Criteria for Multiple Sclerosis drugs 'budget not evidence based': Expert

Multiple Sclerosis patients currently lose access to the drugs if their disability score increases by 2 points or exceeds 4.5 out of 10 and does not improve within six months. Photo / 123RF

Pharmac is weighing up calls from Multiple Sclerosis NZ to relax an "outdated and unfair" funding criteria resulting in hundreds of MS sufferers missing out on the benefits of the life-enhancing drugs.

MS NZ's submission urging Pharmac to start people on the drugs earlier and keep them on it for longer is to be further considered by the agency's primary clinical committee in November.

MS patients currently have their disability progress graded between 0 and 10, where the higher score indicates the greater disability. Under the current criteria patients lose access to the drugs if their score increases by 2 points or exceeds 4.5 and does not improve within six months.

But MS NZ vice president Neil Woodhams said the funding did not go far enough. MS NZ wants sufferers to be funded for the drugs until they reach a level of 6 or 6.5 and to be eligible to start the drugs based on MRI activity rather than having to wait for a second symptom or relapse as they do now.

World-leading Australasian neurologist and MS Researcher Professor Helmut Butzkueven, who presented to Pharmac in May, said Pharmac's criteria around who can access Government funding for the drugs goes against international evidence and means some of the sickest MS patients who would benefit the most from the drugs were missing out.

He said the Government agency was making its decision based on its budget and not evidence.

MS NZ estimates about 900 people are currently receiving the funded drugs and a loosening of the criteria would mean a further 500 to 600 people would qualify to have the drugs funded.

"The results of long-term outcome studies show these drugs are of greatest benefit in the sickest patients, where they significantly delay ongoing progression of disability and consequent loss of employment and quality of life."

Butzkueven, who works at The Alfred Hospital in Melbourne, said while Pharmac must be acknowledged for leading the way in funding new generation drugs, its criteria meant patients who deteriorated on a drug by a certain amount then had to stop the medication.

"That effectively means if you have very active MS and the drugs are slowing that down significantly, but not perhaps completely then the response to having that severe MS might be that Pharmac is asking you to stop the medication which can result in disastrous consequences."

Butzkeuven said the drugs should be available to patients until the MS was so severe that they had entered the later stage of the disease and the medication was not useful.

"But people are basically stopped on these drugs far too early and this is at a time when their quality of life is not that badly impaired by the MS yet. On the basis of meeting a particular neurological score - a change in the neurological score - they stop the drug and all hell breaks loose."

He said Kiwi patients were full of fear and dread every time they were due to be scored by a neurologist, due to a fear of losing the funding.

MS NZ vice president Neil Woodhams said a loosening of the criteria would mean another 500 to 600 people would qualify to have the drugs funded.

Woodhams said in Australia the number of people with MS who were of the working age but not working had reduced by 10 per cent in the past eight years since they had better access to MS drugs and he believed New Zealand would see similar results.

Pharmac director of operations Lisa Williams said Pharmac said MS NZ's funding application had been considered by it specialist neurological advisory committee in July and the agency would seek further feedback from the Pharmacology and Therapeutics Advisory Committee (PTAC) when it met in November.

Williams said the application would then be considered as part of Pharmac's assessment process for funding applications once all the advice had been received.