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
