Autoimmune and Non-communicable Diseases: The Overlooked Crisis in National and International Development
Autoimmune diseases are categorized as non-communicable diseases (NCDs). These afflictions are chronic, non-contagious and tend to have a pattern of slow or fluctuating progression. Even though they are all different, they share this category due to the role a defective, self-attacking immune system plays in all of them. Many share similar symptoms such as inflammation, muscle and joint problems, fatigue, digestive disorders, and neurological malfunction. They are currently incurable and require life-long medical treatment. They affect hundreds of millions of people all over the world, approximately 80% of which are women (Fairweather, Frisancho-Kiss and Rose, 2008).
The Council on Foreign Relations conducted a study analysing the reasons for and consequences of a lack of international action regarding NCDs, with a particular focus on autoimmune diseases. The research concluded that developing countries are set to lose $21.3 trillion within the next two decades due to NCDs. The World Economic Forum has ranked this collection of illnesses as being even more threatening to global economic development than financial crisis, infectious diseases - a category including Ebola, HIV, Malaria and Sepsis - environmental disasters such as earthquakes, floods and volcanic eruptions as well as general crime and state-level corruption. Despite this declaration, international aid shows no signs of prioritising or even creating an action plan for responding to this huge global threat (Council on Foreign Relations, n.d.).
The Hygiene Hypothesis
Like most other NCDs, autoimmune disorders are considered to be rapidly increasing afflictions of the modern and developed, so-called ‘Western’ world (North America and Western Europe). Scientists and medical practitioners alike commonly explain this by citing the West’s industrial revolution as leading to many infection-reducing measures such as “decontamination of the water supply, pasteurization and sterilization of milk and other food products, […] vaccination and antibiotics” (Okada et al., 2010). The argument follows that countries that have not undergone these large-scale lifestyle changes still have, unlike the West, high rates of infectious diseases and a remarkably low rate of allergic and autoimmune disorders. Such conclusions are no doubt inspired and cemented by what is commonly known as “the hygiene hypothesis.” The theory poses autoimmunity as the direct result of an increase in personal hygiene and a reduction in infectious diseases.
The science and medical communities have begun to debunk this theory as dangerous, overly simplistic and entirely misleading. Yet, rather than exploring new hypotheses, it has led to an updated version of the existing theory. Graham Rooke, a medical biologist at UCL, posits that “[e]arly exposure to a diverse range of ‘friendly’ microbes—not infectious pathogens—is necessary to train the human immune system to react appropriately to stimuli”(Scudellari, 2016, 1433). It is hypothesised that Western societies’ process of modernisation has removed these friendly microbes, as well as the infectious ones, and so our immune systems are no longer functioning appropriately as a result.
Considering these sets of symptoms and illnesses as a recent phenomenon allows for the lack of effective treatments and cures to be somewhat accounted for without the medical and scientific industries being held responsible. Meanwhile, identifying autoimmunity as a problem of developed, Western nations alone easily explains away the lack of data on NCDs in developing countries.
Lack of Data and Recognition
I argue instead that the aforementioned lack of data reflects the fact that “many patients in developing countries do not receive appropriate medical care, and autoimmune diseases are either unrecognized or inappropriately treated” (Vento and Cainelli, 2016, 54). It means that records of the condition are either non-existent or filed under an entirely different name. Furthermore, many people in developing countries do not see healthcare professionals due to financial constraints, limited supply of healthcare professionals, and practically non-existent immunological diagnostic services (Vento and Cainelli, 2016).
Where studies have been done, Lupus, for example, was found to be not just present, but in some cases, present in higher rates than western countries (Vento and Cainelli, 2016, 54). The study concluded that “[a]utoimmune diseases most likely affect well over 100 million people in low and middle income countries where they are also often more severe, occur in younger patients, and lead to higher mortality” (Vento and Cainelli, 2016, 54).
Perhaps more than any other autoimmune illness, Chronic Fatigue Syndrome (ME) is perceived as a recent phenomenon of modern, highly developed populations. Yet, the few studies that have been conducted in the developing world show the disease to be present on a scale comparable to the developed one. A Cambridge study found that “the primary care prevalence of chronic fatigue syndrome was similar in two culturally and economically distinct nations (Brazil and Britain). However, doctors are unlikely to recognise and label chronic fatigue syndrome […] in Brazil. The recognition of this illness rather than the illness itself may be culturally induced” (Cho et al., 2009).
Another study found rates of Chronic Fatigue in adults in Nigeria to be higher than rates recorded in communities of the USA (Njoku, Jason and Torres-Harding, 2007). This led researchers to question the role of “fatiguing illnesses such as malaria and typhoid” in making individuals more vulnerable to the condition (Njoku, Jason and Torres-Harding, 2007, 462). Indeed, a large percentage of the Western medical community perceives Chronic Fatigue as a complication often caused by viral infections and fevers. Given this recognition, it is illogical to assume that a lack of data on the same condition in countries where rates of infectious diseases are much higher reflects a lack of prevalence.
The New York Times commented on the increased severity posed by chronic health conditions, such as autoimmune disorders, in developing countries: “Working-age people in poorer countries have little access to preventive care and more exposure to health risks […] with limited resources to pay for treatment, those with chronic diseases are much more likely to become disabled and die as a result” (Tavernise, 2014). In rural Ghana, “minimum-wage earners with diabetes spend 60 percent of their incomes on insulin” (Tavernise, 2014). Such conditions have an entirely destructive effect on the development and economic productivity of a nation: the report notes increasingly overburdened health services, loss of national economic productivity and further impoverishment of those already living in or near poverty. In 2014, a survey identified that, in the UK, “less than one in 10 people with M.E./CFS were in fulltime paid work, education or training” (Chowdry and Radford, 2016). Meanwhile, in the USA, ME/CFS led to “9.1 billion dollars of total productivity loss” (Son, 2012). This makes autoimmunity a fundamental issue in international development because these diseases already exist in poorer, underdeveloped places on a scale of which we have no real understanding. With no clear idea of the autoimmune disease burden in developing countries, the threat they pose to individual health and international development is invisible yet substantial.
