A Brisbane man wants a public inquest into the death of his nine-year-old daughter, saying she died prematurely because she was repeatedly denied access to medicinal cannabis.
Steve Peek’s daughter Suli had a complex neurological disorder and cerebral palsy.
She could communicate only by blinking her eyes.
Her condition resulted in life-threatening seizures, sometimes 200 times a day.
She was on epilepsy medication, but Mr Peek said it was largely ineffective and had horrendous side-effects, while the seizures continued.
“It’s terrible, heartbreaking,” he said.
In May 2015, after Suli suffered bleeding stomach ulcers, Steve and his wife Joyce knew they had to try something else.
“She wasn’t in a very good place so we gave her the first dose of cannabis oil and within half an hour we saw an immediate, and I mean immediate, change,” Mr Peek said.
He said Suli’s seizures dropped by 90 per cent and they weaned her off the epilepsy medication.
“She didn’t go to hospital for epilepsy for over a year,” Mr Peek said.
“She was meeting all of her goals for the first time at school.”
Medicinal cannabis was not legal in Queensland then, but Mr Peek continued giving it to her.
Suli’s GP Dr Roger Egerton also noticed the difference.
“I got the impression that she was enjoying a better quality of life,” he said.
“Generally, she seemed more comfortable, more responsive, generally more alert.
“I think it’s likely that the medicinal cannabis reduced the frequency and severity of her seizures.”
Just over a year ago, new laws were passed to allow GPs to apply to Queensland Health for permission to prescribe medicinal cannabis, providing they had the support and advice of a relevant specialist.
Certain specialists such as oncologists, and paediatric neurologists could prescribe it without approval.
Suli’s GP Dr Egerton was willing to apply, but no specialist would agree.
“I think the medical profession generally is cautious about prescribing medicinal cannabis, for good reason,” Dr Egerton said.
“It’s a medication that hasn’t got approval from the TGA [Therapeutic Goods Administration].”
He said regulations and red tape also made applying for it a “complicated, onerous and time-consuming process”.
“It would be helpful for specialists to be prepared to prescribe for carefully selected patients, and I certainly think more clinical trials are necessary to establish safety and efficacy of cannabis products.”
Mr Peek said he believed specialists were reluctant because Queensland Health had issued clinical guidance urging caution when prescribing medicinal cannabis containing the compound THC.
The guidelines state THC products are not recommended for patients under 25.
Mr Peek said he was giving Suli an unregulated type of medicinal cannabis which was closely related to THC, but did not produce the cannabis high.
While Suli’s epilepsy improved, she was admitted to the Lady Cilento Children’s Hospital in June 2016 with complications.
Initially staff turned a blind eye and he was able to continue giving her the medicinal cannabis, but that stopped weeks later when a staff member threatened to call the police.
Although Mr Peek continued to give his daughter the treatment at home, he was no longer able to administer the cannabis oil when she was in hospital.
“I pleaded with them at one stage: ‘Please, please prescribe it. There’s nothing left for you to do for her, why can’t you prescribe it?’,” Mr Peek said.
The hospital offered Suli a different type of medicinal cannabis known as Epidiolex.
But Mr Peek said they declined because he feared it would be less effective, and required a “washout” period of one month before using it.
This meant Suli would be off all medication — a risk her family deemed too dangerous.
Lawyer Teresa Nicoletti, who is working pro-bono for the family, said she believed the hospital was blocking access to medicinal cannabis.
“That washout period … would have put [Suli’s] life at risk,” she said.
“For the parents, no, it wasn’t an option, and would any parent consider that to be an acceptable option?”
Ms Nicoletti has written to Federal Health Minister Greg Hunt concerned at the “systematic and profound failure” of the regulatory framework to supply medicinal cannabis.
“The complexities of lawful access to medicinal cannabis in Australia remain nothing short of prohibitive,” she stated.
