The shakiness of our foundations.

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Karl Marx wrote that ‘the history of all hitherto existing society is the history of class struggle’. To many people the idea of class struggle seems archaic and belonging firmly to the 20th century. An equally 20th century idea is that of living through a deadly pandemic – a scenario that has for most of us only been conveyed through history books, and a scenario in which we have collectively been thrust by the once-in-a-century unprecedented COVID-19 pandemic. This current pandemic is exposing the problems within our current economic and social systems, and most importantly exposes the fragility of the human right to health. It turns out that the emperor is naked.

Inequalities in access to healthcare between Global North and Global South countries have, rightfully, long been the focus of conversation surrounding global health. Soon after the WHO declared a public health emergency of international concern (PHEIC), the Director General, Dr Tedros, pointed out that this virus could be most lethal and dangerous for countries with weaker health systems, largely (though not uniquely) corresponding to the Global South. Beyond ‘developing’ and conflict-heavy countries with weaker health systems, the current pandemic has exposed the health inequalities that exist within the Global North as well. In many Global North countries, in the years after the crashing down of the neoliberal order, austerity (to varying degrees) has been the go-to policy with public sector jobs being cut, and many people being thrust into unemployment and even poverty. This has had many consequences on health (both mental and physical) and has caused many of our countries to be woefully underprepared for something as catastrophic as a pandemic.

In recent weeks, governments have been calling on ‘essential workers’ and their skills. Many people across the world have been applauding their healthcare staff from their windows, balconies, living rooms and their palaces. We have, rightfully, been supporting ‘essential workers’, but what does that mean when essential workers have been devalued for years within our societies? When many of the people we have elected have been the ones to systematically cut funding for healthcare and the minimum wage is still not necessarily a living one. Many essential workers are in low-paying jobs, and additionally many essential jobs are traditionally feminised roles such as caring professions and domestic and service jobs. This exacerbates already exiting inequalities where they exist.

One of the most effective ways to slow the spread of infectious disease is through social – also called physical – distancing measures such as working from home, staying at home as much as possible, and avoiding close physical contact with other people not part of one’s household. However, for many people, many of whom economically disadvantaged and/or marginalised, this is nearly impossible, increasing the burden of mortality for this group. For many these people working from home is impossible because of the nature of their jobs, staying at home would mean a loss of income and livelihood, and there is a lack of paid sick leave and no (affordable) available childcare.

But beyond income inequality and depletion of resources for many of our health services and the low-wage nature of many essential jobs,, there are other vulnerable groups who will be suffering from increased difficulty in accessing healthcare during the pandemic. An example of this are the homeless who will not have the opportunity to social distance in the same way those with a home do, and who will often not be able to access quality healthcare as easily. Another example of a vulnerable group who might experience more difficulty are prisoners. Prisons are often not adept at containing major infectious disease epidemics. Thirdly, immigrants and refugees who are currently living in dire conditions in camps and settlements, particularly as these people will likely live in crowded places with poor sanitation and more difficulty to access healthcare. Beyond the elderly and those with underlying conditions, there are so many other people who might be particularly at risk in this time. Many of whom have been neglected by society, but all of whom are particularly at risk of having their human rights abused.

This global pandemic has shown us that, even though health is a human right, it is only as viable and attainable as the strength of our health systems and our care for the most vulnerable in society are.

Health is a human right as recognised in the Universal Declaration of Human Rights. The decade of systematic cuts to our health systems and the secondary effects of austerity of thousands of people working in precarity and dealing with failing living standards have caused us to be woefully unprepared for a catastrophic event like this. This global pandemic has shown us that, even though health is a human right, it is only as viable and attainable as the strength of our health systems and our care for the most vulnerable in society are. In a world where the rich are able to self-isolate in mansions or second homes, and get access to tests even when others can’t, it seems difficult not to imagine there might be an aspect of class strife involved. It seems clear that we won’t be able to return to normal after the pandemic is over. The shaky foundations our systems are built on are not likely to survive in tact after this. It is then up to us to decide what’s next and to prepare for the next pandemic – which will come – in more comprehensive ways such as defending the right to healthcare, increasing its access, funding our health systems, implementing fairer labour policies, and redistributing wealth. We must applaud our essential workers, but we must also not forget them when this pandemic is over and they ask for more than just verbal appreciation. We, after all, are only as strong as the weakest link and at the moment the tower is crumbling.

