Legal, but at a huge cost for the patients

Sativex has been helping patients, but cost is a barrier. Photo/NZME

Just half a dozen Bay of Plenty people have applied to use medicinal cannabis over the past three years and users around the country say the high cost is a barrier to accessing the drug.

Ministry of Health figures show it authorised all six Bay of Plenty applications for the pharmaceutical grade product Sativex.

Earlier in the year the Bay of Plenty Times Weekend told the story of Tauranga man Adam Belcher who became the first New Zealander with Tourettes to be allowed to use the medicinal cannabis spray Sativex. The breakthrough treatment was so successful that the man who the Tourette's Association dubbed the worst case it had ever seen, told the paper he was enjoying a huge lift in the quality of his life.

"I'm happy to be the guinea pig ... no more is every day a battle and everything a challenge.

"All my friends and family can't get over the difference, it's a miracle drug for me."

He estimated that life's difficulties from living with Tourette Syndrome had been reduced by two-thirds. Going out in public was no longer a torment of embarrassment caused by his involuntary uttering of swear words and stomping. But paying for the drug, which costs $1100 per prescription, had become an issue forcing him to fundraise.

He paid for two prescriptions out of his own pocket and a third thanks to an anonymous donor. He started a Givealittle page to raise money for further prescriptions. As at yesterday $2825 had been donated. Last week Associate Health Minister Peter Dunne approved the use of another cannabis-based product to treat Mr Belcher.

Mr Belcher's doctor applied for approval to trial Aceso Calm spray, a non-pharmaceutical grade product with a low THC content. Mr Belcher said it was too early to talk about the drug.

Northland woman Alisha Butt has been using Sativex since September to control severe epilepsy and recently became the first person in the country to receive publicly-funded medical cannabis.

Her parents, Sushila and Royd Butt, believed a lack of funding for the drug was preventing people in the community applying to use it.

The Northland District Health Board (DHB) is funding the medication for Alisha for as long as it is needed and remains effective. The family had sought funding from the government's drug-buying agency Pharmac but were refused on the grounds there was not enough evidence it was effective for epilepsy.

Mrs Butt said it should be Pharmac's responsibility to fund the drug rather than the DHB.

She said the couple wanted the drug funded for everyone who needed it and had organised a petition urging the Government to do so, which received 6125 signatures.

A Carterton family turned to the public to help fund the drug after teen Grace Yeats was left unable to move, sit, eat or talk when she returned from school with a headache and sore throat in May 2012, when she was 10-years-old.

Within a year she became the first New Zealander to be diagnosed with an incurable variant of acute disseminated encephalomyelitis.

Her mother Tracy Yeats said Sativex had been "life-changing" for Grace. She was in a great deal of pain and having a lot of dystonic spasms before she started using it. Now she was calmer, using her hands more and was overcoming her spasms. Late in February she started talking again.

Mrs Yeats said the drug wasn't something she could afford without public help.

Nationwide, the Ministry of Health has received 76 applications for pharmaceutical grade cannabis products with consent for distribution in New Zealand over the past three years.

Sativex is approved for treating symptoms of multiple sclerosis in New Zealand. Any other use of Sativex is an 'unapproved' use, according to Medsafe.

The ministry approved 73 of the applications including 16 applications for renewal of previously granted approvals. NZME