For most of Alisha Butt's life, she has suffered ongoing and severe seizures caused by a genetic disorder.
The 20-year-old has the mentality of a toddler and is unable to speak. Because of her epilepsy, she requires constant care from her parents and her doctors say she has presented a huge challenge to the medical profession.
Patients like Alisha, whose seizures do not successfully respond to anti-epileptic drugs are considered to have treatment-refractory epilepsy. Alisha has been admitted to hospital several times and suffered side effects after trialling different medications.
Nothing had worked until Sativex was prescribed in mid-September.
Sativex contains cannabidiol with tetrahydrocannabinol, or THC, the main psychoactive component of cannabis.
Pharmac is currently considering funding the drug but there are no guarantees and the family is desperate for the solution which they say could save their daughter's life.
Mother Sushila Butt said there had already been significant reductions in the severity of her daughter's seizures after using Sativex. "Our daughter is more peaceful and less agitated than before, she is also bubbly and alert and happier than what she was before."
The low dose spray will cost the family about $1000 a month - presently they have partial funding approved under a Work and Income grant for the next three months. Their first month's treatment was fully funded by a "kind and compassionate person from Kaitaia" whom Butt didn't want to name publicly.
Butt said there was no way for the family to continue the treatment after the financial help ran out and she had written to various ministers in the hope of a breakthrough. Everyone had so far said the decision for funding lay with Pharmac.
"We want the public to be aware of the effectiveness of this drug in treating a severe and disabling condition . . . and the need for the Government to change its policies. If any medication helps a vulnerable person this much, it should be available to treat that person and should be funded by the state — whatever ingredients the drug contains."
Sativex can be prescribed in New Zealand, subject to approval by the Minister of Health. Ministerial approval for pharmaceutical grade cannabis products such as Sativex is delegated to Ministry officials.
The family's doctor had made an application to Pharmac to fund the drug for Alisha under exceptional circumstances.
Pharmac's director of operations Sarah Fitt said Pharmac had sought advice on the issue of funding Sativex most recently in August. "Clinical advice is one of the first steps taken in the process of funding medicines. Consideration by the Pharmacology and Therapeutics Advisory Committee (PTAC) is the first step in assessing the funding of a new medicine."
Fitt said the committee would make recommendations on funding priorities to Pharmac and could recommend if funding for Sativex would be deferred or declined.
"A positive recommendation from PTAC does not guarantee funding of a medicine. Following PTAC's review, if a positive recommendation is made, Pharmac would then assess the relative priority of funding Sativex compared with other funding options available."
Butt said the family could only wait and hope at this point that some funding would be granted. "If funding is not available for long term, our daughter might have to discontinue treatment with Sativex. If this happens she will most likely go back to the the previous state where she will need hospitalization and most likely end up in a coma and pass away."
Ministry of Health manager of medicine control Michael Haynes said there were currently 27 active approvals for Sativex nationwide and of these, 19 patients were having prescriptions dispensed for the spray.
Sativex is primarily prescribed for the treatment of Multiple Sclerosis though it has also been used by medical specialists in several other conditions that have not been successfully controlled by more conventional therapy.