March 16, 2022 | Advocacy, Treatments
MSNZ and those impacted by Multiple Sclerosis need your help!
As you may be aware, MS is an autoimmune disease where the body’s own immune system attacks the myelin sheath around nerves in the brain and spine. This interrupts messages sent by the brain to the rest of the body, causing many debilitating and life changing symptoms with arm, leg, bladder and bowel functions, sight and cognitive ability.
Autologous Haematopoietic Stem Cell Transplant (aHSCT) is a treatment where stem cells are targeted to replace or repair damaged cells or tissues. Aiming to ‘reset’ the immune system, stopping it from attacking the person’s own myelin sheath.
Overseas, aHSCT is proving highly effective, particularly for those with extremely active Multiple Sclerosis. Some with more advanced MS are also seeing their progression halted. aHSCT is not intended to reverse existing damage, but it can restart the immune response and halt further progression.
“I’ve had no relapses in the two years since my treatment in Mexico. aHSCT has returned some of my life options and most importantly given me more quality time with my children. I have returned to part time employment and just completed my Masters in International Development. It’s hard to describe my HSCT experience: It was the best of times, it was the worst of times”. Bronwyn
“In a heartbeat I would do it all over again in a flash. The improvements were instant, from no fatigue to very very clear head (no cog fog). I am now three years post-transplant, no relapses and have been med free ever since. Pretty amazing considering my Russian Haematologist said had I not had the transplant, I would be wheelchair bound within 6 months”. Keryn
“To have to leave your family and go overseas is just so hard and it’s risky flying home with lowered immunity, especially now with Covid, it’s even harder. My MS is stable which was the best news as I’m coming up to my 3 year stem cell birthday. For the most part I feel good! I count my blessings every day that I had the opportunity to have this treatment”. Celia
Since 2017, due to the overwhelming evidence and with the help of our supporters, MSNZ has been advocating for this treatment. A treatment that is already available for blood cancer patients in New Zealand and expressly supported by New Zealand Haematologists and Neurologists. Our efforts have included commissioning an independent report presented to the Ministry of Health, bringing overseas experts to NZ to discuss the positive role of aHSCT and writing to the Minister of Health to further urge his support for this cause. Despite the support and evidence provided, the treatment is still unavailable to those with MS.
Continuing to withhold access to this readily available treatment in NZ, will see more New Zealanders going overseas for a treatment which is readily available here, costing New Zealanders between $70-200,000 which they are self-funding or fundraising.
“I’ve got my daughter back” is a simple statement from dedicated advocate Joan Perry. Joan has set up a petition, having seen the incredible benefits aHSCT has had on her daughter Anne. Like us, Joan wants to see more New Zealanders with MS given the same opportunity, without the enormous financial and emotional expense they endured.
Please help make this possible by signing the petition
We know how much difference access to this treatment could make to so many, not only those impacted directly but also their husbands, wives, sons, daughters, mothers, fathers, friends and employers. So please, help us advocate for change.