MS: Busting the Myths
September 4, 2023 | Advocacy, Media, Progressive, Treatments
A seven year battle on behalf of hundreds of people living with the most debilitating form of Multiple Sclerosis has been won – with Pharmac agreeing to fund Aotearoa New Zealand’s first ever treatment for the disease variant from October 1st.
Multiple Sclerosis New Zealand (MSNZ) says the decision to fund Ocrelizumab is hugely positive for the 10-15 per cent of MS patients living with Primary Progressive MS (PPMS) and will actively improve the lives of those who have, until now, been given little hope of treatment.
“It is a decision we truly welcome,” says MSNZ President Neil Woodhams.
“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.”
“PPMS causes symptoms to gradually and consistently worsen, whereas in other forms of MS people experience relapses with a later recovery. Ocrelizumab has been proven in trials to delay time-to-wheelchair by 7 years, allowing people to continue working, supporting their families and whānau, and living well,” says Woodhams.
Pharmac’s decision is expected to help 85 patients in the first year, climbing to 201 people by year 5. While Ocrelizumab is available in 26 other countries, New Zealand will be the first in the Asia-Pacific region and one of only four English speaking countries with funded access.
MSNZ , which has been advocating for this decision since 2017, says ethical concerns still remain however – particularly over Pharmac’s stopping criteria for the drug.
“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,” says MSNZ National Manager Amanda Rose.
“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.
“The longer MS progression can be kept at bay, the more New Zealand will experience a cost benefit. It’s well known that as MS progression advances, so do costs to individuals, the health and social sectors. Continuing Ocrelizumab access beyond 6.5 will reduce the burden on families, whānau and the respite and residential systems.,” says Rose.
MSNZ is pleased that Pharmac has now also extended permission to prescribe the drug to GPs as well as consultant neurologists, allaying concerns over current waitlist times to see a neurologist nationwide.
“This is a sensible and welcome decision. Authorising GPs to oversee the 20 metre walk and prescribe treatment will speed up the process for patients and reduce pressures. Many patients with PPMS won’t have seen a neurologist for many years, falling off the radar due to the fact there was no treatment available for them. Now they can reach out to their GP who knows their health situation best,” says Rose.
Concern remains however that PPMS patients with other significant health problems may still need a neurologist referral from their GP to gauge their suitability for Ocrelizumab, due to their more complex health needs.”
“While we are ultimately delighted by this Pharmac decision, our hearts go out to those patients for whom this news has come too late to help them,” says Neil Woodhams.
“For those people with PPMS who can now be helped, MSNZ urges them to contact their GP or reach out to their local neurology team.”
ENDS
For interviews please contact:
Neil Woodhams – MSNZ President: 021 531 654 president@msnz.org.nz
Amanda Rose – MSNZ National Manager: 03 366 2581 amanda@msnz.org.nz
For more information, see Pharmac website.