Billy Caldwell Becomes First Patient To Be Granted A Lifelong Cannabis Prescription

marijuana prescription for life

Remember Billy Caldwell, the epileptic child who made headlines in a high-profile case back in 2018 because his mother Charlotte brought cannabis oil back from Canada, which was then confiscated at the Heathrow Airport in London?

Since Billy’s lifesaving medicine was taken away from him that day, he was rushed to the hospital due to seizures.

Their story angered people all over the world because it wasn’t fair: on the same year, the UK government relaxed the rules, allowing some cannabis medications to be prescribed to patients as long as they complied with specific circumstances. Yet, airport officials confiscated his medicine resulting in even more seizures.

UK Home Secretary Sajid Javid then allowed the release of an urgent license that would allow the then 12-year old Billy to obtain cannabis oil for treatment of his seizures. The controversy sparked debates once again about legalizing cannabis in the United Kingdom. The globe sympathized with Charlotte, who said that cannabis was the only medication that was effective in stopping Billy’s seizures.

Political Breakthroughs

In 2018, Billy became the first person in the nation to obtain a prescription for cannabis oil following recommendations from a doctor in Northern Ireland. And just a few weeks ago, another breakthrough occurred as Billy was granted a lifetime medicinal cannabis prescription by the NHS. The decision makes others hopeful that the same could possibly happen to thousands of other patients who are in dire need of the medication, but are not able to afford it.

The decision follows years of campaigning from Charlotte. Based on the new agreement, the first batch of medications will be prescribed by a doctor though subsidized by the NHS, and is set to arrive November 1st. This also marks the two-year anniversary of cannabis being legal in the UK.

“It’s been a long time coming, I can’t quite believe it. It means so much to us, it means everything. We’re delighted and relieved. This should now help other patients and families who’ve been campaigning for medicinal cannabis on the NHS,” Mrs. Caldwell told iNews. “There’s no need to pay thousands of pounds for private prescriptions any more because so many more people are making medicinal cannabis in the UK. Billy’s care pathway plan is now funded by the NHS – that includes his private doctor for writing the prescription and his medicine. And then the neurology team at Great Ormond Street Hospital in London who have been overseeing everything as well. It’s amazing for us after four years of battling.”

Aurora, a Canadian medicinal cannabis company, has been funding Billy’s prescriptions until June 2020. It’s no surprise that cannabis medications can rack up a serious bill no matter where you are in the world, so having this lifesaving medicine subsidized is a huge help for anyone.

Charlotte released a statement on September 10th, saying that while she was ‘delighted’, it should “never have taken so long.”

“I have in the last hour received notification from the office of the Northern Ireland Health Minister Robin Swann that my son’s prescription for medicinal cannabis will be funded by the NHS for the next four weeks.

During this period his Department has also committed to make appropriate shared care arrangements in line with the recommendations made by the Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) at Great Ormond Street Hospital following Billy’s assessment in July. The minister has further acknowledged for the first time that they have been funding this medicine since June this year.”

“This is the news I have been waiting for since February 2019 when I returned to the UK from Canada. The medicine that is now being funded by the NHS has transformed Billy’s life and I intend to work with all relevant authorities to put in place a care plan to ensure that he is properly looked after and his treatment properly monitored. “

Other Kids Not So Fortunate, Due To The NHS

Meanwhile, other kids in the UK haven’t been as fortunate as Billy. A BBC article shares input, stating that the End Our Pain campaign group says since cannabis oil has been legalized two years ago, only three prescriptions have been written. They add that the NHS has turned down at least 20 families who have asked for prescriptions.

According to the Department of Health and Social Care, there isn’t enough research out there.

Epidiolex, a CBD-infused pharmaceutical drug, is available for sale in the United Kingdom. Despite the fact that the National Institute for Health and Care Excellence recommend it for epilepsy, many say that Epidiolex doesn’t work.

So what happens to the patients who can’t get access to their medicine?

They have to wait, there is no other choice. Conventional medicines that are available to them don’t just not work, they also come with serious side effects.

UK Health Secretary Matt Hancock has requested that the NHS review obstacles to accessing products, and last year released a report that recommended an analysis of families who are accessing cannabis medications privately and see if they are able to get through the NHS. But End Our Pain and another campaign group Epilepsy Action says that the efforts have only been focused on setting up controlled trials, which are simply not enough to help these families since they need to end their current treatments before they start the trials. In addition, the trials would mean that many of them are receiving a placebo, not actual medication.

These groups are urging the Department of Health and Social Care, as well as the NHS, to follow through their commitment and get an “alternative study” so that these poor sickly children can get the treatment that they need.

“The current situation continues to leave families with desperately ill children in an unbearable position. Many are unable to access these treatments on the NHS, despite evidence that they can be effective and in some cases life-changing. Even more families who had hoped to benefit from the change in the law are unable to afford these treatments at all,” says Epilepsy Action deputy chief executive, Simon Wigglesworth.

We hope that Billy’s case indeed paves the way to help other children in need, and sooner rather than later.