Alex Renton dies

Very sad to hear that Alex Renton died yesterday. Prior reports had been of improvement as he was gradually allowed to come out of a drug induced coma as cannabis oil treatment increased.

His family posted on Facebook – Support for Alex’s Journey – last night:

This evening our beautiful warrior Alex passed peacefully away. He was surrounded by his family, listening to his own music with a tummy of mums food. We thank you all from our hearts as you kept us strong during this journey. His spirit is amongst us all as he taught us so very much. We love you dear Alex (aka Ratty) xxxxxxx

Two days earlier (June 29) they had posted:

Alex is holding his own maintaining his own breathing! He shows courage, strength and fortitude as he battles towards better health. Keep prayers flowing. We are now feeding Alex our own meals with support from Hospital. This continues to be the most challenging event of our lives as a family, support around NZ is incredible, thank you xx. Rose

Stuff reports Nelson teenager Alex Renton dies despite treatment with medical cannabis.

Alex, 19, has been in hospital since April 8 in “status epilepticus”, a kind of prolonged seizure. It was not known what caused the seizures.

He had been put in an induced coma and his family petitioned the Government to allow him to be treated with a medicinal cannabidiol oil, Elixinol. They gained national support and Associate Health Minister Peter Dunne approved it to be used last month.

Alex was given his first dose of the oil on June 16, after it arrived from America.

His sedation medication treatment was reduced and he regained consciousness and his seizures stopped in that first week.

There will possibly be an inquest into Alex’s illness and death to explore the complex medical issues involved.

Dunne: find a doctor who is open to medicinal cannabis

Peter Dunne has been reported as effectively encouraging patients wanting to use medicinal cannabis to find a doctor who will consider this in their interest.

This is in Mum desperate for medicinal cannabis for her sick son:

Associate Minister of Health Peter Dunne has made it clear to GPs and the Medical Association that conservatism about using medicinal cannabis isn’t always in the best interests of their patients.

If a doctor wasn’t open to medicinal cannabis then families had the option of finding another doctor, he said.

“I’m not going to encourage or discourage that because it’s not my role, but it’s an option for them to consider.”

This looks like a carefully worded but significant statement from Dunne. This was in response to discussion about other parents wanting to try medical cannabis for their children because other drugs weren’t helping and follows the approval of the Ministry and Dunne to allow Alex Renton to be treated with Elixinol.

His family’s fight to get doctors to apply to the Ministry of Health has triggered another mother, Julie Dixon, to share her experiences battling for CBD for her son, Matthew.

The Christchurch 27-year-old has suffered from refractory epilepsy since he was aged 3 and has spent much of his life in and out of a hospital.

“We’re desperate,” Dixon said.

Matthew’s seizures are uncontrolled by medication and he too has spent time in hospital in an induced coma.

The Government allows oral treatment of a drug called Sativex, which contains cannabis extracts that include CBD and requires ministerial approval.

When Dunne approved Elixinol for Alex Renton it was the first time that particular product had been approved.

“The last time we visited the specialist we asked about Sativex and the doctor’s response was, why would you want to try that when it hasn’t been proven to work,” Dixon said.

“For us there is an absence of any other treatment options. We are regularly advised there is nothing left.”

Dixon said doctors have never discussed anything outside of conventional treatments with her and it was only when she started doing her own research she came across Sativex and Elixinol.

She and her husband, Kelvin, have written to Dunne asking for approval but without the support of Matthew’s doctor, Dunne is hamstrung by the procedure, which isn’t one he plans to change.

“At the end of the day cannabis oil is just another drug – no different from the powerful drugs being used to keep Alex comatose and the powerful drug that our son Matthew takes every day of his life, which does not control his seizures,” she said.

And Dunne seems to be following these cases and recognises the difficulties the families are having with treatments.

While Dunne said he had considerable sympathy for the families involved, “I’m not a clinician and I’m not in any position to override the clinical judgment.”

But he is open to broadening access to medicinal cannabis despite Prime Minister John Key saying he wouldn’t support a parliamentary debate on the matter.

“We are watching closely the trials that are being undertaken in Australia. Essentially if they prove to be effective we would obviously seek to take advantage of them in New Zealand.

“But the real issue beyond that is manufacturers being prepared to make those drugs available, in some cases they’re not interested because they don’t see the market as big enough.”

For it to go beyond a case by basis a manufacturer would have to apply for interim or general approval of use of their products here.

Perhaps the New Zealand market isn’t big enough – but if a manufacturer had their products approved in the New Zealand market and proved their worth here that would do a lot to help them establish wider markets.

Cannabis treatment concerns

Cannabis oil treatment has been approved for Alex Renton after having a severe seizure and a subsequent two month coma.

Cautious concerns have been expressed by experts about the cannabis product approved as it is virtually untested in this situation, and it has more of an industrial background than a medical background.

One expert says “this is uncharted territory”

The biggest concern is for Alex’swell being, and whether any cannabis oil treatment will help him. We have to hope.

It will have been an awful and very stressful time for Alex’s mother (and sister). Any mother in her position would be desperate for something to help her son. She has pushed hard for approval for alternate treatment, as nothing the hospital could do seems to have worked.

