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Pharmac has widened access to medications used to treat multiple sclerosis and haemophilia, with one group of campaigners saying it is a relief after a seven-year battle.
The government's drug-buying agency made the announcement on Monday, saying those with the most debilitating form of multiple sclerosis (MS), and those with severe haemophilia A would soon be funded to receive medications not available to them before.
Both groups of patients will be able to access the drugs from 1 October.
The drug ocrelizumab (branded as Ocrevus), had already been funded for those with the relapsing remitting type of MS since 2019, but is about to be made available to those with the most debilitating form of MS, primary progressive MS (PPMS).
Pharmac said it was the first funded treatment for primary progressive MS.
While those with severe haemophilia A, who are more likely to bleed spontaneously and develop resistance to standard haemophilia treatments, will be able to access the drug emicizumab, which helps the blood to clot.
Relief after long "battle", but concern for those cut off because of a disability score - MS NZ
MS New Zealand president Neil Woodhams said supporters of those living with PPMS had spent seven years lobbying for more support and access to ocrelizumab.
Multiple sclerosis is a disease of the central nervous system that results in a wide range of sensory, cognitive, and physical symptoms, and can become severely disabling over time. Those with primary progressive MS experience steadily increasing worsening effects.
Ocrelizumab slows immune cells from damaging nerves and the insulation around them.
Pharmac has announced more people with multiple sclerosis will have access to ocrelizumab. Photo: Supplied
"Ocrelizumab has been proven in trials to delay time-to-wheelchair by seven years, allowing people to continue working, supporting their families and whānau, and living well," Woodhams said.
"Unless you've been one of the very few granted compassionate access to this drug, it's been completely out of reach, with PPMS patients denied access to any disease modifying therapies whatsoever. We're delighted that Pharmac will now fund ocrelizumab for these deserving PPMS patients."
About fifteen percent of people with MS have PPMS, and MS New Zealand said they were pleased that GPs, not just consultant neurologists, would be able to prescribe ocrelizumab to patients with PPMS. This would speed up patient access in light of long nationwide waitlists for neurologist referrals.
Pharmac's decision was expected to help 85 patients in the first year, and that could grow to 201 people by the fifth year, MSNZ said.
However, MSNZ National Manager Amanda Rose said they were still concerned that access to funded ocrelizumab is cut off according to a measure of disability.
"This funding announcement makes ocrelizumab available for people with a maximum disability score (EDSS) of 6.5 out of 10, with a requirement to prove you're capable of walking 20 metres without stopping using one or two walking aids," Rose said.
"Once your disease progresses beyond that 6.5 number your access to the drug will be removed as its deemed you'll no longer experience benefit from it.
"We disagree strongly with this. People at this 6.5 level are still capable of living well and independently. Trials are ongoing into the importance of maintaining upper extremity function. We will be continuing to urge Pharmac to consider this data and hopefully in time either remove the stopping criteria altogether for all PPMS patients, or increase ocrelizumab access to 8 on the EDSS scale.
Rose said the longer the progress of the disease could be slowed in patients, the larger the cost benefit for New Zealand.
"It's well known that as MS progression advances, so do costs to individuals, the health and social sectors.
"Continuing Ocrelizumab access beyond [EDSS] 6.5 will reduce the burden on families, whānau and the respite and residential systems," Rose said.