Chance treatment worth its weight

Hamish Bockett-Smith has loaded his mortgage to afford the $200,000 treatment for MS which is only available in New Zealand for cancer patients. Photo / Mark Mitchell

Wellington man has to go to Singapore for therapy cancer patients get in New Zealand.

Hamish Bockett-Smith is about to spend 12 weeks in Singapore undergoing a gruelling stem cell transplant procedure in an attempt to halt the steady destruction multiple sclerosis is inflicting on his body.

The treatment and trip will cost the 40-year-old Wellington man about $200,000, but he says that the resulting quality of life will be worth it.

Patients with the condition cannot get the treatment in New Zealand.

In 2001, Mr Bockett-Smith, then 27 and living in the United Kingdom, lost feeling in his right arm and hand.

It was diagnosed as a pinched nerve and painkillers were recommended. The numbing continued, but the diagnosis remained stubbornly the same.

Six months later, while Mr Bockett-Smith was back in New Zealand for Christmas, he saw his family doctor, who ordered an emergency MRI scan.

On Boxing Day, he was finally given the correct diagnosis of white matter present on his brain, which meant MS.

Since then, the IT expert has suffered symptoms such as temporary blindness and agonising pains in his feet. He has never regained feeling in his arm.

At the end of next month, Mr Bockett-Smith will leave his wife and two children, aged 8 and 4, to undergo a three-month hematopoietic stem cell transplant in a private hospital in Singapore.

The treatment is available here, but only for cancer patients, not for people with MS, he said.

"It's something cancer patients get every day, in every country in the world ... including here."

The cost is being met by a top-up on his mortgage, help from family and a Givealittle page some friends set up.

"It's tough, but we think it's worthwhile," he said. "Because not doing it, I know where it's going to go, and it will probably put me in a wheelchair at some stage."

Last year, the drug-buying agency Pharmac announced that it would fully fund two treatments, which previously cost up to $30,000 a year.

However, Mr Bockett-Smith is unable to take advantage of the medication because his condition has progressed to a point where the drugs don't help any more.

The medical sector in New Zealand was cautious in treating MS patients, he said.

"From a drugs point of view there are some really good drugs out there, but they take a long time to get to New Zealand."

Those drugs not only had an impact on the quality of life of people with MS, but would also ease the financial burden on the health system, he said.

MS Society of New Zealand vice-president Neil Woodhams said others from New Zealand and Australia had travelled overseas to get the treatment.

Patients would mostly travel to Russia and Canada for the treatment.

Auckland MS Society chief executive Therese Russel said she had heard of some remarkable results from people who had undergone the treatment, but it was still unknown how long those results would last.

"But I know the people who have done it swear by it.

"It's a very expensive process and not offered in New Zealand, so they have to go out of the country."

Associate Professor Bronwen Connor from Auckland University's centre for brain research said there had been some clinical trials of the stem cell treatment in New Zealand for MS patients, but so far it had not been approved by the US Food and Drug Administration.

The treatment appeared to be reasonably effective for people with progressive MS, she said.

However, some international trials showed the symptoms could recur over time and there were also some deaths associated with the treatment that were "higher than would be acceptable for clinical practice".

Professor Connor said the treatment was consistent with that for patients needing bone marrow transplant procedures, but it appeared people with that condition reacted differently to the treatment to those with MS.

"[But] the fact that it has gone into clinical trials is positive," she said.

The Health Ministry's cancer programme national clinical director, Andrew Simpson, said stem cell transplants were performed in New Zealand for some conditions.

"However, multiple sclerosis is a complex condition, and the use of this technique for these patients is not currently available in New Zealand," Dr Simpson said.

"One option for people requiring medical treatment that is only available outside New Zealand, or treatment that is only currently available outside the public health system, is to make an application to the ministry's special high cost treatment pool."

The eligibility criteria state that the treatment has proven efficacy, and be a well-established form of treatment, among other requirements.

About 20 to 30 applications for the high-cost treatment pool are approved every year.

MS: a painful disease

What is multiple sclerosis?
MS is a disorder of the central nervous system (CNS) which includes the brain, spinal cord and optic nerves. The CNS is attacked by the patient's own immune system.

What are the symptoms?
In severe cases the patient becomes paralysed and sometimes blind, while in milder cases there may be numbness in the limbs.

Who is afflicted and when do symptoms appear?
Symptoms usually appear at first between 15 and 45 years of age. Women are twice as likely to get MS than men.

How does stem cell transplant treatment work?
Stem cells are extracted from the patient and stored. The patient then undergoes chemotherapy treatment, which destroys the immune system that was attacking the CNS. The stored stem cells are then transferred back into the patient's body where, over the course of several weeks, they rebuild the immune system.