Petition calling for ‘life-changing’ MS treatment funding handed to Parliament – Stuff

ROBERT KITCHIN/Stuff

Joan Perry, left, presents ACT deputy leader Brooke van Velden, right, with the petition calling for stem cell therapy to be available for people with multiple sclerosis in New Zealand.

A 10,000-strong petition to Parliament on Tuesday asking Health New Zealand to extend game-changing stem cell treatment to multiple sclerosis (MS) patients has been delivered to Parliament.

The petition was presented to ACT deputy leader Brooke van Velden who will present it to Parliament. The group of about 20 who presented the petition were joined by Green MP Golriz Ghahraman who also has MS.

Aucklander Joan Perry, whose daughter Anne Besley has MS, started the petition which 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.

READ MORE:* People with multiple sclerosis unable to access 'life-changing' treatment in NZ* Multiple sclerosis patient calls for 'life-changing' treatment to be funded in NZ* Multiple sclerosis sufferer says stem cell treatment in India has 'saved her life'

Anne Besleys MS has gone into remission since her stem cell treatment in 2019.

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 Aucklands 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.

ROBERT KITCHIN/Stuff

Green MP Golriz Ghahraman (far left), who has MS, says she would consider the stem cell treatment if it is available in New Zealand. Right: Joan Perry, who started the petition calling for stem cell therapy to be made available for MS patients.

Ghahraman said she would consider stem cell treatment if it was available in New Zealand and hoped the petition would have an impact for public healthcare to provide the most effective options to everyone regardless of their means.

People are ruling it out because they know they cant afford it, she said. In New Zealand, its very few people who would ever be in a position to go.

Van Velden said New Zealand needed better oversight and transparency about the types of medicines and treatment that New Zealanders have access to.

I would like to see more forward planning in New Zealand about the newer medicines, she said. We are falling behind the rest of the world.

ROBERT KITCHIN/Stuff

Brooke van Velden, right, wants to see better forward planning for medicine and treatment options in New Zealand. Left: Petitioner Joan Perry.

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 didnt 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.

Supplied

Bronwyn Hutchison had to travel to Mexico to receive Autologous Haematopoietic Stem Cell Transplantation for her MS diagnosis as it is not available in New Zealand.

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.

Read this article:
Petition calling for 'life-changing' MS treatment funding handed to Parliament - Stuff