Medical Cannabis Is So Expensive, This Mum Might 'End Up On The Street'

Marina Spence is paying $533 every six days for her daughter's medicine

What you need to know
  • The only product that works for Marina's daughter comes from Canada
  • It is not on the PBS and comes at a high cost
  • Mikayla's condition has vastly improved after using the CBD oil
  • "I don't know how I will afford this"
"I don't know how I will afford this."

Perth mother Marina Spence should be overjoyed.

After years of unfruitful searching for a medication to soothe her 13-year-old daughter Mikayla's severe seizures, she has finally found a product that works. Mikayla's seizures have been drastically reduced, her neurological irritability has vastly subsided, and the family have been able to enjoy the type of regular outings many of us take for granted, such as a simple trip to the local cafe.

But at $533 a bottle, which lasts just six days, Spence says she doesn't know how she will find a way to continue refilling her daughter's prescription.

Mikayla was born with a very rare and complex neurological condition. Her medication is an oil infused with cannabidiol, or CBD, a non-psychoactive component of cannabis. And it is horrendously expensive.

" I cant take it away from her," Spence told ten daily. When asked how she would continue to afford the weekly refill, she laughed humourlessly, perhaps desperately.

"I don't know. Maybe we’ll end up on the street."

Mikayla is 13. She uses a wheelchair and is non-verbal. Her condition, in addition to causing multiple violent seizures a day, makes her sensitive to light, sound and other stimulation, making it nearly impossible for her to even watch television or read a book.

"She has seizures every day of her life. She also has neurological irritability, which is like sensory overload. She's constantly having cycles of seizures and irritability that affect every part of her life. She can cycle from seizure to screaming to seizure to screaming," Spence said.

Marina and Mikayla, in an older photo

Since birth, Spence has tried "every possible medication we could get in Australia" to lessen Mikayla's symptoms, to no avail. She tried to source medications from overseas, sought permission for medications not normally used for children, and, in desperation, even tried to access medical cannabis through private markets.

"I tried to get it through channels that weren’t legal, as many parents would. We’ve tried many mixes," Spence said.

It wasn't until earlier this year, when she was given special permission from the federal government and the Therapeutic Goods Administration to access CBD oil from a Canadian company, that Spence and Mikayla seemingly found their panacea. The oil is infused with cannabidiol or CBD, as opposed to tetrahydrocannabinol or THC, the ingredient that gives a 'high' to users of marijuana. Mikayla's CBD oil contains zero THC.

Two drops of oil, twice a day, has elicited a remarkable change in her daughter's condition.

"We’ve gone from her cycling through seizures and irritability, to significantly reduced seizures. The irritability has been addressed. She’s calm, happy and interested in engaging in the world, instead of shutting in her room with peace and quiet. She can read books and watch bits of TV," Spence said.

"When she’s in a difficult state, she can't use her tools to communicate. This has opened her up, given her more clarity and helped her use her tools. That’s a big one. We can't go to a cafe for coffee, we can't go out for dinner, we can't even open Christmas presents on Christmas day. Every day been significantly limited, but the change in the last four weeks has been significant."

REUTERS/Rick Wilking
A tiny bottle with a big price tag

A 25 millilitre bottle of oil costs Spence $533 at her local pharmacy, after the pharmacy sources the product specially from the Canadian company. Two drops administered twice a day means one bottle lasts Mikayla around six days. ten daily understands the product is still around AUD$450 in Canada, due to a high degree of processing needed to extract the CBD from the cannabis plant, but there is still a huge markup for Australian consumers.

"There was a guy talking on the radio recently, he was saying it’s low demand in Australia so the cost goes up and because only certain companies manufacture it, it's a monopoly and all that," Spence said.

She was blown away when she saw the price tag on the tiny bottle.

The 25mL bottle that costs Spence $533 every few days

"It took several months to receive approval [from the TGA]. Mikayla's neurologist did infer it would be expensive, but I didn't have any idea of how expensive until I put the script into the pharmacy and was committed to buying it," she told Perth's 6PR radio last month.

No medical cannabis products are eligible for government subsidies

The product is not listed on the Pharmaceutical Benefits Scheme, which contributes to its high price. A spokeswoman for the federal Department of Health told ten daily that only one medical cannabis product, called Sativex, is registered with the TGA. However, it is not yet available on the PBS, meaning zero medical cannabis products are eligible to be subsidised by the government.

"By law the Australian Government cannot list a new medicine on the PBS unless the Pharmaceutical Benefits Advisory Committee has made a recommendation in favour of the listing," the spokeswoman said.

"The PBAC meets regularly in March, July and November to consider medicines proposed for listing and would welcome another submission for Sativex at any time."

The spokeswoman also noted the work the government had done in recent times to remove barriers to access medical cannabis products, including simplifying pathways for doctors to prescribe treatments and for prospective patients to gain special access to other products.

"Following the COAG Health Council meeting recently the Federal Minister for Health initiated that the TGA work with the states and territories to implement a single national online application pathway to access unregistered medicinal cannabis products through the Special Access Scheme," the spokeswoman said.

"Already the NSW/TGA trial of a single paper form is informing this development and is working well. This trial is enabling medical practitioners to obtain Special Access Scheme approvals from TGA and Schedule 8 approvals from NSW within 48 hours once the required information is provided.

"The Commonwealth has also legislated to allow for domestic cultivation, manufacturing and importation of medicinal cannabis."

'Maybe we'll end up on the street'

Spence told ten daily she wasn't sure how her family would deal with the astronomical cost of the medication.

"I don't know how I will afford this. I’m torn. I was almost hoping it didn't work so we didn't have to face this dilemma, but of course I wanted it to work because it gives her a life worth living," she said.

"I can't take it away from her. Maybe we’ll end up on the street."