Last week prominent medical cannabis campaigner Charlotte Caldwell launched the #iambilly campaign. Grow Pharma are delighted to be a key partner of the campaign with Patient Access Lead Alex Fraser taking a role on its Policy Advisory Board. Iambilly hosted a press conference on Thursday 13th May releasing details of the campaign. It can be viewed in full here.
The press conference featured patients from the UK and Channel Islands who gave detailed accounts of their experiences of medical cannabis and the current systems for access. Also present were Welsh Rugby Union player Dominic Day and Conservative MP Heather Wheeler. Heather made it clear that she had already initiated conversations with Sajid Javid and Matt Hancock. Charlotte, with Billy alongside her, gave an impassioned statement about the campaign and its intentions.
The campaign aims to secure funding for a real-world-evidence study to establish safety and efficacy of cannabis medicines, with the ultimate objective of making them available via the NHS. The campaign also plans to set-up a non-profit medical cannabis clinic.
Charlotte, mother of epilepsy patient Billy, was at the centre of the hugely successful campaigns that lead to the rescheduling of cannabis medicines in the UK in November 2018. The law change allowed for private prescriptions for a wide variety of cannabis medicines to be written for patients with many debilitating symptoms and conditions. Grow Pharma facilitated the first bulk import of these medicines in February 2019.
Despite the welcome progress made by campaigners like Charlotte and the hard work of the nascent medical cannabis industry in reducing costs and increasing accessibility to cannabis medicines, Billy remains one of a literal handful of patients who have received NHS funding for their life-saving medicine. Meanwhile the number of prescriptions written via private clinics is increasing steadily as more patients and doctors discover the benefits of cannabis medicines.
When discussing NHS access a lot of attention seems to focus on the cost of cannabis medicines for certain diseases. This has definitely created a misconception with the public and with prescribers about the cost for these medicines. They vary greatly between indications and have also come down significantly over the last two years. More importantly, the discussion should first and foremost be about safety and efficacy of these medications. Healthcare always comes at a cost, what needs to be established is whether that cost is worth it and that is where the call for creating real world evidence comes in. Developing the evidence base needed to move cannabis medicines from private routes of access into NHS funded systems is seen as the primary challenge ahead for all involved in UK medical cannabis.
Given the very personal nature of medical cannabis, campaigners and industry representatives argue that Randomised Controlled Trials (RCT’s), seen as the go-to method of establishing the efficacy and safety profile of new medicines, will not work for medical cannabis and RWE should be the way to go.
Campaigners also made the point that patients like Billy simply cannot wait, and that intelligent and rigorous new methods of proving safety and efficacy could enable access to cannabis medicines in a much shorter timeframe at a fraction of the cost of RCTs. This is why the #iambilly campaign is calling for the NIHR to step in to provide funding for studies capturing real-world-evidence.
Grow Pharma is honoured to stand alongside Charlotte and the #iambilly team in highlighting this important issue and setting out plans to work closely and collaboratively with government and regulators in order to solve the complex issues around accessing cannabis medicines.
More information about the campaign is available at www.iambilly.uk as well as the iambilly and keepbillyalive pages on social media channels.