MS: Busting the Myths
September 14, 2022 | Advocacy, Treatments
Autologous Hematopoietic Stem Cell Treatment (aHSCT) is an intense chemotherapy treatment which aims to wipe out harmful immune cells and rebuild the immune system. aHSCT is a life-improving treatment halting the disease and disability in its tracks. A person receiving aHSCT will potentially need NO further treatment. Following treatment, many PwMS report improvements to mobility, cognition and fatigue. These symptoms are major barriers to maintaining employment, providing for families and contributing to the economy. Following treatment many return to paid employment.
In studies comparing clinical outcomes of aHSCT to available Disease Modifying Therapies (DMTs), aHSCT outperforms conventional treatments. Results show higher rates of improved disability, halted progression, reduced relapses, reduced brain lesion volume and overall improved quality of life. aHSCT can be a safely managed and efficacious treatment option.
AHSCT is already routinely performed across NZ as a treatment for blood cancer. Despite the clinical evidence and high-level clinical support for its use, patients in NZ with active relapsing MS are still being denied access to this proven, cost-effective treatment.
Currently PwMS are privately raising between $70-$120,000 to pay for overseas treatment. Going overseas places undue mental, physical and financial pressures on PwMS and their whānau. Two of the most commonly used mADMTs, Natalizumab (Tysabri) and Fingolimod (Gilenya), have an average yearly cost to the health budget of $19,915 and $31,790, respectively, per patient. Patients potentially can remain on DMT over their lifetime, potentially 25+ years. The cost of delivering aHSCT in NZ however, has been calculated to be $50,000 per patient. The person may need no further treatment. A DHB initiated Cost Benefit analysis shows that the cost of aHSCT is less than the cost of DMTs for two years.
Since 2017 MSNZ has been advocating for the availability of aHSCT for patients with highly active MS that are not responding to current treatments. Our efforts have included commissioning an independent evidence review, meeting with the Ministry of Health, and bringing in specialists from overseas.
Joan Perry is the mother of a person with MS who underwent aHSCT in India in 2019. Her daughter Anne has been in remission since her treatment and returned to work as a nurse vaccinator. After seeing the life-changing impacts of aHSCT on her own family, Joan set up a petition calling on Parliament to intervene and to help ensure other families get the same opportunity without the financial expense and mental health impacts of sending a loved one overseas for a treatment that is readily performed here in NZ. MSNZ supported Joan, promoting the petition through our networks.
On July 26th the 10,903 signatures collected were presented to Brook van Velden, ACT Deputy Leader alongside Golriz Ghaharaman, Green MP and a person with MS, prior to it being read in the house.
We have since made a submission to the Petitions Committee, which has now been referred to the Health Select Committee for review. Our submission further details the benefits of making aHSCT an available treatment option. We are calling on the Government and Health NZ to allocate the necessary resources to make Autologous Haematopoietic Stem Cell Transplantation (aHSCT) an available treatment option in NZ for patients with multiple sclerosis. We await the outcome of this submission and will provide further updates as these become available.