Margaret Wesley: Arthritis patients know the real price of this drug ruling

As chief executive of Pharmac, Wayne McNee was in a hurry to justify withholding funding for the new generation arthritis drugs, TNF inhibitors, and to extol the great job Pharmac does. On the whole it does.

While Pharmac has funded medication for depression, chronic obstructive pulmonary disease, diabetes, raised cholesterol and hepatitis C over the past year, that's no consolation for rheumatoid arthritis sufferers with aggressive erosive disease.

TNF inhibitors wont be dolled out as a first line of treatment for all aggressive forms of rheumatoid arthritis. As I understand it, the criteria for treatment with TNF inhibitors (when it is introduced), will first require patients to have tried the medication lefunomide as well as triple therapy (a combination of three different immuno-suppressant drugs, all of which have been on the market for the past decade).

Furthermore, research by Dr Fiona McQueen into the use of MRI scans of the wrist will determine very early in the disease process which patients will go on to develop severe erosive joint disease, which means these patients can be selected.

There is a huge range of severity. Let's face it, we're talking about 300-400 patients.

Mr McNee's costing doesn't take into account loss of income. Over a lifetime of disease this adds up to a considerable personal and public cost by way of taxes. Neither does he count the human cost.

I know about these things perhaps better than Mr McNee. I have RA and I am one of those who may benefit from TNF inhibitors. And let me tell you, I know the human cost.

For those who don't know what RA is, it's a systemic inflammatory disease of the soft tissue around the joints - typically the hands, wrists, feet and ankles. Often the knees, hips and shoulders are affected and sometimes the neck.

I have a very aggressive form of RA involving all these joints to a greater or lesser degree. Synovial fluid gathers in the tissue around affected joints and an erosive process eats the bones and surrounding tissue - like soaking bones in battery acid.

It is a burning pain which (during very active disease) is as intense as childbirth and, as with childbirth, it's impossible to stand or walk, or do anything else. Even pushing back the bedcovers is agony. Pressure of one's body weight on the bed is intolerable: there's no such thing as sleeping easy on painful shoulders and hips.

Pharmac doesn't take this into account, nor does it recognise the cost on other family members and caregivers.

For those of us who have severe and erosive RA there is little time. Within two years of onset all my fingers on both hands were dislocated and I was put on the waiting list for joint replacement. By the time my name came forward for surgery my wrists needed reconstructive work and this had to be done before knuckle replacement.

These four procedures were done over two years. By then my feet needed surgery - and so it goes on. After surgery on my right foot I gave up. Work on my hands was starting to deteriorate: the reconstructive process was not keeping ahead of erosive disease.

Eighteen months ago I had the first three vertebrae in my neck fused because there was 8mm of movement on the spinal canal and the instability was life-threatening. The wait for spinal surgery was like living with a loaded gun to my head. Already the 4th vertebra is sliding out of alignment, which means I am looking at further surgery in the not too distant future.

TNF inhibitors may well halt the destructive process and preserve my neck from further degeneration. As for the risk of severe drug reactions, Mr McNee overlooks the fact that all drugs have the potential to seriously harm. When disease is as progressive as mine, then the potential risk involved in trialling any new medication is comparatively small.

It's 12 years since I was diagnosed and I have largely been unable to work. As a trained teacher with secondary school qualifications, I conservatively estimate the loss of earnings to be approximately $40,000 a year, or $480,000 over 12 years, and lost taxes to be (a conservative) $144,000

When these costs are added to those surgery, hospitalisation (two or three times some years), medication and home care over 12 years, you tell me: what are the real costs to the taxpayer?

It seems that balancing the funding budget is a case of borrowing from Peter to pay Paul. Ultimately, according to Mr McNee's priority of funding, it is patients with the worst form of painful and erosive RA who are expected to fund other areas of health spending.

Let's be absolutely clear about the costs involved - so the taxpayer knows who really pays

* Margaret Wesley lives in Auckland.