Jeremy Bester has trialled, and failed, 16 drugs over two decades.
Diagnosed with refractory epilepsy as a child, the 27-year-old has been living with severe, uncontrollable seizures ever since.
Last month Jeremy was notified by his Melbourne-based neurologist, Dr Simon Bower, that his application to the Tasmanian Government’s Controlled Access Scheme had been rejected.
The news came almost a year to the day since Jeremy’s first application was denied, on the grounds that he had not tried enough conventional treatments.
Now, his mother Lyn Cleaver says enough is enough.
“It is just a really nasty case of deja vu,” she said.
“At least now we have a firm no, and we are not waiting around hoping for a yes.
“If Jeremy was three years down the track with his illness, then maybe we would consider trying more drugs.
“But we have 20 years of history that shows the conventional drugs don’t work.
“We won’t put him through this again, and most neurologists say there is a very small chance that we will actually find a drug that will help control Jeremy’s seizures.”
Introduced on September 1 last year, the Controlled Access Scheme gives medical specialists the ability to prescribe medicinal cannabis products to patients, where conventional treatments have failed.
Patients seeking access to medicinal cannabis must first consult with their GP, who can then refer them to a relevant specialist.
If the specialist also considers an unregistered cannabinoid product is clinically appropriate, they need to apply for legal authorisation from the Department of Health and Human Services, who then prescribe the product.
Unlike other states, Tasmania’s scheme is not limited to a particular disease, with all applications reviewed by a panel of clinicians.
With a prescription, the government will subsidise the product for patients through hospital pharmacies across the state.
A Health Department spokesman said to date, seven patients had accessed “unproven cannabis products” through the scheme, but was unable to confirm how many applications had been denied.
“Applications continue to be received and assessed accordingly. Given the relatively small number of applications, it would be inappropriate to discuss these details without inadvertently identifying a patient and contravening patient confidentiality guidelines,” the spokesman said.
As of April, six applications had been approved, with a further three under consideration.
However, Jeremy has been consuming medicinal cannabis – illegally – since 2014.
After exhausting countless pharmaceutical options to help improve his quality of life, the Mount Direction family made the decision to begin accessing their own cannabis crops.
It is something Ms Cleaver says has dramatically reduced the frequency and severity of Jeremy’s seizures.
But it has not cured him.
When the Controlled Access Scheme was first announced, Ms Cleaver said she was hopeful a legal prescription would allow Jeremy to lead a more independent life, but had doubts surrounding the scheme’s “red tape”.
“Initially we knew it would only offer access to a limited scope of cannabinoid medicines, which did concern us,” she said.
“The ongoing stress of doing it illegally, it has been very difficult for our family.
“It is also mean that Jeremy is very restricted in what he can do in the community, because his carers are unable to administer his cannabis oil.
“The idea of a legal subscription would have meant a lot less pressure on our family, even if the medicine wasn’t as beneficial.”
Ms Cleaver said it would be cruel to consider making Jeremy trial any more conventional drugs.
“We already know cannabis is effective for Jeremy and while a legal script would make our lives easier, we will not force him to try more AEDs in order to be eligible,” she said.
“The Controlled Access Scheme being successful was always going to be measured by the Tasmanians who benefit.
“There are some patients who have been successful applicants and that is wonderful, but the number of legal patients in no way reflects the unregulated use of cannabis in Tasmania.
“Across the state the numbers approved on the CAS – that number is matched by at least that many turning to unregulated cannabis, daily.”
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