Healthcare as a human right.

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Any discussion of universal healthcare is seemingly conducted as if it is a solely partisan issue. The left wants universal healthcare, the right doesn’t — so goes the argument. However, the fact of the matter is that the United Nations’ Universal Declaration of Human rights, article 25, states that:

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

The countries that have signed up to this declaration have implicitly or explicitly accepted healthcare as a human right. Most countries provide free or affordable healthcare to its citizens, but how it manifests for non-citizens seems to differ between countries. We can do better.

War and natural disasters seem common and omnipresent, and will likely increase with climate change. Unsurprisingly, these calamitous events will also leave the most vulnerable exposed to health risks — particularly women, children, the elderly, and the chronically ill. Particularly in war and conflict areas, getting healthcare to the most vulnerable populations can be an arduous task, made more difficult by various state actors and disparate political motivations. Attacks on humanitarian aid workers make it difficult for vital medical care to arrive to the people who need it most. The World Health Organisation’s (WHO) 2017 report estimates that 14.8 million people in Yemen have no access to healthcare, and the International Medical Corps has said that delivering healthcare to affected populations in the country is difficult with major infrastructure destroyed, and the lack of a government that could support them. In addition, Amnesty International reports that the Saudi-led coalition has restricted the access to essential goods such as medical supplies from entering Yemen. The situation in Syria is equally dire, with the WHO reporting calamitous conditions in Syrian refugee camps, and additionally refugee camps housing former members of ISIS and their children have also not received adequate medical assistance. Chatham House experts recently wrote that many people with chronic illnesses end up being under-treated in war and conflict as the nature of chronic illnesses and the nature of war make it logistically very difficult to help them. In many instances, these local makeshift hospitals end up being in rebel-held territories with Western aid organisations fearing a loss of funds if they were to support these hospitals. From a security and counterterrorism point of view this might make sense, but the fact of the matter is that vulnerable people will see their right to medical assistance denied. It is clear that healthcare as a right is often a casualty of war, with deliberate attacks on hospitals, as well as restrictions on humanitarian aid depending on whose side the territory is held by, creating more issues for the local population and constituting continuous violations of international humanitarian law and human rights.

Closer to home, it is often the case that refugees and immigrants do not get to enjoy free healthcare in the same way citizens of a country can. A report by the Equality and Human Rights Commission published in 2018, showed that asylum seekers in Britain are often afraid of seeking medical care for fear of high costs, or being tracked by the Home Office. Ambiguities and an increasingly hostile environment for migrants, refugees, and asylum seekers, create inaccessibility to healthcare for an already vulnerable group of people. Guaranteeing that everybody, regardless of background and citizenship status, gets access to healthcare that respects human rights, requires political will and leadership. Moreover, people with mental health issues are still often subject to violations of human rights in mental health care where they are often stripped of agency and dignity — this has been the observation of the UK’s parliamentary and health service ombudsman as well. In the United States, many black women are dying in childbirth because they are not listened to in health settings and their human rights are systematically violated. Worldwide, people with dementia are still fighting for their human rights to be respected. There is still a lot to be done.

