MS: Busting the Myths
May 3, 2021 | Uncategorised
Overseas, Autologous Haemopoietic Stem cell Treatment (aHSCT) is having a profound effect on the lives of many people, particularly those with highly active Multiple Sclerosis. Some with more advanced MS are also seeing their progression halted. aHSCT is not intended to reverse the damage done, but it can restart the immune response and halt further progression.
aHSCT is a treatment readily available in NZ for blood cancer patients.
Since 2017, Multiple Sclerosis New Zealand has been advocating for the introduction of aHSCT in NZ based on the overwhelming evidence to support it. Our efforts have included commissioning an independent report presented to the Ministry of Health and bringing overseas experts to NZ to discuss the positive role it can play. Earlier this year we also wrote to the Minister of Health to further urge his support for this cause.
A Haematology and Neurology Special Interests Group undertook their own investigative work and expressed its support of the use of aHSCT for those with highly active MS who are not responding to Disease Modifying Therapies.
Despite this support and evidence provided to the Ministry of Health and relevant DHBs, considered to have the capacity and expertise to treat MS patients, treatment is still unavailable.
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 in New Zealand. This is costing New Zealanders between $70-200,000 which they are self-funding or fundraising.
Dedicated advocate Joan Perry has set up a petition having seen the incredible benefits aHSCT has had on her daughter Anne. Like us, she now wants to see more New Zealanders with MS be given the same opportunity, without the enormous financial and emotional expense they endured. Multiple Sclerosis NZ endorses this petition.
Please take a few minutes to sign the petition and help to amplify our voice!
The petition closes 30 June 2022, please share with your networks.
“My daughter Anne was on Tysabri, and after 2 years in 2019, became JCV positive with a high viral loading and her chance of contracting PML was high. Her Neurologist told her she had an aggressive case of Remitting Relapsing MS and without Tysabri, it was almost inevitable she would progress to Secondary Progressive MS. In NZ, where there is no treatment for this form of MS, she was now facing life with permanent disabilities. This left her with just one option – Autologous Haemopoietic Stem cell Treatment (aHSCT).
AHSCT has been shown to be a far more effective and cheaper treatment option for MS than long term use of disease modifying medications.
Despite the efforts MSNZ and a Haematology and Neurology Special Interests Group advocating to the Ministry of Health to make aHSCT an available option in NZ it is still unavailable.
With no other options left for Anne but to consider aHSCT. She was referred with the support of her Neurologist for a consultation with Dr Richard Doocey, Head of Stem Cell Transplants for Leukaemia patients in Auckland. After much research by Anne, along with guidance and support from Dr Doocey, it was decided that Anne would seek treatment at a reputable facility in New Delhi, India.
Anne and a group of amazing friends & family set about fundraising. The need to get the treatment started was urgent. With much help and hard work, Anne and her support person Brett, her husband, left for New Delhi mid October 2019.
The treatment is harsh, firstly drugs are administered to increase the available stem cells then they are harvested and frozen. The next phase is chemotherapy which is necessary to wipe out the immune system. As soon as that is completed the stem cells are reintroduced. This part of the process from beginning to the stem cell replacement took two weeks, the following two weeks, Anne was is strict isolation, supported by the Specialist & the medical team in New Delhi.
Anne returned to Auckland on the 17th November 2019. This was the best day for us and our teenage granddaughter who lived with us during this time. It was an emotional reunion for us all.
To date Anne is doing so well, she is drug free and while the treatment will not repair the lesions of the previous attacks to date there is no MRI or clinical evidence of any relapse or new lesions in either the brain or spinal cord. Best of all, Anne has achieved a full remission and has been able to return to work as a part-time Registered Nurse.
It matters that patients with MS, an agonising, debilitating and frightening disease, get access to treatment options which are internationally accepted. While we were pleased Anne was able to be treated at a facility considered to be gold standard, it has been incredibly difficult to have them face this treatment alone in a strange county.
I cannot understand why aHSCT is not being seriously considered in NZ considering the cost and outcome is far better than the current treatments. The overwhelming red tape involved seems like a huge mountain of bureaucracy, nonsense to put it bluntly!
The cost of aHSCT is not that considerable when comparing against DMTs which may cost hundreds of thousands per patient over their lifetime. Funds and people could be saved by this procedure! It frustrates me that we live in such a wonderful country but the medical care for this disease is really behind the times.
Please consider signing our petition and helping us to raise this issue and see access made available for the safety of New Zealanders with MS.
Thank you
Joan and Anne