MS: Busting the Myths
November 9, 2017 | Advocacy, Life with MS, Research, Treatments
Following TVNZs Sunday programme last night on people with multiple sclerosis seeking stem cell transplantation overseas for their MS, the Multiple Sclerosis Society of New Zealand (MSNZ) confirms its support for the use of this treatment within a clinical trial setting under established international protocols.
“Current research shows that Autologous Haematopoietic Stem Cell Transplant (AHSCT) is a viable treatment option for people with MS who are early in their disease course, with highly active relapsing MS and have tried and failed at least one, if not two of the treatments currently funded by PHARMAC,” commented MSNZ Vice President Neil Woodhams. “The criteria for observational studies in Europe and Australia follow these criteria and we would like to see the same opportunity here in New Zealand.”
Earlier this year MSNZ met with the Acting Chief Medical Officer of the Ministry of Health to present the growing evidence to support the use of AHSCT. MSNZ is calling on the Ministry of Health to make AHSCT available on the public health system under an approved criteria based on the evidence. MSNZ believes the number of people who would qualify for the treatment would be relatively small.
“This is a prime opportunity for a process to be developed alongside an observational study and we are investigating options to link into wider international studies if we do not have the numbers here,” says Woodhams. “The treatment still comes with risks but many people with active MS and rapidly-increasing disability will seek any option to improve their quality of life.”
As part of MSNZ’s 50th Anniversary celebrations the Society recently invited international Stem Cell Transplant expert, Dr Riccardo Saccardi, based at Careggi University Hospital in Florence, Italy, to present at two public lectures in Christchurch and Auckland.
MSNZ makes it clear that not everyone who receives AHSCT has benefited from the treatment. “While we are aware that there are some people who have not achieved successful outcomes, there is an identifiable group of people with MS who are doing extremely well following AHSCT treatment in New Zealand and globally,” says Woodhams. “Dr Saccardi clearly highlighted the need for robust research and clear information to help clinicians, patients and regulating bodies make decisions based on the proven evidence.”
“It is important that people receive the right type of stem cell treatment,” says Woodhams. “We have concerns that some people could be put at unnecessary risk searching for a cure. We support patient choice and want to see a New Zealand treatment option based on the latest research available. In all cases, people with MS should seek qualified advice from an MS specialist neurologist about the likelihood of success before moving ahead with any treatment.”
MSNZ is aware that people with MS are raising over $100,000 dollars to personally fund overseas AHSCT treatment. New Zealand has performed AHSCT treatment for many years with cancer patients. “Going abroad presents many risks for patients,” commented Woodhams. “People are being treated in countries where:
We need to keep people safe and give them access to be best treatment options here in New Zealand where the evidence suggests they would benefit.”
Another key aspect in New Zealand is the relatively poor access to Disease Modifying Treatments (DMTs) compared with other first world countries. International studies recommend that people have tried and failed at least one, if not two, DMTs, some of which are available in NZ. “DMTs are designed to reduce or prevent relapses, yet our current system requires them to have a second relapse first before treatment is approved. Earlier access to DMTs would mean some people currently seeking HSCT would not need the treatment as there is increasing evidence of the efficacy of DMTs particularly where early access is available.” says Woodhams.
MSNZ has met with PHARMAC and made an official submission to review the entry and exit criteria for the currently available DMTs “International recommendations and research supports our request that beginning treatment earlier than currently allowed in NZ will improve long term outcomes for people with MS, preserve brain health and reduce the likelihood of irreparable damage which can be caused but further relapses.”
To view the TVNZs Sunday programme report click here.