Last Month Peter Dunne announced the results of the Ministry of Health review into the guidelines that assess applications for ministerial approval to prescribe cannabis-based products.
MCANZ, and the patients we represent, find these proposed changes underwhelming, our particular points of concern being:
- lack in MC expert knowledge of persons consulted;
- reluctance of medical professionals to prescribe Medical Cannabis (MC);
- benefits of MC in palliative care misunderstood; and
- lack of funding for any MC products.
The main point of failure in the review is that the level of clinical experience in prescribing MC in New Zealand is incredibly slim, a single reputable specialist from the states may prescribe MC to more patients in 6 months than the entirety of NZ has ever had prescribed. Though the review consulted well-regarded medical professionals in New Zealand, we understand there was no or minimal consultation of medical professionals with expert knowledge and extensive experience in prescribing MC.
“Some Medical Cannabis experts in the states with less formal medical backgrounds still have a body of knowledge from first-hand experience that leaves the sum total of NZs clinical experience in the dust” says MCANZ Coordinator Shane Le Brun.
MCANZ believes that MC should not be a medicine of last resort. MC has far less toxicity than other pharmaceutical medicines commonly used. For example, Phenobarbital which is used to treat pediatric epilepsy, is highly sedating and has been implicated in causing brain damage in rare cases, and Levetiracetam (Keppra) is known to cause “Keppra Rage” in some cases, a side effect that is feared in the patient community. MCANZ feels that the use of experimental medicine like MC is preferable to invasive procedures, our patient community includes patients who have had drastic procedures such as a Hemispherectomy (surgical removal of part of the brain), to treat severe epilepsy.
If MC products are a last resort, then the medical profession and the ministry should not delay in prescribing it when lives are at risk. Earlier this year one paediatric patient was scheduled to start Sativex on the day they passed away, and last year another family was about to begin the application process the week their child passed away. MCANZ had planned to fundraise for this first child in our #MC410 campaign but unfortunately the last resort approach was “too little, too late” to help them.
One of the parents of these children who wished to remain anonymous stated “Medical Cannabis may not have helped in our case, but there is a great deal of anguish about being denied the opportunity to trial it. The responsibility for this does not lay at the hands of the Minister or the Ministry, but in the reluctance and hesitancy of our specialists to consider the option, even as a last resort”.
MCANZ finds the views expressed regarding palliative care out of touch with the realities of many patients. The review commented on dissociative effects of cannabis, which seems to apply on the rather narrow focus of hospice care in the weeks leading up to death. For many Terminal patients, MC is specifically used because it is less dissociative than other options, and is more sustainable for long term use such as the long decline fighting to prolong life expectancy in terminal cancer. Helen Kelly, a terminally ill cancer patient, finds the side effects of morphine highly dissociative. Many other MC users with chronic pain find relief with less mental effects than opiates and benzodiazepines, both classes of medicines are routinely used in palliative care and have strong links to prescription overdose.
MCANZ generally agrees with many of the concerns from the medical fraternity consulted during the internal review. In particular, MCANZ shares the frustration expressed by clinicians involved in the review process regarding Pharmac NPPA funding decisions around Sativex. Pharmac always cites lack of clinical evidence as an argument for not approving MC products, disregarding individual patient improvements which are significant enough for medical journal attention but not Pharmac approval, who have undoubtedly funded other more expensive medicines on less evidence. Patients such as Alisha Butt experienced a life-saving reduction in seizure activity on MC and another patient noted a marked improvement in tics for Tourette’s syndrome however these patients are left “high and dry” by Pharmac. “Against this brick wall to funding, specialists have on rare occasions been endorsing the use of Illicit Cannabis “Off the Record”, including some consulted by the Ministry for this review” says MCANZ Coordinator Shane Le Brun.
MCANZ feels that the way forward for future reviews should involve incorporating reputed foreign specialists from several medical specialties, such as the fields of Neurology and Anesthesiology, with significant experience dealing with MC into the review process, as MCANZ feels this would carry more weight in a review. As it stands, declining to do this already regrettably comes across to many in the patient community as a stalling tactic.
We would like to see medical professionals more open to prescribing MC products, it is reassuring to hear that it is a hot topic in the field of Neurology with regards to Epilepsy, but the lack of interest from the palliative care aspect is a cause of despair many.
Currently there are somewhere between 30-40 active prescriptions for MC in NZ, and with a population of over 4 million, that means less than 1 per 100,000 of population is accessing MC legally, and this is unlikely to be improved by the current review findings. That is the metric against which MCANZ assesses the impact of these and any future tweaks to the guidelines.
MCANZ apologizes to the patients we represent in the delay of this release. Due to Politics around Media coverage we opted to postpone this release in order to promote our patients and there extreme need firstly as part of our #MC410 campaign.