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Jonathan Leighton - 24 Nov 2020
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The tide is turning, as various psychedelics are being recognised for their therapeutic potential, and the war on drugs is being recognised for its abject failure on many counts. But for cluster headache patients, the tide cannot turn quickly enough.

Peter Singer, probably the world’s most influential ethics professor, has said, “What can be worse than experiencing intense pain without relief?” The overriding urgency of relieving intense physical or mental suffering, wherever and in whomever it occurs, was the reason I founded a think-and-do tank called OPIS in 2016. We promote practical solutions to intense suffering, and aim to make this a priority of governmental decision-making.

Cluster headaches, despite the mild-sounding name, are actually one of the most excruciating conditions known to medicine. They destroy lives and drive many patients to suicide with multiple daily attacks that can last an hour or longer, often wresting them from their sleep in the middle of the night. Attacks are likened to having an ice pick driven into the eye, and other descriptions are even more vivid.

There are medical treatments that work, but they are inadequate: they don’t reliably prevent attacks from occurring, they don’t work for everyone, and they can have serious side effects that limit usage. I regularly read patients’ accounts in online cluster headache patient support groups, and they are harrowing. Many patients are on the verge of giving up.

Amazingly, it has emerged that psilocybin-containing mushrooms, LSD, DMT (the active component of ayahuasca) and other chemically related substances such as LSA and 5-MeO-DALT, most of which have hallucinogenic properties, have dramatic effects in many patients in aborting and/or preventing attacks, and even entire cycles. Effects are often obtained even at sub-hallucinogenic doses, so tripping itself is probably not part of the mode of action. These aren’t isolated anecdotes but literally hundreds of independent patient testimonials. Patients who used to have attacks every day for months at a time or even chronically found that one or two doses could stop their cycles altogether.

The problem? Due to antiquated drug laws based on exaggerated fears, most of these substances are illegal to purchase or possess in most jurisdictions, including the UK. This makes it difficult to conduct research and difficult or impossible for physicians to prescribe them. It also turns patients seeking to relieve their excruciating pain into criminals and creates a huge barrier to access and a free flow of information.

Although a few clinical trials are currently ongoing and should add to the evidence, the existing evidence of efficacy is already overwhelming. Given the severity of the condition and the relative safety of these substances, which are often effective with just a few doses, there is no legitimate justification for legally preventing patients from accessing them.

In a policy paper we just released titled “Legalising Access to Psilocybin to End the Agony of Cluster Headaches”, co-signed by several prominent neurologists, ethicists and other experts, this is the case we make. We are working with other organisations, such as the London-based International Drug Policy Consortium (IDPC), to communicate this information. We have a close collaboration with the UK-based Conservative Drug Policy Reform Group (CDPRG), who have been preparing to send our paper to the All Party Parliamentary Groups on drug policy and mental health. Despite their name, they are not affiliated with the Conservative Party, though they aim to persuade members of this party to adopt evidence-based drug policies. We are also communicating this policy paper to neurological associations, drug policy reform groups and politicians worldwide, and I made the case in a post for the Journal of Medical Ethics.

To vividly communicate the reality of cluster headaches and the need to remove barriers to access to effective medication, we also released a 2-minute  animated video, which I produced in collaboration with Athens-based artist Mary Karpetas.

The tide is turning, as various psychedelics are being recognised for their therapeutic potential, and the war on drugs is being recognised for its abject failure on many counts. Just this month, voters in the US state of Oregon approved the legalisation of psilocybin for treating mental health disorders. But for cluster headache patients, the tide cannot turn quickly enough.

 

Drawing of psilocybin mushrooms by Mary Karpetas

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