Why Shouldn’t This Bother Us? Mental Illness and the Global Burden of Disease
Dr. Anne Becker of Harvard University’s Medical School
Dr. Walker Karraa had the opportunity to interview Dr. Anne Becker (Harvard University) about a critical but often underexamined issue affecting global health – the burden of mental illness. During their rich and wide-ranging conversation, Drs. Karraa and Becker discussed:
The economic and health consequences of leaving the global burden of mental illness unaddressed,
The ethical responsibility of more developed countries to address mental illness in poorer nations, and
How to amplify the message of the importance of investing in global health.
Here are just a few illuminating quotes from Dr. Becker:
“…if we can be so successful with programs built around HIV/AIDS, malaria, tuberculosis; what’s to stop us from addressing non-communicable disease, and mental disorders?”
“This convention of one-to-one care delivery while it may be comfortable and optimal in some settings and may produce excellent results, this model is just not going to be a model that’s scalable.”
“…why should the fruits of the scientific research and knowledge generated here… only be accessible and affordable for people in this region (this region being the U.S. or the Western world)?”
What follows here are highlights of the interview. Full text of the entire conversation can be found here.
When I came across an article in the New England Journal of Medicine1 written by two of the leading researchers at Harvard University stating “According to virtually any metric, grave concern is warranted with regard to the high global burden of mental disorders, the associated intransigent, unmet needs, and the unacceptable toll of human suffering”… (p. 71)—I stopped short.
Did they just say that? In the NEJM? Digging deeper, I found that indeed, some of the boldest call for action in the amelioration of mental illness was published in the article Mental health and the global agenda1 by Becker and Kleinman (2013). In short, despite statements of intention by the World Health Organization (WHO)2 and incontrovertible epidemiological data– one of the leading contributors to the global burden of disease remains largely unaddressed: mental illness. Becker and Kleinman (2013):
When the World Health Organization (WHO) European Ministerial Conference on Mental Health endorsed the statement “No health without mental health” in 20052, it spoke to the intrinsic — and indispensable — role of mental health care in health care writ large. Yet mental health has long been treated in ways that reflect the opposite of that sentiment. This historical divide — in practice and in policy — between physical health and mental health has in turn perpetuated large gaps in resources across economic, social, and scientific domains. The upshot is a global tragedy: a legacy of the neglect and marginalization of mental health.3
Becker and Kleinman (2013) reviewed the daunting data regarding the 7.4% of total global burden of disease attributable to mental illness1. They further suggested an immediate and comprehensive paradigm shift in models of treatment, agendas of research, and human rights policies addressing the “enormously negative, destructive, and almost universal stigma that is attached to mental illnesses, to patients with a mental illness and their families, and to mental health caregivers” (Becker & Kleinman, 2013, pp. 70-71).
Moreover, Becker and Kleinman (2013) noted that in 1990, the global aggregate burden of years lived with disability due to mental illness and behavioral disorder was 22.2%. In 2010, it was 22.7%. Globally, the vast majority (75%) of people suffering a serious mental illness never receive treatment. Ouch. We clearly have work to do.
These data beg the hard questions necessary to unpack the problem, and offer solutions. In December, I had the incredible good fortune to ask questions of the lead author of this article, Dr. Anne E. Becker, in her office at Harvard Medical School.
#1. We need a louder voice
Dr. Karraa: I wanted to start at the conclusion of your article, where mental health has arrived on the global health stage; it is here. Since the development of the Global Burden of Disease4 measurements coming from public health in the 1990s, we’ve learned that mental illnesses are universal—they occur in every country, and culture. We know now that mental health is inextricably a part of physical health; and untreated mental illness represents a 7.4% the world’s measureable burden of disease. Also, we have learned that mental illness can lead to human rights violation, victimization, and abuse. So my first question is–what do you see happening if we don’t address the global burden of disease that occurs through mental illnesses?
Dr. Becker: If you trace the history of the global health, and even the global health movement, there has been always a focus on infectious disease, and partly because that’s what was seen as different, and also what was perceived as an economic and health threat to colonial interests, if you will. That is, I think, an ignoble dimension of the history of global health.
