Letter to the Editor, Thursday October 1, 2015

It works

We are writing to you regarding Sativex (cannabis oil, or medicinal marijuana) for the treatment of refractory epilepsy for our daughter, who used to have hundreds of prolonged, severe seizures every day.

Since September 16 our daughter started prescribed Sativex. It is only two weeks and we have seen significant improvements of the severity of her seizures. She is still having several seizures, but small ones lasting for seconds to minutes rather than several minutes to hours. The last seizure when she was hospitalised before Sativex was introduced, it took the hospital 20 hours before her seizures were controlled.

At the moment she is on low dose of Sativex.

In New Zealand Sativex is approved for use as an add-on treatment for symptom improvement in patients with moderate to severe spasticity due to multiple sclerosis who have not responded adequately to other anti-spasticity medication.

We have got approval from team leader medicine control, under the authority delegated by the Director-General of Health and with the Crown consent of the Minister of Health in New Zealand to use Sativex on our daughter to treat refractory seizures.

As Sativex is expensive, and Pharmac doesn't fund this medication, it can cost a patient $1000-plus per month, depending on the dose. We made an application to Pharmac under exceptional circumstances, called Named Patient Pharmaceutical Assessment (NPPA), and it was declined. Reason given was there is not enough evidence that Sativex will treat seizures for our daughter, and the other reason, if Pharmac approve our daughter to fund Sativex then they have to approve other patients with refractory seizures if they apply.

The Minister of Health and Minister of Social Development doesn't want to do anything, as policy is more important to them than a life.

We have written to all Ministers of the Labour Party including Kelvin Davis, most Ministers of the National Party, Winston Peters and Barbara Stewart.

The only person helpful was Barbara Stewart, but we feel she was given the run-around by the National Party ministers.

If funding is not available and our daughter has to discontinue treatment with Sativex she will most likely go to the previous state where she will be need hospitalisation, and most likely end up in a coma and pass away .

We would like the public to be aware that its time that changes to policies need to be made by ministers. And if any medication helps a vulnerable person, that should be allowed to treat that person and should be funded by the state, whatever ingredients the drug contains.

It is time the government accepts responsibility for the vulnerable and sick and disabled rather than wasting money on a flag, bringing a couple of pandas from China, giving gifts to diplomats from other countries and wasting money on luxury cars and motels and travel on taxpayers' money.

SUSHILA AND ROYD BUTT
Kaitaia