Access to medical cannabis now a burning issue for MS and epilepsy patients


By Michael Woodhead

25 Feb 2020

Patient groups representing people with MS and epilepsy say their attitudes to medicinal cannabis have shifted from sceptical to positive in recent times and they are now lobbying for better and cheaper access to regulated products.

Speaking at a Senate inquiry into barriers to patient access to medicinal cannabis in Australia, groups such as MS Australia and Epilepsy Action Australia said that the key issues now are the high cost of medicinal cannabis products and the reluctance of some doctors to prescribe them.

Mr Andrew Giles, national policy officer for MS Australia, said feedback from patients on  medical cannabis was positive, even from those who were conservative, risk averse and initially reluctant to use a product they viewed as ‘wacky’ and illicit.

Patients who had experienced unacceptable side effects with products such as baclofen and gabapentin were reporting good results with medicinal cannabis products on spasticity, leg kicking and burning pain – as well as continence, Mr Giles told the inquiry.

“In the MS community it’s a hot topic.  … None of the conversations that we’ve been privy to at MS Australia or amongst the people I talk to are negative about medicinal cannabis,” he said.

“All the peer support group conversations that I’ve been privy to and the social media chatter are all about the positive benefits, along with frustrations to do with access and cost.”

Mr Giles estimated that about half of the 26,000 patients with MS in Australia had used medical cannabis, but many felt the benefits were ignored or downplayed by neurologists who they “see once a year for 10 minutes for industrial strength disease-modifying therapies”.

He gave an example of “not having to get up at night 10 times to pee” which might seem like a small thing to some, but was very important measure of quality of life for people with MS.

“If they can get some relief from symptoms with something that, in their perception, isn’t toxic in the way that the other medicines are, which they go to hospital to have infusions for, like chemotherapy and like drugs, they are very keen for them,” he said

However he said the licensed medicinal cannabis product for spasticity in multiple sclerosis, Sativex, cost patients about $800 a month, so there was strong push to the have it subsidised on the PBS, with a PBAC meeting to consider a listing application this month.

People with epilepsy faced similar barriers of high cost and doctor reluctance to accessing medical cannabis, according to Carol Ireland CEO of Epilepsy Action Australia.

“As an organisation, our position has evolved from being extremely conservative, back in 2014 when patients first approached us, to being cautiously open-minded,” she said

She described the case of a 17 year old boy who’d had extremely good results with seizure control using a cannabinoid product accessed through Sydney Children’s Hospital, but now faced costs of up to $1300 a month as he transitions to adult services.

Faced with high costs and red tape of obtaining medical cannabis products via the Special Access Scheme, (SAS) Ms Ireland estimated that 80% of people she spoke to were accessing cannabis tinctures and oils illicitly.

Ms Ireland said the reluctance of GPs and neurologists to prescribe medical cannabis had led to the growth of telehealth clinics that charge $200-$300 for a phone or online consultation to arrange rapid access to medicinal cannabis via the SAS.

“There are quite a lot of them now. They’re typically GPs. Some charge a fee, some don’t. Some of the fees are very high. They do try to liaise with the treating doctor,” she told the inquiry.

AMA president Dr Tony Bartone told the inquiry that many GPs felt frustrated by the lack of information on cannabis prescribing and the red tape barriers to prescribing it.

“It seems to us that what has happened here is that the government has jumped the gun with medicinal cannabis. The public have an expectation, or have been led to believe, that medicinal cannabis is now available and patients can go to any clinic or any doctor and it will be prescribed,” he said.

“Anecdotally, we have frustrations amongst GPs that they’re not being sufficiently informed about what cannabis products are available and for what conditions.

“[GPs said] one of the biggest barriers to accessing medicinal cannabis treatment options for patients is the current regulatory barriers, which included the complexity, time and paperwork involved in prescribing, the cost of medicinal cannabis, and doctors not being informed to the point of being confident enough to prescribe.

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