find a better treatment or cure, these drugs have much to offer.
Now a key body that guides Britain's NHS, the National Institute for Clinical Excellence (NICE) has concluded that they are all too expensive for NHS patients. This is not a final conclusion, and patients already in treatment may continue; but their report criticises published research trials, and complains that the drugs are not keeping people out of institutional care. NICE does not deny that some well designed studies show significant benefits, but regards these as secondary to outcomes such as “progression of disability”.
Unsurprisingly, families and support organisations dissent. The UK Alzheimer's Society (AS) says that their own extensive survey found improvements in agitation, delusions, anger, concentration and the ability to pass time constructively. Alzheimer's experts presenting to NICE pointed out that small measured differences in brain function can translate into big differences in a person's life.
While manufacturers and independent researchers agree that not everyone can benefit from drug treatment, failures are identified within a fairly short time; in which case treatment can be discontinued without harm or further cost. On the other hand, some of those who responded well to medication had dramatic improvements – for instance, from sitting silently and morosely to being able to read or follow a news broadcast.
Caregivers in particular appear to be shortchanged – twice over. NICE used an economic model that valued community care at the low standard currently provided by NHS. The AS however says that good quality care is the goal; the costs of which are absorbed by families who fill in the gaps. At the same time, the benefits to caregivers of “small” improvements are not taken into account. Since it is difficult to measure quality of life numerically, the research methods used so far inevitably fail to do justice to these stakeholders, or to the patients. How can you put a measure on “feeling alive”, for instance? On being able to turn on the radio, relax and leave the room?
One thing is clear: more research is needed, but not more of the same. We've got some statistics, but still lack the qualitative studies that make them meaningful. As caregivers, doctors, nurses, therapists and above all patients know, a human being is more than a set of “functions”. This quote from a respondent to the AS survey says it all: “Ebixa® has helped to greatly increase the time my wife and I have been able to be together”.
Voters – take note. The restriction of access to treatment is a political issue, even though it might look like scientific business. Older people form a majority and are likely to vote – so make sure your MP is aware of this issue! To find out more, go to http://www.alzheimers.org.uk where there is a link you can use to let NICE know what you think, and another to contact your MP if you live in the UK.