But what is going to be tried now has virtually been untested, and some concerns have been expressed about the particular product that has been chosen and approved. It’s a risk – but any new treatment would be a risk, and doing nothing would also be a major risk.

There’s been a post on this at the Science media Centre: Cannabidiol as a seizure treatment – Expert reaction where they ask:

Health authorities have approved the use of hemp derived medication Elixinol – on a one-off basis – to treat a coma patient suffering ongoing seizures. But does it work?

I don’t think anyone knows whether it will work.

The drug was approved on compassionate grounds by Associate Minister of Health Hon Peter Dunne, to be administered by clinicians treating Wellington patient Alex Renton.

The Minister said that  “despite the absence of clinical evidence supporting the efficacy of CBD in patients with Mr Renton’s condition status epilepticus, my decision relies on the dire circumstances and extreme severity of Mr Renton’s individual case”.

The Science Media Centre contacted New Zealand experts for comment.

There is a lot of interest in what is happening with Alex and whether cannabis products will help or not.

Dr John Ashton, Senior Lecturer, Department of Pharmacology and Toxicology, University of Otago, comments:

“There is some evidence that enriched CBD oil may help reduce seizures in specific kinds of hard-to-treat childhood epilepsy, but much of this evidence is anecdotal, and relies on parental reports. Controlled experiments have yet to be completed, though one product “Epidiolex” which is 98% CBD and produced by GWPharmaceuticals (who also make Sativex) is showing promising interim results in an ongoing experiment.

“However, there is no evidence that CBD can treat status epilepticus nor encephalitis, so this is uncharted territory. Also, the product Elixinol is an industrial hemp oil product, not from medicinal cannabis; hemp and medicinal cannabis are distinct variants of the same species. Elixinol only has 18-19% CBD, and contains a range of other compounds, and has not been tested in any kind of seizures under controlled conditions.”

So there is no evidence that the product, Elixinol, has had any beneficial effect for the type of seizure Alex has had. A significantly different product, Epidiolex, “is showing promising interim results in an ongoing experiment”.

Assoc Prof Michelle Glass, Head – Department of Pharmacology, University of Auckland, comments:

“The reports that we have seen in the media today strongly imply that the government has approved cannabis for the treatment of Alex Renton, it is important that people recognise that this is not the case.  What has been approved is oil made from industrial hemp, which is not marijuana, it is not a drug that will make the user experience any of the “high” generally associated with cannabis based products.  Instead, these are plants with a very high fibre content and a negligible THC content (less than 0.2%).  THC is the component of cannabis that generates a high.

“The use of high cannabidiol (CBD)  strains of cannabis or hemp have recently garnered a lot of public attention, particularly in pediatric seizure disorders such as Dravets syndrome, where there have been some dramatic results in individual patients (see the media coverage around Charlottes Web).  The strength of these individual results was such that the FDA awarded a pharmaceutical preparation of CBD – Epidiolex (from GW pharmaceuticals) orphan drug status, helping to drive the progress of clinical testing.

“These larger scale clinical trials are currently underway, and early reporting of the initial results looks very promising, with good seizure control being achieved and the drug being well tolerated, but it’s important to note that these are still in quite low numbers of patients (around 150) and a limited number of seizure disorders, meaning it is difficult to generalise at this stage.

“The compound that has been approved for Alex Renton is not Epidiolex which is a pure 98% CBD oil – but Elixinol, this is reported on the manufacturers web site to be 18% CBD hemp oil, which to the best of my knowledge has never been tested in clinical trials – however, there are some anecdotal reports of similar products proving useful in seizure disorders.  There is even a suggestion from animal studies that less pure products with a range of plant based cannabinoids in them might be preferable to a highly pure product.

“This is really a tragic case, and given that this is a compound which appears to be well tolerated, it is certainly worth a try, we can only hope in the future that there will be stronger clinical evidence as to what composition and dose of medicine is most likely to succeed.”

So the use of CBD for Alex looks like a bit of a medical punt.

And the particular product approved is also a punt.

As nothing else has worked for Alex then trying anything is probably better than nothing, as long as the risks are relatively low and that would seem to be the case here.

If Elixinol works and Alex’s condition improves that would be great, but there will be no way of knowing whether it was the best product to use or not. A different cannabinoid may have had more or less effect. There’s little way of knowing.

Epidiolexis mentioned above.

If there is no improvement then it will leave many questions unanswered. It wouldn’t prove that Elixinol was ineffective in general as it’s possible Alex’s condition is simply untreatable. And it wouldn’t prove that cannabinoids wouldn’t help Alex.

If Elixinol has no effect on Alex, or has little effect, then perhaps an alternative like Epidiolex could be tried to see if it is more effective for him.

Another product that’s been suggested is from StateWide Dosed Medicines.

This all seems like hit or miss experimentation, and that’s pretty much what it is. Nothing else has worked for Alex so there seems little to lose – CBD could have an adverse effect but so could any other treatment.

It seems to be a risk worth taking – if Alex was my son I’d want to try anything that gave me hope of success.

I hope that the medical advice behind the decision to try Elixinol is sound – there are criticisms of this product online.

And I hope Alex gets better. It would be a major for him and his family, obviously. It would also be significant in the use of CBD as a treatment for seizures.