She said the state and territory regimes “effectively neutered” the Commonwealth approval and unnecessarily duplicated federal schemes, doubling regulation and “maximising the hurdles” that patients and their prescribers needed to overcome to access medicinal cannabis.
“We have tried to assist not just the Peek family but other families in Queensland, and they are facing the same issues of having their access blocked,” she told the ABC.
In a statement, a Queensland Health spokesman said the department had an obligation to ensure medicinal cannabis was provided in a safe and appropriate way.
“The introduction of medicinal cannabis is still relatively new in Australia and state and Commonwealth departments continue to work together to streamline access to medicinal cannabis for patients,” he stated.
Children’s Health Queensland (CHQ) medical services executive director Andrew Hallahan said the organisation supported the prescription of legal medicinal cannabis where paediatric specialists judged it to benefit the patient.
“Illicit cannabis preparations are known to be highly variable and often have high levels of psychoactive THC which is unsafe for children and young people,” Dr Hallahan said in a statement.
“The use of illegal cannabis is not supported by CHQ as it is contrary to state and federal law.”
Suli Peek was admitted to the Lady Cilento Children’s Hospital one last time in October 2017.
She had been having stomach problems, and died suddenly.
The cause of death is unknown and the coroner is investigating.
A Queensland Health spokesman said the department had done everything in its power to achieve the best possible outcome for Suli.
“We offer our sincere condolences to Mr Peek and his family,” he said.
But the Peek family wants a public inquest to look into procedures in the hospital.
“The fact is one week they let us give it to her and turned a blind eye, and three weeks later they say no … so there’s this big inconsistency,” Mr Peek said.
He said it was particularly frustrating no specialist would prescribe the THC drug because of concerns about long-term effects on the brain, when Suli had a regressive brain disorder and faced a limited life expectancy.
“I think they failed her,” he said.
“We knew [Suli’s death] was inevitable one day, but it was premature, and we honestly believe that the refusal for Suli to be prescribed the cannabis product we wanted contributed to her premature death.”
2. BuzzFeed News: This Professor Wrote There Was No Evidence For Using Cannabinoids For Pain. Then He Said The Opposite
By Brad Esposito
They had a reply from an RACP spokesperson who stated that there was evidence that cannabis might be effective in the treatment of neuropathic pain, which is not what they wrote in their article as far as I recall. Will check tomorrow.
This is a problem for opponents of medicinal cannabis.
They either don’t REALLY know the literature, or they do, and they’re prepared to lie about it anyway, in the hope that no one will catch on.
Either option should rather disqualify them from the playing field, you’d think
In February, authorities on both sides of the medicinal cannabis debate argued over an opinion piece from the RACP that declared usual medical research standards had not been met when it came to cannabinoids.
“Recent systematic reviews and meta-analyses of the evidence for the effectiveness of cannabinoids for analgesia show no benefit over placebo in pain reduction and that significantly more patients experience adverse events,” read the article.
The piece was called “scaremongering” by University of Sydney professor Iain McGregor, who wrote a response in the Sydney Morning Herald rejecting many of the claims.
When asked how Reynolds could state on ABC News that there was evidence that cannabinoids could be used in the treatment of neuropathic pain when the article written in the medical journal stated the opposite, a RACP spokesperson told BuzzFeed News there was “no contradiction”.
“Adrian was quoting from TGA guidance documents in relation to neuropathic pain and this explanation isn’t captured in the quote that was used in the story or the excerpt you’ve provided,“ said the spokesperson.
However, while it is correct that the TGA’s guidance documents do say there is evidence for the use of cannabinoids in the treatment of neuropathic pain, this was not written in the position statement published by the RACP in The Medical Journal of Australia.
When asked if this meant the RACP was saying the TGA guidance documents are incorrect, the spokesperson said the RACP had “nothing further to add”.
3. MedicalXpress: Medicinal cannabis is safe and effective—it’s time to reboot research
Medicinal cannabis is safe and effective in pain relief, and researchers are calling for the treatment to be properly established in our modern medical arsenal.