So, how do we make sure that human rights are respected and guaranteed, even in disaster and conflict zones, even when someone is an asylum seeker or a refugee, and even when the patient is disabled, mentally ill or cognitively impaired? There is no simple answer, but political leadership that sees beyond manoeuvring and posturing to behold the human cost of war, conflicts, health disparities locally and globally, and the victims it makes, would go a long way. In an international setting the countries with vetos in the UN security council have a particular responsibility to look beyond political expediency and geopolitics when the stakes are so high and there are no winners. The WHO has a prime position as an intergovernmental organisation to coordinate medical response and epidemiological research, and assist local governments after a disaster or in conflict zones. Human rights organisations monitoring, researching, and advocating for human rights to be respected, in conflict and in peacetime, play a vital part in holding the powers that be to account. Academic research in how to best coordinate humanitarian aid, particularly medical aid, in disaster and conflict zones is imperative. Non-governmental aid organisations and their local partners on the ground need continued support to take care of affected citizens regardless of their affiliations in war. Disability and mental health advocates need to be listened to. And finally, as citizens we have a duty to be aware and cognisant of our human rights, the inalienability of it, and that by respecting them we are doing not only the other, but our selves, a great service. By being informed and educated on the role human rights play in our day to day lives, we can lobby and advocate our local governments, and in turn politicians of good will can effect change. Eleanor Roosevelt, the mother of the UN Declaration of Human Rights, said it best:

Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighbourhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.

Dementia, global health, and policy.

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When we think of dementia we often think of the elderly, probably in care homes, possibly our own family. Most of our visions are of dementia’s manifestation in high income countries. The truth of the matter is, that an estimated 58% of people with dementia live in low- and middle-income countries (LMIC) . To add insult to injury, it was estimated that only 10% of the research into dementia is focused on people living with it in LMIC (Prince et al., 2008).

Many people in LMIC will go undiagnosed, as people often see dementia as a normal part of ageing and those suffering are often stigmatised. Seeing dementia as a normal part of ageing is in and of itself not limited to LMIC, as many people in high income countries at the very least seem to think it is a kind of inevitability. Moreover, stigma certainly also still exists in the West. Many people who are diagnosed indicate that they feel isolated, that their lives are over, that people stop treating them as fully human, and in extreme cases in certain parts of the world elderly people — primarily women — with dementia are accused of witchcraft and ostracised, and in the worst cases, even killed. 

Because dementia is a disorder that will affect more and more people as populations, on average, get older and older, it is often seen by organisations such as the World Health Organisation (WHO) and Alzheimer’s Disease International as a global health priority. Global health is a relatively new concept, with a relatively vague definition, but is generally taken to mean the promotion of equality when it comes to access and quality of healthcare worldwide. Global mental health, has a similar remit only focused on the psyche rather than (just) the physical body. Although these ideals are lofty, and the UN declared health care a human right (article 25 of the UN Declaration of Human Rights — I suggest you give the whole thing a read), there is always the looming possibility of Westerners imposing their own view on others; some would even go as far as to say it is a form of neocolonialism. That does not, however, mean that I think we should throw out the baby with the bathwater. Global (mental) health can be directed by the people of the Global South with the Global North and its institutions (such as the UN) aiding and advocating on their behalf. This means employing, and listening to, locals who will take the cultural sensitivities into account (examples include Chief Kiki Laniyonu Edwards who works to tackle stigma of dementia in Nigeria; Zimbabwean grandmothers offering therapy, Benoit Ruratotoye, a Congolese psychologist trying to tackle violence against women and particularly help the spouses of women raped as a weapon of war to come to terms with what happened, or Women for Afghan Women) . It means adjusting our diagnostic manuals and criteria so that they are relevant and valid within the country’s specific cultural context. It is working together with the spirit of true equality, seeing the people in LMIC/Global South not as people we need to convert, but people we can work with for the benefit of us all.

Returning to the lack of basic research on dementia and its manifestations in LMIC, I think it is important as scientists to be aware of our own biases and our tendency to extrapolate and apply our Western experience to that of everybody else. It is important for researchers in LMIC to have the funds and means to conduct studies on the manifestation of not only dementia, but mental health issues, in their own people and in their own cultures. It is vital that Western universities collaborate, not as superiors but as true and equal partners with the desire to bring about equality in access and quality of healthcare.

