Dialogue: Funding ban unfair to sufferers of dementia

PAMELA MELDING* wonders why Pharmac won't pay for medication proven to delay theprogression of dementia.

A speaker at the Alzheimer Disease International conference in Christchurch described those of us who are not affected by dementia as having a temporary able brain. None of us knows if brain disease will afflict us in later life.

Dementia is a terrible disease. It affects about 30,000 older New Zealanders and between 1000 and 2000 new cases emerge annually.

By destroying the brain, the disease diminishes a person's memory and ability to function. It devastates families who see their loved one's personality slowly disintegrate and disappear.

If that were not enough, most patients also have behavioural complications such as hallucinations, delusions, aggression, irritability or apathy that make caring for them difficult. The disease affects an individual, but many more suffer from it.

Dementia causes stress to caregivers from lack of sleep, isolates them from normal life and puts strains on family relationships. Caregivers have to give up jobs, family outings, movies and recreational activities that the rest of us take for granted.

The stress also increases their own risk of serious physical or mental illness. These are dementia's high intangible costs.

The victims have been US presidents, royalty, politicians, as well as ordinary people in every nation, creed or class. There are many subtypes of dementia and no cure for any of them, nor is there likelihood of a cure. There are possibilities for arresting the disease that may come to fruition in the next couple of decades. But, for now, all we have are a few medications that delay its progression.

They are available in New Zealand but they are not state-funded. If you need these drugs and are prepared to deplete your fixed assets by about $2000 a year, you can have them.

If you are poor, tough luck. The Government's drug funding body, Pharmac, will not pay.

The state does pay for the drugs in Australia and Britain, as in many other countries. Indeed, Britain's National Institute for Clinical Excellence (Nice), a body that provides patients, health professionals and the public with authoritative, robust and reliable guidance on current best practice, recommended the Alzheimer medications as an important adjunct in the management of the disease.

This view was echoed by the many international authorities at last week's conference. Despite extensive evidence, Pharmac says the best advice it has is that the drugs have limited use and it is not worth the investment of $2000 a person or national total of $6 million a year.

Who is giving this advice? It is not the advice of clinicians working with patients, or the literature, or the international gurus or authorities such as Nice.

Of course, Pharmac's job is to make some tough decisions on behalf of taxpayers. Is it right to say these drugs have limited use?

It is certainly right in saying the drugs have limitations. They are not curative. What they do is slow progression, delaying expensive institutionalisation.

The sooner the patient receives the drug, the better - and research indicates that they have a positive benefit on memory for about a year, sometimes more. What this year means is that the person gets their personality back for a time, is able to function better, gaining some precious quality time.

Not worth it? Limited? Ask the families what they think of this and they will tell you having their loved one back is a precious gift worth much more than $2000.

The drugs not only restore some function but can also halt those difficult behaviours that give families so much stress. On average, the drugs reduce caregiver's hands-on assistance by one hour a day. Limited, yes, but the cost of this precious hour of respite works out at about $6. Not value for money, says Pharmac. Well, you will not get a better example of the limited value placed by this government agency on informal caregiving or the stress it engenders.

It seems that Pharmac has a major problem with some drugs in distinguishing between cost benefit - a measurable therapeutic effect per buck when compared to other drugs versus cost effectiveness - the overall effect of both measurable and non-measurable impacts per buck.

The dementia drugs' cost benefit is certainly limited if you take only the measurable effect on memory into account. But their cost effectiveness for families is much greater. Two hundred dollars a month for medication is a significant barrier for many older people with dementia or their families, who then suffer the stressful consequences. Then the State picks up the far more expensive tab for institutional care.

The limited-use argument does not seem to apply to other fully funded drugs that slow the progress or delay disease, such as cholesterol lowering drugs or some anti-cancer treatments. It seems as if old people with dementia are being discriminated against.

Funding decisions are always political. A few thousand demented people and their stressed carers are not worth $6 million a year. In contrast, a failing airline and grumpy Australian unions are worth $850 million.

Remember, it could be any of us.

* Dr Pamela Melding chairs the Royal Australian and New Zealand College of Psychiatrists' faculty of psychiatry of old age.

nzherald.co.nz/health