The Gender Question
Women have never been equally represented in the science and medical communities and, as patients, they continue to be perceived through sexist social lenses that label them as dramatic, hysterical hypochondriacs. Virginia Ladd, founder and executive director of the American Autoimmune Related Diseases Association, has stated that "[m]ore than 40 percent of women eventually diagnosed with a serious autoimmune disease have basically been told by a doctor that they're just too concerned with their health or they're a hypochondriac" (Ladd, 2018). Meanwhile, journalist Kelly Mickel found that “autoimmune diseases, which are three times more common in women, take roughly five years to be correctly diagnosed, and female-specific conditions like endometriosis often take a decade of doctor visits before they’re accurately identified” (Mickel, 2017).
Maya Dusenbery’s recent BBC article (2018) offers first-hand examples of cases where women with diseases - such as brain tumours, colon cancer, Ehlers-Danlos syndrome, Crohns disease and Endometriosis - have been laughed at by doctors, told they just had common menstrual pain, and have waited almost twice as long as the average male patient for an accurate diagnosis. Black women face double discrimination; studies have found that some medical professionals perceive black people as feeling less pain and being much more likely to abuse prescription drugs (Dusenbery, 2018). The consequences of delayed diagnosis and treatment for these diseases are, of course, irreparable and catastrophic. If women in the supposedly most egalitarian, educated, wealthy and scientifically advanced parts of the world are still being ignored, misunderstood and left to suffer, it seems dangerously naive to assume that these conditions are not also present in the developing world, where access to healthcare, educational opportunities and medical/scientific funding is much more limited.
With the addition of women’s precarious socio-economic position to the presence of such medical ignorance and disparity, the health risk to the world’s female population inevitably increases. In many places, women, more so than men, tend to perform unpaid housework. In the UK, women do 40% more household work than men and the Office for National Statistics “calculated that women would earn £259 a week on average if this unpaid work was remunerated, while men's efforts would earn £166” (BBC news, 2016). Large disparities in unpaid domestic work between women and men are also found in countries like Mali (5.1 hours:0.5 hours), Iraq (5.8:1), Morocco (5:0.7), Portugal (5.3:1.4), and Italy (4.7:1.6) (UN Statistics Division, 2018).
Women, thus, may face the extra barrier of financial dependency in receiving effective healthcare if they are not in paid work. Owen O’Donnell finds “evidence from Indonesia that the utilization of prenatal care increases with the control a woman exercises over household finances” and “in Africa, women make more use of public health care than men in the highest income group but the gender bias is the opposite in the lowest income groups” (O’Donnell, 2007). Women may also have to navigate disadvantages such as the global wage gap, reduced education and literacy, menstruation and lack of sanitary options, and cultural taboos related to the female body - an issue often exacerbated by the prevalence of male doctors compared with female doctors (Graham, Hale and Stephens, 2011).
This is an additional barrier that men and women already face in many developing countries, such as distance. For example, in Ghana, it is estimated that the distance to public health facilities almost doubles their utilization rate (O’Donnell, 2007). The availability and quality of facilities, irregular hours, absenteeism rates among employees, hostile staff, prevalent misdiagnoses, the pilfering of medicine by staff, and inappropriate prescribing and treatment also serve as barriers (O’Donnell, 2007). Between 1979 and 1983, the quality of healthcare in Ghana declined and was “associated with 40% fall in utilization within only five years” (O’Donnell, 2007).
If 80% of autoimmune sufferers are those who rarely come into contact with the healthcare industry due to the above socio-economic inequalities, and when they do, they are often dismissed without accurate diagnosis, no wonder recorded incidences of autoimmune disorders in developing countries are so low.
It cannot be ignored or under-appreciated that many international organisations and programmes have dedicated themselves to improving aspects of women’s health. At the UN ‘Global Leaders’ Meeting on ‘Gender Equality and Women's Empowerment: A Commitment to Action’ the sexual and reproductive health of women was a hot topic and $25 billion USD was committed to the cause (Peters et al., 2016). However, “[t]he global burden of disease has changed significantly over the past decades. Currently, the greatest burden of death and disability among women is attributable to non-communicable diseases” and therefore this is where research, funding and policy dedicated to women’s health should be focused (Peters et al., 2016).
Moreover, an international community response that focuses on women’s reproductive functions alone “is discriminatory as it excludes those women who do not have children (either voluntarily or involuntarily) and women who are no longer of reproductive age.” The humanitarian and international community is lacking an appreciation of women’s health in its totality. (Peters et al., 2016). Women’s health has wrongly become synonymous with reproductive health and, as a result, the most disabling set of illnesses women experience are going underfunded, under-researched and untreated. If this pattern continues and women are continually left behind, battling these diseases without the right support, global economic and social development will remain inherently stunted.
The international medical and political communities must be able to balance the need for sex-disaggregated data collection, research, treatment and general healthcare with an awareness of women as human beings whose afflictions do not solely or primarily stem from their reproductive organs. For this to happen, women must be more present in the relevant industries so that science and medicine are no longer fuelled by only the male perspective, male concerns and the male body. National governments and and international organisations must spread awareness of the reality of women’s health and recognise autoimmune diseases as a feminist issue, just as periods, birth mortality rates and sexuality have been.
Elise Mckeever is a University of London Literature graduate specialising in analysis of the gendered experiences of foreign policy in the MENA region & beyond. Follow her on Twitter: @elisemckeever.
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