MS: Busting the Myths
July 26, 2022 | Advocacy, Life with MS, Media, Treatments
A private petition is being delivered to the steps of parliament at lunchtime today – calling for the government to green-light a treatment, readily available overseas, which is delivering remarkable improvements to the health of many patients with multiple sclerosis (MS) worldwide.The petition is the work of patients and their families, frustrated by Ministry of Health and DHB inaction in failing to approve and fund Autologous Haematopoietic Stem Cell Transplantation (aHSCT) – a petition strongly backed by Multiple Sclerosis New Zealand (MSNZ).
MSNZ President Neil Woodhams says they’ve been lobbying the Ministry of Health for the past five years to approve aHSCT. Yet, despite overwhelming evidence and high-level clinical support for its use, patients in Aotearoa New Zealand with active relapsing MS are still being denied access to this proven, cost-effective treatment.
“We are fed up waiting for aHSCT to be made available here,” says Neil Woodhams. “Approving this safe, widely-used and readily-available treatment for clinically suitable New Zealand patients is a no-brainer. aHSCT can deliver solid and often remarkable results for selected patients with active relapsing MS, even some with quite advanced disease.” “We are calling on Health New Zealand to prioritise funding for a ‘centre of excellence’ for aHSCT in Aotearoa, where appropriately screened MS patients can access this therapy and have their progress followed through participation in ongoing observational trials.”
Readily available in Australia and the UK for selected patients exhibiting early and aggressive disease, aHSCT is an intense chemotherapy treatment which aims to wipe out harmful immune cells and rebuild the immune system. Already widely used in New Zealand as a treatment for blood cancer, aHSCT doesn’t reverse MS damage but can restart the immune response and halt further disease progression.
MSNZ began advocating for the introduction of aHSCT in 2017, including commissioning an independent report which it presented to the Ministry of Health, and bringing overseas experts here to discuss the positive role aHSCT treatment can play. A Haematology and Neurology Special Interests Group, compromising the country’s leading experts, also undertook its own investigative work, expressing support for the use of aHSCT for those with highly active MS who are not responding to existing drug treatments. Added to this, an MSNZ-initiated OIA request to the Auckland DHB last year produced paperwork from meetings held by expert clinicians from the Northern Region Clinical Practice Committee. They showed overwhelming support for the use of aHSCT in selected patients with relapsing remitting MS, with clinicians stating they had the capability to deliver the treatment but not the capacity.
“The Committee commissioned its own health economists, who showed clear cost benefits for the treatment. It states the cost of aHSCT treatment as $50,000, with the payback in health dollars being less than two years when the estimated cost of the average patient’s MS drugs are included, with even greater savings down the track. At a time therefore when our health system is under huge cost pressures it makes no sense that this cheaper, alternative treatment isn’t made immediately available,” says Woodhams.
MSNZ says the Minister of Health advised last year that while the ministry’s Haematology Work Group had considered the aHSCT issue, there were still factors to be resolved, including estimating the volumes of treatment required, and commissioning and implementing the treatment amongst DHBs. The Minister also said the Health and Disability System Review would be focussing on the introduction of new technologies and treatments. However, MSNZ says its disappointed the Ministry has not engaged with it as part of that system review and that little more has been done since 2019.
Due to its unavailability here, over 100 New Zealanders have self-funded their own aHSCT in private clinics overseas, most commonly Russia, Mexico, Singapore, and India.
“This has created a sense of desperation for some Kiwi MS patients, having to find or fundraise around $70-$120,000 to pay for overseas treatment while the clock is ticking and their disease threatening to progress beyond the stage where aHSCT could potentially help them. Added to that has been the added stress and fear of such medically vulnerable patients having to take on international travel during COVID-19.”
“It’s frankly inhumane. The government needs to just get a move on, listen to the overwhelming advice of its clinical experts and fund aHSCT here as soon as possible, “says Woodhams.