A family which has begun dipping into its retirement savings to pay for their son's medical cannabis treatment has made an emotional plea to Government to make the drug more affordable and accessible.
Ollie Venables, 22, is autistic, intellectually disabled, and has mild spastic cerebral palsy. He is in near-constant pain and suffered from muscle spasms and other side effects while on previous medications.
His parents, Shelly and Brett Venables, are among a small group of New Zealanders who have successfully navigated the fraught process to obtaining one of the two legal cannabis medications on the market, a CBD oil made by Tilray.
But the Invercargill family say they have had to begin spending their Kiwisaver – which can be accessed on hardship grounds - to pay for the medication.
They are among hundreds of families who are lobbying Parliament on a law change which will decriminalise medical cannabis for some people. Most of those families say it does not go far enough. The Health Committee is now working on its report, which is due back at the end of July.
The law change before Parliament will eventually make medical cannabis more readily available and could reduce its cost, though the new regime is expected to take at least two years to implement.
In the meantime, there will be a legal exemption from prosecution for terminally ill people who have illicit cannabis.
Shelly Venables wants the ability to be able to grow or purchase other forms of medical cannabis legally. But because Ollie is not terminally ill, he or his family will not be exempt from prosecution.
Health Minister David Clark has already ruled out broadening the legal exemption, saying it was intended to be a compassionate measure until the full regime was in place.
Shelly said she was not willing to break the law to provide pain relief for her son.
"We are trying to raise law-abiding citizens. And it just seems so hard. The law is too harsh. It's really too harsh."
She felt so strongly about the issue that she travelled to Wellington last month so she could "look MPs in the eye" when she told her story. The trip cost the equivalent of two weeks' of pain relief for Ollie, she said.
The family pays a discounted rate of between $500-$600 for the medicine because of a sympathetic pharmacist, and the bottle of oil lasts two weeks.
Shelly and Brett are already in debt because they quit full-time work to care for Ollie rather than commit him to psychiatric care. He was so traumatised by a stint in Dunedin's Wakari Hospital four years ago that he did not speak a word for nine months.
They sought out a cannabis-based medication after Ollie became increasingly erratic and lethargic as a result of his various anti-psychotic drugs.
In one instance, he was hospitalised after cutting his head open on a kitchen bench. At the worst period, he slept for just eight or nine hours in a fortnight.
That changed when he got a cannabis oil prescription, Venables said.
"Within 10 minutes of taking it all the leg tremors and everything would just stop. He'd just lie back in the chair, cross his feet and fold his arms and then just start chatting.
"It was just profound, really, after years of agony and torture and there he was. Just talking to us.
"That first two weeks, that first bottle, I think our jaw was on the ground more than it wasn't. We were just so blown away with seeing Ollie back for the first time in so long."