I am of the belief that basic scientists, local experts, global health professionals and policymakers would be best served in working together. Issues such as dementia and depression have different cultural manifestation in different cultural contexts. It is vital that policy is made on the basis of scientific knowledge, local knowledge, cultural sensitivity and a genuine belief in promoting equality of access and quality of healthcare. Perhaps the UN as an institution, and definitely its human rights declaration, is too optimistic or idealistic in a world full of violent realities. But it is most certainly the kind of hope and optimism we need on this blue planet we all share. Combining our knowledge (both Western and non-Western, scientific and traditional), using our privileges for good, and looking beyond our own bubble without superiority is the only way we can get closer and closer to the lofty dreams and aspirations of a truly equitable world where human rights, including the right to healthcare, are respected.

Let’s talk about Brexit.

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At this point in time it is absolutely understandable that nearly every person in the EU27 and UK has the urge to start screaming into a pillow the minute they hear the word ‘Brexit’. The UK’s (or rather England and Wales’) decision to leave the European Union in 2016 has turned out to be, not completely unexpectedly, a complete omnishambles (to quote our favourite Alastair-Campbell-inspired Scot named Malcolm Tucker (The Thick of It)).

We have already heard the stories about Brexit being bad for the NHS, how it will make running out of groceries a real possibility, will potentially tear families apart, and will generally make life more difficult for EU citizens in the UK, and UK citizens in the EU. However, science is another, perhaps underreported, casualty of the UK’s decision to leave the EU. The most obvious way Brexit will affect UK science (particularly if the ever more likely ‘no-deal’ scenario becomes a reality) is by the reduction of EU funding available to researchers in the UK. Funding is one of the pillars of science, and though Horizon 2020 eligibility will not be affected post-Brexit, funding from the likes of the European Research Council will very definitely not be available to UK researchers (see also the British Neuroscience Association’s latest update on Brexit). Unless the UK government will fully compensate the lost EU funding (with the state of the current government you would be forgiven if you were rather…pessimistic about that prospect), it seems likely that the fuel that keeps the scientific enterprise going could soon run out…or at the very least be reduced.

In addition to the issue of funding, the simple fact that the majority of non-UK researchers in academia come from other EU countries is a major issue. A no-deal Brexit where the UK becomes a third country and EU citizens will have to go through the tedious immigration constraints that already haunt non-EU, non-UK researchers, will very likely make the UK a less attractive option for EU scientists. Add to that the fact that many UK researchers have worked or trained abroad (including in the EU), that about 35% of postgraduate researchers in the UK are from the EU, and that over 5000 EU researchers brought EU funding with them, you can see that we have a bit of a sticky situation.

In a Nature editorial published late September, it is outlined that the tangible effects of Brexit are already seen. UK researchers are seen as a risky bet by EU academic institutions and these universities are therefore teaming up with institutions somewhere other than the UK. Of course the issue of funding comes up yet again, but more poignant to me is the fact that many UK and EU scientists are feeling uncertainty. Believe it or not, scientists are people too! They fall in love, they move abroad, they have children, they build lives, and make friends like everyone else. UK scientists in the EU and EU scientists in the UK will not only be feeling the effects of Brexit in their careers, but also psychologically and socially. Mixed marriages and relationships will be complicated by the uncertainty. Some EU countries do not allow dual nationalities, forcing scientists (and others) to make the unfair choice between the country of their birth and the place they currently call home. Sometimes it gets even messier with citizen children and non-citizen parents or partners. Understandably some EU citizens got worried after the Windrush scandal broke this summer, with fears of a Home Office “mistake” being repeated in the future.

Regardless of one’s opinion on Brexit, I think we can agree that the way it is currently being handled by the UK government is suboptimal. It is incumbent upon the UK government to see Brexit a little less as some quest to sort out internal party conflict, or to stubbornly carry out a very subjective interpretation of a mandate, and more as something that will affect millions of people, businesses, families, and importantly, science. A bit more level-headedness and rationality and a bit less rhetoric would at the very least make the situation a lot less painful.