This week Charlotte Caldwell, mother of Billy – the boy who changed the law, announced the launch of the I am Billy campaign. This groundbreaking campaign is asking for the Government’s support in taking crucial steps towards improving patients’ access to cannabis medicines prescribed by the NHS.
Following the success of previous campaigning efforts which led to the rescheduling of cannabis for medical purposes, Billy Caldwell was the first child to receive unlicensed cannabis medicine funded by the NHS. The launch of this campaign comes shortly after Billy achieved a celebratory milestone in his cannabis treatment – being 1 year free from seizures.
Although Charlotte says “the story isn’t over yet – there are hundreds or thousands of Billy’s out there still.” A recent YouGov poll found that there are 1.4 million patients that are self-medicating with cannabis bought on the illicit market.
Medical cannabis has been legal in the UK since 2018. However, there have only been a handful of prescriptions issued by the NHS, and for a limited range of cannabis medicines. Despite calls from the NIHR, there is yet to be any government-funded clinical research trials commissioned to evaluate the efficacy of cannabis medicines.
‘I am Billy’ is calling on the Government to work closely with relevant research bodies to design a trial which is “fit for purpose and free for patients”. Once the study is completed, the campaign hopes to see patients with severe and chronic conditions able to access cannabis medicine through the NHS.
Should the NIHR provide the requisite funding required, one clinic has offered to run the trial, on a not-for-profit basis. The trial will be designed in collaboration with the Government, and regulatory bodies, to ensure that NICE accepts the data produced. Charlotte has requested a meeting with officials from the Department of Health and Social Care to discuss these proposals.
The campaign is in partnership with LVL Health Clinics, Grow Pharma, Kanabo, Medisonal, and QNTM Labs, and has already gained cross-party support. Charlotte and Billy recently received a hand signed letter from Prime Minister Boris Johnson expressing how their story has “deeply moved him”. He also stated the importance of NHS patients accessing “the most effective treatments”.
While medicinal cannabis is available through private clinics, there are major financial barriers to private treatment.
This groundbreaking trial may radically improve patient access, both for patients participating in the trial, and for many more once the trial is complete.
Charlotte has announced the creation of the ‘I am Billy Foundation’, to support patients in the meantime. The foundation will raise money from the public to fund prescriptions for patients with severe and chronic conditions, who cannot, or are struggling to afford their cannabis medicine. It will focus on the most serious conditions, such as epilepsy, cancer, MS, chronic pain and fibromyalgia.
Charlotte and Billy held a press conference on Thursday morning, where they were joined by MP Heather Wheeler, Dom Day and Alex Fraser. We wish Charlotte and Billy all the best with this ongoing campaign.
This piece was written by Ella Walsh, Content Officer at Volteface. Tweets @snoop_ella