A year ago Canterbury man Royce Brewer could barely put one foot in front of the other.
Now the Rangiora resident is working as a landscaper and has just finished laying a cobblestone path.
Brewer has suffered from multiple sclerosis (MS) for about 20 years, but his life changed after he travelled to Russia in February for a procedure deemed “experimental” and not supported or provided for MS sufferers in New Zealand.
Gabby and Royce Brewer at their wedding in April 2014. Gabby played a big role in raising $80,000 to get Royce to Russia for treatment.
“Just little things in life that you take for granted have vastly improved,” his wife Gabby Brewer said.
“And they improve every month,” Royce Brewer added. “Something gets better. At the moment I’m really tight in all my muscles, so I’m going to see a friend who’s stretching me, trying to release everything.”
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Brewer says another issue MS patients face is finding work, but his new employer, Zac Staples, gave him an opportunity.
On Tuesday Royce Brewer received test results indicating his MS was in remission. His lesions have also begun to shrink – a rare occurrence.
A hematopoietic stem cell transplantation (HSCT) is a procedure where a person’s stem cells are removed, purified and concentrated.
Chemotherapy then completely wipes the patient’s immune system and the stem cells are returned.
The Brewers reckon if Royce had not undergone HSCT, he “would’ve been in a wheelchair by now, or [using] a walking frame”.
“The lesions … were spreading down my spine,” Royce Brewer said. “That was the next phase, was a wheelchair.”
HSCT is an option in New Zealand for the treatment of some cancers, but is, at this stage, considered too risky for MS.
Ministry of Health chief medical officer Dr Andrew Simpson said “a strong body of clinical evidence supported by New Zealand clinicians would be required” before HSCT would be considered for Kiwi MS sufferers.
Multiple Sclerosis Society of New Zealand vice president Neil Woodhams said the society advised caution for those looking into HSCT before committing to travelling overseas.
Various pharmaceutical medicines are instead the option for treating the autoimmune disease in New Zealand.
“Some people with MS are very badly affected and it seems as though [HSCT] offers less benefit for them than people who are not so badly [affected],” Woodhams said.
“Our advice to people who are contemplating it is to make sure you have very good clinical advice before you go ahead with it, because it is a procedure that has significant risks.”
Australian neurologist Dr Colin Andrews supports HSCT and practiced it in Canberra for about six years.
He said the mortality rate for HSCT had dropped to 0.3 per cent, from 1.3 per cent during the previous decade and 3 per cent before that.
Andrews said two people in Australia each week were travelling to countries like Russia and Israel each week to have the treatment as it required stricter criteria at home.
New Zealand and Australia were “just not up to date,” he said.
The Brewers raised more than $80,000 to send Royce Brewer to Russia for a month for the therapy. Successful treatment meant no more MS medication and fewer trips to his doctor.
When he arrived home, “pumped” with steroids and painkillers for the plane ride, he was near bedridden, but quickly made progress.
“It was about a month in when all of a sudden I realised I wasn’t feeding [Royce] Panadol four times every hours for his headaches, because they just had gone.
“[That] was sort of the first sign that, we were hoping, this treatment had worked.”
“I would love to see the New Zealand medical community actually getting in behind this, looking into it and understanding it,” Gabby said.