MS: Busting the Myths
July 26, 2022 | Advocacy, Life with MS, Media, Treatments
A 10,000-strong petition asking Health New Zealand to extend “game-changing” stem cell treatment to multiple sclerosis (MS) patients is set to be delivered to Parliament.
The petition started by Aucklander Joan Perry, whose daughter Anne Besley has MS, calls for autologous haematopoietic stem cell transplantation (aHSCT) to be made available for selected patients in New Zealand.
Doctors extract blood stem cells and grow them in a laboratory, before the patient undergoes chemotherapy to suppress their immune system. The blood stem cells are then re-introduced back to the body to restart the immune response and stop the disease from getting worse.
At present, it is only available in New Zealand for blood cancer patients.
Advocates for the treatment say it is already proven and readily available in Australia and the UK for patients exhibiting early and aggressive symptoms.
Besley, a former operating theatre nurse at Auckland’s Middlemore Hospital, had to go to India for the treatment in late 2019 at a cost of $42,000. Since then, her MS has gone into remission, allowing her to return to nursing part-time as a Covid-19 vaccinator.
“It comes with huge financial and mental challenges,” she said. “Being isolated in a foreign country for a month is an emotional and physical struggle, especially when you are so weak while undergoing treatment and having a severely compromised immune system.”
Bronwyn Hutchison is a Wellington mother of two who was diagnosed with MS in 2011. She is already on drug-based treatment in New Zealand, meaning trips to hospital for infusions every six weeks and the side effects taking a physical toll.
Hutchison came across stem cell treatment in her research in 2019 after a “painful” relapse.
She attended a private clinic in Mexico to get the four-week treatment, but had to raise more than $100,000. There have been had been no relapses in the three years since.
“I didn’t have that money sitting around,” she said. “That was a year of my family and friends using all their spare time, and I was really lucky with the community support.
“My daughter, who’s now 9, is still recovering from the effects of me leaving for a month and thinking I might die. I don’t think the trauma would have been the same if I had been able to have the treatment here.”
Multiple Sclerosis Society of New Zealand, which has been asking the Ministry of Health for five years to approve and fund stem cell treatment for MS, backed the petition.
President Neil Woodhams said patients were “fed up” waiting for it to be made available here, while more than 100 had gone overseas to countries like Singapore, Mexico, India and Russia for self-funded treatment.
“People are still going overseas for treatment and in a Covid environment, it is risky,” he said. “It is a one-off treatment and if it is successful, they don’t have to worry about taking a drug every day or week or going to the hospital every six months.”
ACT deputy leader Brooke van Velden will receive the petition and present it to Parliament.
Article published by Stuff. 26/07/22: https://www.stuff.co.nz/national/health/129372834/10000-people-sign-petition-calling-for-lifechanging-ms-treatment-funding?cid=app-android&fbclid=IwAR30SIVJ1AUE_Y1LKX7H04xWWqiTkMo9TuvDKl0ndcKEQ-UI6pjNCjZCSp0