Removing the legal barriers to treating the excruciating pain of cluster headaches

By Jonathan Leighton.

There is nothing worse than extreme pain and suffering. Patients experiencing unbearable pain may take their lives to escape it. The highest priority of medicine and of society in general – the issue with the most urgent call to action – is arguably to alleviate such suffering. Although the ethical framework I propose is explicitly centred on suffering, relieving extreme suffering is a high priority according to most mainstream ethical frameworks.

Laws that prevent doctors from treating patients in extreme pain with effective medicines, or that threaten patients seeking to relieve extreme pain with criminal prosecution, are ethically unjustifiable. Rather incredibly, this is currently the case for cluster headaches, recognised as one of the most excruciating conditions known to medicine. Rated significantly more painful that migraines, kidney stones or childbirth, cluster attacks can occur many times during the day and night, last an hour or longer, and recur daily for months or even years without a break. Needless to say, these attacks can destroy patients’ lives.

How is this situation possible? And how can we change it?

Currently, there is no medication that adequately treats cluster headaches. Verapamil can reduce the frequency of attacks but usually does not prevent entire cycles, and it can have cardiovascular side effects. Sumatriptan injected subcutaneously can usually abort attacks quickly, but because of cardiovascular side effects there are limits to its use. Increased usage appears to cause rebound attacks, and it also does not work for all patients. High-flow oxygen can usually abort attacks within 15 minutes, but again, it doesn’t work for all patients, and it doesn’t prevent attacks from happening.

But it is now clear that several psychedelic substances of the indoleamine chemical family can have dramatic effects in aborting and preventing attacks and even entire cycles. They include psilocybin, found in psychedelic mushrooms, as well as LSD, DMT, found in ayahuasca, and 5-MeO-DALT. Although a few randomised controlled trials are now underway, there is already a wealth of evidence for efficacy, particularly for psilocybin. This evidence comes from scientifically conducted patient surveys and a large number of independent patient reports in cluster headache support groups and elsewhere. Although it is hard to offer precise figures, in a policy paper we just published we write that it is vanishingly improbable that the dramatic effect observed independently by so many patients was due to chance or artefact.

From a safety perspective, psilocybin mushrooms and LSD have been evaluated as among the least harmful of recreational drugs – much less so than alcohol – and psilocybin has a long history of use. Furthermore, they have often been found to be effective in treating cluster headaches with just a few, often sub-hallucinogenic doses. Given how devastating cluster headaches are, it would be essential to make these substances available to patients even if there were doubts about their efficacy.

Yet in most countries these substances cannot be prescribed by doctors. They are also illegal to purchase and possess, making it difficult for patients to access them, forcing those who can to use substances of uncertain purity and quality, reducing the availability of reliable information on how to use them effectively, and causing patients to live in fear of prosecution.

The root of the problem lies in the decades-old war on drugs. This was based on an exaggerated perception of the risk of many psychoactive substances, and on the misguided belief that a heavy-handed criminal justice approach to drug policy is better than a health-centred one. As a result, the barriers are higher to having psychoactive substances approved for medical use. Meanwhile, patients in agony are not informed about promising therapeutic options or are left scrambling to navigate legal and logistical obstacles.

As we argue in our policy paper, titled “Legalising Access to Psilocybin to End the Agony of Cluster Headaches”, governments can dramatically improve the quality of life for many of their citizens with cluster headaches, with little or no additional cost or risk, by removing the legal barriers to accessing psilocybin and related compounds for therapeutic purposes. In particular:

  1. Existing regulations must be modified to allow doctors to prescribe currently restricted indoleamines such as psilocybin, LSD, DMT and 5-MeO-DALT to patients with cluster headaches, and to ensure that these substances can be readily produced or imported for such medical use.
  2. We also recommend that existing regulations be modified to ensure that patients with a cluster headache diagnosis who purchase or possess small amounts of psychoactive substances, or who purchase and use grow kits for psilocybin-containing mushrooms, for personal therapeutic use, cannot be legally prevented from doing so or be charged with a crime or offence.
  3. Finally, a shift to a drug policy based on harm reduction and general decriminalisation/legalisation is an available policy option that would also reduce many of the legal and practical barriers to self-treatment by cluster headache patients.

While cluster headaches represent a particularly urgent case, these arguments have broader relevance. We advocate for a society where all intense pain and suffering is accorded the priority it deserves, and governmental policy-making is grounded in these ethical considerations.

Author: Jonathan Leighton

Affiliations: Executive Director, Organisation for the Prevention of Intense Suffering (OPIS)

Competing interests:  None

Social media accounts of post author: @JonLeighton1; ,

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