
2022年,一位极具天赋的年轻艺术家路易·佩蒂准备返回英国。此前,他在青少年时期实际上被迫流亡荷兰,以便获取控制癫痫所需的医用大麻。六年前,当时年仅12岁的路易被诊断出患有一种罕见的神经系统疾病,那时医用大麻在英国尚属非法。
In 2022, a prodigiously talented young artist named Louis Petit was preparing to return to the UK, having been effectively exiled in the Netherlands as a teenager so he could access the medical cannabis he needed to control his epilepsy. Six years earlier, Louis, then 12, had been diagnosed with a rare form of the neurological disease when medical cannabis was still illegal in the UK.
但在鹿特丹,医用大麻是合法的,医生帮助他发现,一种名为Bedrolite的医用大麻油,配合合适的抗癫痫治疗组合,能够减缓并最终停止他的癫痫发作。这在他的英国神经科医生看来此前是不可能实现的。
But in Rotterdam, where it was legal, doctors helped him discover that a medical cannabis oil called Bedrolite, in combination with the right mix of anti-epileptic treatment, could slow and eventually stop his seizures. This was something his neurologists in the UK had previously considered impossible.

到2022年路易考入伦敦城市行会艺术学院时,在需要该药物治疗癫痫儿童的父母——最著名的是夏洛特·考德威尔和汉娜·迪肯——的推动下,英国政府已将医用大麻合法化。
By the time Louis won a place at City and Guilds of London Art School in 2022, the UK government had legalised medicinal cannabis, pressed by parents needing the drug to treat their epileptic children – most notably Charlotte Caldwell and Hannah Deacon.
路易以为麻烦已成过去。“现在看来很天真,但我想我和妈妈都以为英国会欢迎我回来,说‘谢天谢地你好了’,”路易告诉我。但路易从未能通过英国国家医疗服务体系(NHS)获得医用大麻处方。相反,像这个国家几乎所有需要这种药物的人一样,他唯一的获取途径是昂贵的私营部门。而现在,Bedrolite的生产商、一家名为Bedrocan的荷兰公司已宣布破产。
Louis assumed his troubles were behind him. “It seems naive now, but I think both me and my mum thought Britain would welcome me back, saying, ‘Thank God you’re better’,” Louis told me. But Louis has never been able to get a prescription for medical cannabis through the NHS. Instead, like almost everyone who needs the drug in this country, his only access has come through the expensive private sector. And now the producer of Bedrolite, a Dutch company, Bedrocan, has declared bankruptcy.
这意味着,在不久的将来,维持路易斯病情稳定的药物极有可能不再能通过私人渠道获得,这对所有依赖该药物的患者来说是一个巨大的打击。如果是糖尿病患者面临胰岛素短缺,或是高血压患者用完了β受体阻滞剂,政客们会争先恐后地表现出自己正在努力保障长期供应。但因为这涉及癫痫和大麻——一种因长达50年的“禁毒战争”而遭受污名化的药物——历届政府都回避这一问题,尽管患者多年来一直警告不能将他们就这样抛给私人市场,但这场危机还是发生了。
This means there is a high chance that, in the near future, the drug that keeps Louis well will stop being available privately, in a huge blow to all patients who rely on it. If this was people with diabetes facing a shortage of insulin, or people with high blood pressure running out of beta blockers, politicians would be falling over themselves to be seen trying to secure the long-term supply. But because this is epilepsy and cannabis – a medicine that has been stigmatised by a 50-year “war on drugs” – successive governments have avoided the issue, allowing this current crisis to develop, despite patients warning for years that they can’t be just abandoned to the private market.
2018年,时任内阁大臣萨吉德·贾维德将医用大麻合法化,他在议会承诺,需要大麻药物的患者漫长而艰难的抗争终于即将结束。贾维德表示:“因患病儿童令人心碎的案例而深受触动,对我来说,迅速采取行动帮助那些能从医用大麻中受益的人非常重要。”但这些益处仅惠及极少数需要帮助的人。自首批患者在国民医疗服务体系(NHS)获得处方以来,绝大多数其他患者——包括路易斯——都遭遇了医疗体系的拒之门外,医生申请公共资金开具大麻药物处方的请求在实践中极少获批。
When the then home secretary, Sajid Javid, legalised medicinal cannabis in 2018, he stood up in parliament and promised patients who needed cannabis medication that their arduous fight was finally coming to an end. “Having been moved by heartbreaking cases involving sick children,” Javid said, “it was important to me that we took swift action to help those who can benefit from medicinal cannabis.”But these benefits reached a fraction of those who needed help. Since the first few patients received their prescriptions on the NHS, the vast majority of others – including Louis – have been met with a wall of refusal from the healthcare system, with doctors’ requests for public funding to prescribe cannabis medication rarely granted in practice.

直到2025年,整个NHS系统开出的贝多莱特等未获许可大麻基产品处方不足五份。在缺乏可及的NHS途径的情况下,私人市场已成为大多数患者获得治疗的唯一途径,费用高达每月4000英镑。
Until 2025, there were fewer than five prescriptions for unlicensed cannabis-based products such as Bedrolite given out across the entire NHS. In the absence of an accessible NHS route, the private market has become the only route to treatment for most patients, costing them anything up to £4,000 a month for their medicine.
