A shortage of neurologists is leaving West Coasters with multiple sclerosis waiting months for a newly funded drug that can stop the debilitating disease in its tracks.
Pharmac agreed in September to fund ocrelizumab, branded as Ocrevus, for people with primary progressive multiple sclerosis (PPMS), giving hope to hundreds of patients.
The drug can halt or slow the decline into disability and loss of bodily functions that are features of the autoimmune condition.
But in the past the drug-buying agency has funded the medication only for people with the relapsing and remitting type of MS.
West Coast MS nurse Belinda Butterfield says the recent funding announcement has sent people around the country flocking to GPs in the hope of a prescription.
“Referrals have been pouring in all over New Zealand. It’s not just the Coast.”
But any hopes of timely treatment have been quickly dashed, Butterfield says.
“GPs are referring people to neurologists to be assessed to see if they meet the criteria for the drug and that’s creating a huge bottleneck because there’s such a shortage of neurologists that it takes months to get an appointment.”
Pharmac says it has placed no restriction on who can prescribe Ocrevus as long as a neurologist has previously confirmed the diagnosis of MS.
“Any relevant prescriber can now make a special authority application for any funded multiple sclerosis treatment if they feel comfortable doing so.
“But as it is a complex process, in most cases we expect a neurologist will make the initial funding application.”
Butterfield, who’s employed by MSNZ, says it’s apparent GPs are not comfortable making that decision.
“You have to assess someone on what’s known as the EDSS scale. It’s a measure of disability and if they fall between 1 and 6.5 they’re eligible for the drug.”
Generally people who can still walk 50m with a stick or other aid would qualify, she says.
South hard hit
In many other regions, specialist nurses such as Butterfield have been delegated the job of assessing PPMS patients to speed things up.
But that’s not happening on the Coast.
Clients of Butterfield who’ve been referred by their GP for a neurology assessment have had letters from Te Whatu Ora Health West Coast telling them their appointment is considered “routine” and they might be seen within four months.
The risk is that some could fall off the eligibility scale in that time, losing their remaining mobility, Butterfield says.
“People with MS can be stable for ages then suddenly go downhill. In the past I’ve seen people with the relapsing type go into a wheelchair and even die waiting to be seen.”
Multiple sclerosis is two times more prevalent in the South Island than the North and the West Coast has the second-highest incidence in New Zealand, Butterfield says. Southland tops the list.
She has nearly 60 clients on her books and estimates a third have the progressive form of the disease.
“It’s tough for them knowing they could be getting a new lease of life with this drug and just hoping their symptoms don’t get worse while they wait and make them ineligible.
“They’re pretty unhappy.”
Health authorities are compiling lists of those who’ve been referred to neurologists but it will be well into next year before they receive any medication, Butterfield says.
High hopes
Treatment with Ocrevus is not as simple as swallowing a pill.
The drug is administered in hospital by intravenous infusion in two doses given a fortnight apart followed by maintenance dosing every six months.
Ocrevus acts on the immune system killing the B cells that are attacking the body’s nervous system and causing symptoms from fatigue to difficulty walking, cognitive fade and loss of bladder and bowel control.
The national manager of Multiple Sclerosis NZ, Amanda Rose, says expanding access to Ocrevus raises the hope for hundreds of MS patients and their families of slowed disease progression and prolonged independence with better quality of life.
“When the funding was first announced we thought this is great and we understood GPs would be prescribing it.
“But it became clear that there’s a lot involved in deciding if someone will benefit and some of these people haven’t been able to see a neurologist in years.”
Newsroom asked Te Whatu Ora Health West Coast a week ago for the number of PPMS neurology referrals in the region, the average waiting time to see a neurologist, whether it considers that acceptable and what action – if any – it might take to improve the situation.
The health authority has been unable to provide answers in that time.
Made with the support of the Public Interest Journalism Fund