But more recently there’s been a sense that if we can be so successful with programs built around HIV/AIDS, malaria, tuberculosis; what’s to stop us from addressing non-communicable disease, and mental disorders? Not that we should really parse those, because mental disorders are non-communicable diseases as far as I know. But there has always been this tension in the field of public health between so-called vertical programs that are organized around a disorder or a set of disorders, and horizontal programs, which are organized around health services that might be considered more in line with primary care–unfortunately this has led to polemics that aren’t always helpful in addressing needs in global health. Too often the argument degenerates into an either/or kind of argument and then people hear the advocacy for more services for mental disorders as – something that will take away from other important disorder-specific programs that are near and dear to them.
Priorities are also informed by what resources are available, financial and otherwise, as well as local political will. And sometimes also by who has the loudest voice. Unfortunately, as we both know, the constituency that is served by mental health services doesn’t always have the most persuasive or loudest voice, and thus they’re relatively disenfranchised.
Prior to the publication of the Global Burden of Disease [Study] data, actually there was not a good understanding that mental disorders were imposing such a large burden globally. So when these data were published in the 1990s4, it was really the first time that we were able to compare apples to apples and understand, at least comparatively speaking, what kind of health burden mental disorders were imposing. But also an important shift in the dialogue about needs, was the understanding that these disorders are all over the world. Whether or not they present in the same way, whether or not there’s some difference in distribution, they matter a lot…
Dr. Karraa: They’re here.
Dr. Becker: Exactly. They’re here. They matter, they impose burden. Not just a burden of suffering due to poor health, but also an economic burden.
#2. The Culture of Allocation
Dr. Karraa: As you noted, now that we have kind of bridged that gap in our intellectual understanding of the universality of mental illness, and its impact, we are left with what you refer to as a “Gordian knot” of problems. I saw it as a moving system of interconnected, impossible system of deficits: the lack of trained workforce, the lack of empirical research in both psychiatry and epidemiology, the lack of scalable models of care, and a lack of political will. As I was doing the research for this interview, I kept wondering what is it that’s fueling the knot? What is it keeping it going?
Dr. Becker: Well I wish I knew the answer. And I’m sure it’s multifactorial. To some extent there’s bureaucratic inertia around how budgets are made. The allocation to mental health services is disproportionately small to the burden of mental illness across public health sectors—especially in lower and middle-income countries. The problem is that even if a budget isn’t flat, it’s not growing in leaps and bounds. And so you can appreciate that to suddenly say, “Gee, wow look at this pie chart, look at the fact that the largest contributor to years lived with disability was mental disorders. Let’s allocate proportionally.” begins a conversation about what we’re going to have to take away from a different disease. Politically that’s very challenging.
Besides the inertia around changing the culture of allocation, and I don’t think that mental health activists want to see anyone have their resources taken away, but rather would prefer to augment what there is, integrate better, and leverage what there is. We have that figure that shows the number of graduates as mental health specialists over the past year, and that is so disheartening because we’re not just going to get to the level of specialists we need. And even if we did, even if we got to a higher level of specialists more quickly, it’s questionable whether the model for mental health services delivery is going to be sustainable or adequate. This convention of one-to-one care delivery while it may be comfortable and optimal in some settings and may produce excellent results, this model is just not going to be a model that’s scalable.
And that’s where we get into the idea of better leverage of the scarce expertise through task sharing and collaborative care. Such a model will require training mental health specialists to teach and supervise non-specialists more and less often be the primary deliverer or mental health care. And that is going to take a huge cultural shift in how we approach training.
#3: What is of value?
Dr. Karraa: When I read your work, I hear strong descriptive language that I don’t hear in other scientific or policy discourse. Words like, “urgent, dire, grave, and moral”. And I’m curious, what is the moral imperative, the ethical responsibility of developed nations to address the global impact of mental illness, and how do we get the message across?