A new special issue of the European Journal of Internal Medicine provides a comprehensive overview of current evidence for the use of cannabis and derived products in medicine, and calls for more research to improve the evidence base for its use.
“We feel it is absolutely imperative to not only present the current state of affairs, but also propose the development of the scientific research program within the paradigm of evidence-based medicine,” said Prof. Victor Novack, guest editor of the special issue and a professor at Ben-Gurion University of the Negev in Israel. “Our ultimate aim should be to scientifically establish the actual place of medical cannabis derived products in the modern medical arsenal.”
Cannabis has been used for centuries in pain relief, as a sleep aid and for many other purposes, yet there is little evidence on its safety and effectiveness.
This is in part due to relatively recent legal restrictions on its use, which have hampered research efforts and resulted in doctors having little to no understanding of its use.
However, there has been an explosion in the number of studies published since 2012.
The new special issue provides two major studies on the use of cannabis in cancer patients and the elderly, as well as a comprehensive overview of the evidence, regulations, ethics and practical use.
The authors and editors call for more research to improve the evidence base.
In a study led by Prof. Novack, a team of researchers from Israel analyzed data collected during the medicinal cannabis treatment of 2,970 cancer patients between 2015 and 2017.
The two main problems patients were hoping to overcome were sleep problems and pain, and cannabis has been shown to be effective in alleviating both.
95.9 percent of the patients reported an improvement in their condition.
The same team also analyzed the effectiveness of medical cannabis in elderly patients who were being treated in 2015-2017 for a variety of issues, including pain and cancer.
The researchers conclude in their paper:
“Our study finds that the therapeutic use of cannabis is safe and efficacious in the elderly population. Cannabis use may decrease the use of other prescription medicines, including opioids.
Gathering more evidence-based data, including data from double-blind randomized-controlled trials, in this special population is imperative.”
In a review in the special issue, Prof. Donald Abrams at University of California San Francisco Ward in the US covers the recent review conducted by the National Academies of Sciences, Engineering and Medicine, The Health Effects of Cannabis and Cannabinoids.
The report, which considered 10,000 scientific abstracts, “concluded that there was conclusive or substantial evidence that Cannabis or cannabinoids are effective for the treatment of pain in adults; chemotherapy-induced nausea and vomiting and spasticity associated with multiple sclerosis.”
Yet the report also highlighted the barriers to research in the US, which may explain the lack of strong evidence for the therapeutic use of cannabis.
This dearth of research has also led to numerous ethical issues in prescribing cannabis, not least because many doctors do not understand the treatment enough to advise dosage and use.
An article by researchers at the University of British Columbia, Canada and International Cannabis and Cannabinoids Institute, Prague, Czech Republic provides practical guidance for doctors, with data on cannabis pharmacology.
“This Medical Cannabis special issue covers everything you wanted to know about medical cannabis,” said Prof. Novack.
“We hope that it will provide physicians with a contemporary summary of different aspects related to the medical cannabis and guide the choice of an appropriate for the indications where the evidence is sufficient to initiate the treatment. We also hope the articles will facilitate the conversation on the future of medical cannabis research and its accommodation into mainstream medicine.”
More information: Lihi Bar-Lev Schleider et al, Prospective analysis of safety and efficacy of medical cannabis in large unselected population of patients with cancer, European Journal of Internal Medicine (2018). DOI: 10.1016/j.ejim.2018.01.023
Donald I. Abrams. The therapeutic effects of Cannabis and cannabinoids: An update from the National Academies of Sciences, Engineering and Medicine report, European Journal of Internal Medicine (2018). DOI: 10.1016/j.ejim.2018.01.003
Caroline A. MacCallum et al. Practical considerations in medical cannabis administration and dosing, European Journal of Internal Medicine (2018). DOI: 10.1016/j.ejim.2018.01.004