将医用大麻完全交由私营部门经营的结果是,大麻悄然成为英国新的增长领域之一,许多大麻公司因繁荣而暴富。远程在线开方、48小时上门配送以及社交媒体上的定向推广,都助长了私营客户群的扩大。
The result of medicinal cannabis being handed over wholesale to the private sector is that cannabis has quietly become one of the new growth sectors in Britain, with many cannabis companies getting rich from the boom. Remote online prescriptions, 48-hour door-to-door delivery and targeted s on social media have all helped grow the private customer base.
但私营供应商提供处方大麻电子烟笔和软糖等便于患者使用的产品时,Bedrolite却是专为药物难治性癫痫儿童特制的大麻油,无法用普通大麻替代。将大麻包装成焦虑、睡眠问题或慢性疼痛的忙碌千禧一代必备的新型健康疗法,其市场规模远大于试图治疗复杂癫痫或多发性硬化等急性但罕见疾病的市场。
But while private suppliers offer customer-friendly products such as cannabis vape pens and gummies on prescription, Bedrolite is a cannabis oil that was modified specially for children with drug-resistant epilepsy, and can’t be replaced with general cannabis. There is a much larger market for presenting cannabis as the new must-have wellness treatment for the on-the-go millennial suffering from anxiety, sleep issues or chronic pain medicine than there is for trying to treat acute but rare ailments such as complex epilepsy or multiple sclerosis.
私营公司几乎没有商业动力投入巨资,开展获得更多大麻药物许可并使其在英国国民医疗服务体系(NHS)主流化所需的昂贵、大规模、临床、随机对照试验。一旦合法化缓解了患病家属反对全面禁令的即时压力,历届政府便对这一问题置之不理。
And there is little commercial incentive for private companies to spend huge amounts of money on the expensive, large-scale, clinical, randomised control trials that are needed to get more cannabis medication licensed and mainstreamed on the NHS. Successive governments washed their hands of this issue once legalisation eased the immediate pressure from families with sick loved ones who were campaigning against an outright ban.
这种动态使我们陷入了一个悖论境地:医用大麻已成为英国新的增长产业之一,与此同时,最脆弱、最迫切需要药物的患者却无法获得用药。
This dynamic leaves us in the paradoxical position whereby medical cannabis has become one of Britain’s new growth industries at exactly the same time that the most vulnerable patients, who desperately need the medication, cannot access it.
“自从我们回家以来,接连不断遭遇打击,”路易斯的母亲艾玛说。“如果他神经科医生向英格兰国家医疗服务体系(NHS England)提出的资金申请去年能获批,他的Bedrolite供应就有保障了。荷兰有足够的库存可维持到2028年。但没有NHS处方的人买不到。”最初人们担心这种药会在圣诞节前停止在英国销售,但上周一家英国药企Target Healthcare告知家属,将储备六个月的Bedrolite库存,提供暂时缓解。然而,六个月后会发生什么谁也说不准。
“It’s been one shock after another since we came home,” said Louis’s mother, Emma. “If his neurologists’ funding request to NHS England had been approved last year, his Bedrolite supply would be guaranteed. There is enough stock in the Netherlands to last into 2028. But it’s not available to those without NHS prescriptions.”Initially, it was feared that the drug would stop being on sale in the UK before Christmas, but last week one UK drug manufacturer, Target Healthcare, told families it will secure a six-month stockpile of Bedrolite, offering temporary relief. However, what happens in six months’ time is anyone’s guess.
像路易斯这样的癫痫患者若被迫停用控制癫痫发作的药物,后果可能很严重。英国政府需要介入,与Bedrolite制造商谈判,为英国所有需要该药的患者保障供应。
The possible consequences of epileptic patients such as Louis suffering a forced withdrawal from the medication they use to control their seizures could be severe. The UK government needs to intervene and negotiate with Bedrolite’s manufacturer to secure the supply for all patients who need it in Britain.
但除了应对这一紧急情况,英国政府还需停止无视医用大麻行业,建立必要的投资和监管框架,使其成为NHS可接受的处方药。
But beyond this emergency, the UK government needs to stop ignoring the medical cannabis industry and put in place the necessary investment and regulatory frameworks for it to become an accepted prescription on the NHS.
即使在Bedrocan最近破产之前,家属和活动人士一直坚持认为,患者不应被迫听任波动不定的私人市场摆布,只因为政客们太害怕将大麻这种仍带污名的药物在NHS常规化可能带来的负面新闻。
Even before the recent bankruptcy of Bedrocan, families and campaigners have been insisting that patients shouldn’t be forced to live at the mercy of the volatile private market, all because politicians are too scared of the negative headlines that might come from mainstreaming a still-stigmatised drug such as cannabis on the NHS.
“健康不应取决于你是否有足够财力负担,甚至能否获得治疗,”临别时路易斯对我说。未来几个月我们将看到,掌管这个国家的政客们是否同意这一观点。
“Health shouldn’t be an issue of whether you are wealthy enough to afford it or even be able to access it,” Louis said to me as we parted. We will see over the next couple of months if the politicians in charge of this country agree.
科乔·科拉姆博士是拉夫堡大学法学与政治经济学教授,也是《下一个修正案:未来毒品政策中的赢家与输家》一书的作者。您对本文提出的问题有何看法?
Dr Kojo Koram is professor of law and political economy at Loughborough University and the author of The Next Fix: The Winners and Losers in the Future of Drugs Do you have an opinion on the issues raised in this article? If you would like to submit a response of up to 300 words by email to be considered for publication in our letters section, please click here.