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People with conditions, such as motor neurone disease, and their carers deserve as much funding
for research and quality-of-life enhancement as society can give
The double-decker x62 bus that drives daily past our house between Melrose and Edinburgh is wrapped in a bright livery of blue, white, and yellow tartan. Along each side is the message “Tackling MND. Be part of the cure”. The message also invites donations to the website linked to the Foundation established by former Scottish international rugby player Doddie Weir OBE following his diagnosis of motor neurone disease (or amyotrophic lateral sclerosis) in 2017.
On 12 September 2019, Trinity College Dublin’s Academic Unit of Neurology held a Gala Dinner in honour of Doddie Weir and a photograph taken at the occasion features the man once described as a “mad giraffe” by commentator Bill McLaren, resplendent in a blue, white, and yellow tartan suit, looking no less imposing than his eponymous double-decker bus. The event raised over €30,000, which was equally shared by the My Name’5 Doddie Foundation and the Irish ALS/MND Research Group at TCD.
MND research is paying off. For example, Ireland is a leading participant in a European research initiative, TRICAL involving 42 centres in 15 countries aiming to find effective treatments for MND. And in January 2021, Mehta et al reported in Acta Neuropathologica (2021, 141: 257–279) new developments in mitochondrial bioenergetic deficits in MND motor neurones that could help “discover novel therapeutic agents for this devastating disease”.
According to the Irish Motor Neurone Disease Association, about one-in-300 people are diagnosed with MND. There are around 400 individuals in Ireland living with the condition at any one time; and although 10 per cent of those diagnosed with MND will have the familial form, most (85 per cent) have the sporadic form, occurring for no known reason.
With the National Organisation for Rare Disorders including MND in its database of an estimated 7,000 atypical conditions, the question arises of how much importance – and consequently, funding – should be allocated to discovering effective treatments and/or cures. When Hyry et al addressed the ‘Limits on use of health economic assessments for rare diseases’ in the Quarterly Journal of Medicine (2014; 107: 241–245), they noted that “[t]hose who suffer from treatable rare diseases have become a public symbol of perceived fiscal excess in modern medicine”.
This invites the inference that those who suffer from untreatable rare diseases might fare even worse… and it is something to be guarded against. For example, in an interview for the Church of Scotland magazine Life and Work (October 2008), the late philosopher Baroness Mary Warnock said: “If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service.”
Here was one of the Establishment’s great and good sparing some time to lean out of her ivory tower and shower us with the fruits of her consequentialist strain of moral philosophy, one of whose tenets is that human life has little intrinsic value, but can only be measured in terms of its quality.
It is one thing to stroll through the gloom of an Oxford college’s evening colonnade and arrive at a moral judgement whose sole validation is a justifying frame of solid theoretical reasoning; it is quite another – and as valid – to arrive at a moral judgement that is informed by intuition, emotion, direct experience, a sense of familial kinship and feelings of love.
This was highlighted in BMJ Open (2017) by Galvin et al, who explored “From first symptoms to diagnosis of amyotrophic lateral sclerosis: Perspectives of an Irish informal caregiver cohort – a thematic analysis”, concluding that healthcare professionals “need to recognise that caregivers may already be in a psychologically distressed state at the point of diagnosis, which could place them at increased risk of experiencing distress and burden from caregiving”. In this context it is wrong to assert that there are 400 individuals in Ireland living with MND: There are many more – carers – who are living with MND and need help too.
Wrestling with ‘Ethical Questions Linked to Rare Diseases and Orphan Drugs – A Systematic Review’ in Risk Management and Healthcare Policy (2020,13 2125–2148), Kacetl et al point to “conflicting moral obligations of beneficence (based on social and moral obligations) and distributive justice (based on utilitarian or legal rights), which seem to demand different approaches to allocating financial resources”.
But societal and individual values need not be irreducibly different. All we need to do as individuals who contribute to society is accept that many of us have managed to dodge MND – so far – by luck, and that one way of showing gratitude is to help those who haven’t had that luck. Those with MND, plus their carers, deserve as much funding for research and quality-of-life enhancement as society – that’s us – can give.
In Ancient Rome, when victorious generals returned from battle to parade through the streets on their chariots, a slave stood at the general’s shoulder whispering in his ear: “Remember you are mortal.” I have just seen a blue, white, and yellow tartan double-decker chariot go past our house… and I hear a whisper.