Patients are being urged to bombard health officials and regulators with their personal stories of medicinal cannabis in a bid to remind policymakers that it is everyday Australians who will pay the price of any decision to impede or limit access to the medicine.
Concern has been rising that patients will be overlooked when the Therapeutic Goods Administration starts to analyse the hundreds of submissions that have been lodged over its consultation into medicinal cannabis.
The closing date for submissions is midnight next Tuesday, October 7. The TGA said 437 had been lodged as of September 30.
To ensure patient voices are heard, a campaign is underway to collect 10,000 testimonials ahead of the deadline to illustrate the critical role that medicinal cannabis plays in people’s lives.
It is feared regulators have lost sight of patients during the consultation process.
The campaign is being led by The Patients, a body established in August by a coalition of researchers, healthcare practitioners, industry advocates and patients themselves.
Organisers have established two ways patients can contribute. One is via a personalised letter that can be written and sent via The Patients website directly to prime minister Anthony Albanese, health minister Mark Butler, shadow health minister Anne Ruston and health regulators.
“Right now, patient access to medicinal cannabis is under serious pressure… every letter strengthens the case for patient-centred policy,” The Patients stresses on its website. “Leaders across Australia’s health system must ensure agencies like the TGA and AHPRA act fairly and in the best interests of patients.
“Yet many of the most urgent problems facing this sector are not being addressed. Patients are experiencing uncertainty and extended waiting periods for their medicine.
“By emailing our leaders today, you can help ensure the people most affected, the patients, are heard.”
A second option is for patients to complete a patient benefits survey designed to capture real-world experiences of medicinal cannabis. Responses will be collated and sent to the TGA.
Clinical researcher Dr Janet Schloss, who drew up the survey, said the TGA consultation process and its questionnaire seeking feedback “clearly does not include patient voices”.
“We want to flood the TGA to show how much medicinal cannabis is required for patients,” she said. “Patient voices are imperative when you are looking at changing processes. Their experiences are important and need to be heard.
“We have created a letter to send to our leaders and a survey to collect patient experiences and benefits, which is currently missing in the consultation process. Patients need to be represented in decisions that affect their care. No other medicine is taken away from patients if they are having benefits. We can’t allow them to take this medicine away.”
Patient advocate and naturopath doctor, Rachel Phillips, said it was “simply not right” that patients feel excluded from the process.
“As a qualified naturopath, and someone who works in the global medicinal cannabis industry, I see every day how this medicine transforms lives,” she said. “The real power of this medicine is how personalised it can be, and this consultation fails to acknowledge that.
“Having a way for patients to participate during this critical period is essential. They’re at the heart of why so many of us in this industry come to work every day.”
The campaign has been backed by numerous industry players and associations, with some taking to social media to urge patients to get involved.
Medicinal Cannabis Industry Australia (MCIA) said it “strongly supports” the work of The Patients in ensuring people who receive benefits from cannabinoid medicine “are heard and respected in regulatory decision-making”.
“As an industry, we believe that government policies [on] medicinal cannabis should be shaped with direct input from those most affected – patients,” a spokesperson said. “Their lived experiences are essential to creating a regulatory framework that is not only safe and effective but also compassionate and patient centred.”