Alisha Butt is a young adult who is intellectually disabled due to a chromosomal abnormality, and is also plagued by a severe and life threatening form of epilepsy. Her mother Sushila Butt has exhausted all available options to treat her daughter, even getting an approval for Sativex itself suggests that Alisha was running out of options.
Initially a generous member of the public helped to fund Sativex, and there has been partial financial support from WINZ to help pay the cost for the medicine. Due to the cost of Sativex, Alisha is on only 5 sprays a day to make the Sativex stretch further due to its cost of approximately $1000 for 3 10ml bottles. Her daily dose of THC is equivalent to perhaps 5 puffs on a Cannabis cigarette, however due to the way Sativex is administered, and its other ingredients, nothing close to a “high” is achieved.
Since starting on Sativex her mother reports that the amount of seizures has reduced by about half, but more importantly the length of what seizures she has, has been reduced dramatically, the longest last a few minutes, as opposed to those that were lasting many hours and requiring hospital visits. Support worker Georgia Tait, of Mangonui, said everyone involved in Alisha’s care had noticed a difference. As well as the reduced seizures she was more alert, had regained some speech and was better able to move around on her own. The pressure on the family regarding her deteriorating epilepsy condition, has transferred to anxiety and outrage over the inability to get long term funding for what they see is a lifesaving medication that has also blunted their daughters extreme suffering.
Before Sativex Alisha’s seizures were known to last for hours, in some cases achieving “status epilepticus” where the body is in a constant state of seizure, the longest was for 20 hours. This has all come at a huge cost to the public health system. Some numbers have been provided on what the cost of Alisha’s treatment has been for September 2015 alone and are as follows.
A visit (however short) to the ED costs $465.00/visit
This excludes the costs of medicines and consumables, so potentially for one month alone the cost to the taxpayer could be in the vicinity of $5000, balanced against the cost of Sativex, at about $750 per month due to the low dose being used currently.
If Alisha goes into Status epielpticus again, a strong possibility if Sativex is discontinued, she will have to to be transferred to Whangarei Hospital with an estimated cost of over $17,000 per visit. This includes a helicopter transfer to Whangarei at approx $3600 and a minimum of 2 a day admission to Whangarei’s ICU costing approximately $6725.78/day ICU with medication.
The family have applied for one off funding from Pharmac under the NPPA funding scheme and had that declined due to a lack of evidence supporting the medicine Sativex for Epilepsy, and did not take into account the patients improvement. The DHB is also hamstrung in that they have funds available for medicines in high needs cases, however there is a rule to refuse funding for medicines where Pharmac has also refused funding.
MCaNZ respects the political independence and neutrality of Pharmac, but for the DHB, we feel it absurd that they are hamstrung and unable to fund a medicine that will likely deliver significant cost savings to the DHB and therefore the taxpayer over the long term should Sativex continue to be effective.
Out of frustration for all of these issues, Sushila has initiated a petition to fund Sativex for MS, and for Epilepsy that has not responded to conventional treatments. So far they have amassed 3200 signatures physically in the Kaitaia area, and have started an online petition at toko.org.nz to complement this.
The rule which states DHB can’t fund medicines which Pharmac has declined is only for pharmaceutical scheduled medicines which means medicines which are funded by Pharmac. Sushila has researched this and found out there is no rule or operational policy which says DHB cant fund sativex if Pharmac declined it on NPPA, as Sativex is not in the pharmaceutical schedule and this is not funded by NZ government or Pharmac so section 23 (7) of New Zealand Public Health and Disability act does not apply. There is no policy or authority which allows Pharmac to give instructions to DHBs, so the DHB can fund Sativex to Alisha or anyone who has been given approval. The DHB is only subject to direction by Minister of Health.