This admittedly somewhat sensationalist article has reminded me how perverse the mainstream approach taken to treating neurological sleep disorders is (I’m speaking here particularly in the context of the Canadian and UK healthcare systems).
It is widely recognised that sleep deprivation increases risk for a whole host of comorbidities from heart disease to diabetes to Alzheimer’s, and that overall, it tends to correlate with decreased lifespan. It is also widely known in the medical field that sleep disorders such as narcolepsy and Idiopathic Hypersomnia effectively result in severe sleep deprivation. Contrary to the popular belief that because we sleep well in excess of adult human norms we are exceptionally well-rested, our hypersomnolence is in fact a symptom of a central nervous system that is functioning as though it has not received ANY sleep for approximately 72–96 hours. Similarly, in circadian rhythm disorders, where a person’s neurological clock does not align with the acceptable 24 hour, 9-to-5 clock of capitalist society, attempts to conform to a normative day-night cycle result in severe sleep deprivation.
Given the significance of restorative sleep in relation to health and longevity, this would suggest that preferred medical treatments for neurological sleep disorders would a) target neurochemistry in such a way as to normalise sleep signalling and / or sleep architecture so that the brain is no longer functionally sleep-deprived, or b) provide adaptations and accommodations that enable a person to achieve a quality of life on their non-normative circadian clock.
Instead, the primary treatments for both hypersomnolence and circadian rhythm disorders do nearly the opposite. They focus on forcing the central nervous system to ignore its extreme sleep deprivation and to stay awake anyway. This is accomplished through administration of stimulants and wakefulness-promoting agents such as modafinil, methylphenidate and amphetamine, and through ‘lifestyle adaptations’, which literally translates to ‘train yourself to work through the torture of sleep deprivation’. Notably, when you fail either course of ‘treatment’, you are regarded as a problem. You may be told you’re not trying hard enough, or that your doctor can’t do anything else for you.
Equally notably, there exist treatments — particularly for hypersomnolence disorders — that do target the fundamental problem of sleep deprivation. Sodium oxybate, for narcolepsy, normalises sleep architecture so that sleep becomes restorative. Pitolisant, also for narcolepsy, targets histamine receptors in the central nervous system, which are thought to contribute to abnormal sleep signalling. Clarithromycin and flumazenil, for idiopathic hypersomnia, appear to down-regulate pro-sleep signalling in the central nervous system. None of these are widely available. Clarithromycin and flumazenil are still considered ‘off-label’ treatments, which means they are administered at the physician’s discretion. I have never once encountered a physician who was willing to prescribe either. (Flumazenil in particular is difficult to obtain because it is produced only in very limited quantities by a handful of dispensaries throughout the world.) Pitolisant has only been approved in the EU and the UK; I know of only two doctors in the UK who are willing to prescribe it. To my knowledge, only one of them prescribes it out of an NHS clinic. Sodium oxybate costs $2000 per month in Canada and is not included on the Ontario Drug Formulary and therefore not covered by the Ontario Disability Benefit or the Trillium Health Benefit. I have yet to find a doctor who is willing to support an application for Ontario’s Exceptional Access Programme, despite my severe intolerance of modafinil and stimulants. In the UK, patients are flatly denied Xyrem in spite of poor response to first- and second-line treatments.
Even in the rare cases where these medications do become available to patients, they typically become available only as ‘third-line’ treatments — that is, a last-resort option when a patient responds poorly to the lifestyle modifications and stimulants that constitute the healthcare system’s first- and second-line approaches.
And this is very revealing of the way in which even (especially?) socialised healthcare systems conceive of ‘illness’, ‘health’ and ‘medicine’. Their priority is to restore the patient to a level of functioning that is minimally disruptive to the operation of the capitalist state, at a minimum of cost to the state. The ‘problem’ as they define it has nothing to do with wellbeing or even with life itself; rather, it is inability of the patient to participate productively within the capitalist economy. Their solution is literally to sacrifice our bodies, and years of our lives in order to minimise our negative impact upon the state.
When ‘healthcare’ functionally defines illness in relation to economic impact, and literally sacrifices patient lives in order to mitigate that impact, the notions of health and medicine are revealed as weaponised constructs of the industrial-capitalist state. This is why a socialised healthcare system on its own will never be the solution to health inequity. As long as healthcare operates within, and enacts the agenda of, a capitalist state, its ultimate function and goal will be the exploitation of bodies in the name of economic profit.