New Zealanders living with Multiple Sclerosis are heading to Russia to receive controversial and expensive stem cell therapy in the hope it will halt the debilitating disease.
Multiple Sclerosis (MS) damages nerves in the brain and spine, leaving sufferers severely disabled.
About 4,000 Kiwis have MS and for many there is little hope of avoiding the often rapid progression of the disease.
Aucklander Donna Agnew was diagnosed with relapsing MS months after giving birth to her son and doesn't qualify for funded drug treatment in New Zealand until she experiences another attack.
"I felt completely ignored," Mrs Agnew said on TVNZ's Sunday programme.
"I felt hopeless. I was so lost in a system that I was calling out, saying 'help me, please can someone help me.' And I couldn't get anyone to return my calls."
She took matters into her own hands, turning to Google and found a treatment called stem cell therapy which has been available in Moscow for 18 years.
Mrs Agnew spoke to several Kiwis who had undergone the therapy overseas, and with the help of family and friends she was able to afford the treatment, which comes at a hefty cost of $100,000 and is not without risks.
"I'm really unlucky to have multiple sclerosis, but I'm really, really lucky to be able to access this treatment," she said.
Patients undergo chemotherapy for four days and then stem cells from their bone marrow are collected and stored. After this process, the patient's immune system is knocked out and their bone marrow stem cells are replaced.
In total, the therapy takes five weeks, with approximately nine days in isolation.
Christchurch Neurologist Deborah Mason says more studies are needed before New Zealand can offer this therapy, but the latest international data is encouraging.
"The trails would tend to indicate these treatments do halt progression," Dr Mason said.
"But the number of patients who significantly improve depends a lot on how early you're transplanted and how much disability you had prior to that transplantation," she said.
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