Dr. Becker: It’s a slow march. I guess there are two kinds of scenarios. One is allocation within a health budget locally, and the other is when you’re talking about multilateral funding of health initiatives. What are the values that are embedded in those sorts of allocations? And again, the values are going to be contested right? I mean, different people have different things at stake. And some people are guided by the cost effectiveness argument. Now I can’t argue with cost effectiveness; however, cost effectiveness can degenerate into a rationalization of setting a very low bar for what results or what outcomes are sought or a pretext that funders back away from something is really urgently needed. So people say, “Well we can’t afford it. The cost is too high.” As an anthropologist, in addition to being a psychiatrist, I understand that cost is socially constructed. So when we say “affordable” that is also socially constructed. And we saw for example with HIV/AIDS drugs; we saw that initially the “price” could come way down.
So then you go to another kind of value for setting priorities in healthcare: health equity and social justice. Certainly the orientation of this department is that we need to ask the hard questions. For example, why should the fruits of the scientific research and knowledge generated here on Longwood Ave. only be accessible and affordable for people in this region (this region being the US or the Western world)? Why should we tolerate not acting when we know that there are effective therapeutics available—and I don’t just mean for mental disorders? Why should we tolerate what we know is an inequitable distribution of these therapeutics? Why shouldn’t this bother us? Why shouldn’t we continue to push against the idea that there’s nothing we can do?
How do we think of our role and responsibility vis-a-vis the rest of the world? And from a social justice point of view, we should be asking ourselves this question every day, “Why is it that we have more and we aren’t finding a way to make it available elsewhere where it could be useful?”
#4: Understanding Stigma
Dr. Karraa: Your work in Fiji, described in your book Body, Self, and Society: The View from Fiji5
(1995; University of Pennsylvania Press) explored many themes of disclosure of social taboos, including mental illness, or what we might term mental illness in the West. What developments are you seeing regarding stigma in the pursuit of global mental health advocacy?
Dr. Becker: If people are self-silencing about their mental distress, it’s in many cases because they are aware of the costs of disclosure, which include the stigma you mentioned. And so certain mental illnesses like depression and anxiety that can be born silently are relatively invisible whereas other illnesses that are more visible by virtue of the fact that they may be disruptive in some contexts or at some times, like schizophrenia or bipolar disorder.
There are many forms of emotional suffering/mental illness that are not only relatively invisible, are also unvoiced when the people who tend to suffer from them are very vulnerable and don’t really have a lot of health agency or self-agency. For example, take eating disorders in Fiji: believe it or not, there appear adolescent girls who are symptomatic in ways that don’t look exactly the way we expect for an eating disorder, but are nonetheless associated with distress and impairment. These young women in Fiji, moreover, don’t generally have access to mental health services so it’s not going to help them a lot to articulate what it is they’re feeling. And they’re also not on the public health radar and don’t register as local priorities. On the other hand, when you look to document the burden of illness affecting an underresourced community, you might well hear back, “Well why document it when we don’t have services for it?”
But you can’t plan services well without knowing what the burden of illness is. Now I’m working in Haiti, and we had a sort of a different situation which was that post-earthquake there were a lot of dollars going to Haiti as well as political will to build mental health services because people could finally understand that anyone–me or you or my brother—could be affected. But then at that point, nobody knew what the burden of mental illness was, nor was there a culture for help seeking. So it was sort of a different kind of problem which is: how do you get people to understand their distress as something that has a remedy, and then help them navigate to services?
#4: Amplifying the Message
Dr. Karraa: What is the answer? How do we continue the slow march?
Dr. Becker: We live in a society with people who have multiple interests and there are many competing arguments for how to spend money; there are plenty of places for money to go. And then it comes down to convincing people why they should care about one health problem or another, this region or that one. And if people are not moved to action from a social justice point of view, then perhaps they will be convinced that an investment in mental health is also a sound economic investment. The data for making either of those arguments are incontrovertible. I mean, huge burden of disease, suffering, unmet needs, economic costs, and social justice. And all we can do is just keep honing the message, amplifying the message until something gives.
My interview with Dr. Becker affirmed the necessity for deepening our ability for self and systemic reflection. How might we as individuals, institutions, and nations maintain the problem in direct or indirect ways? To what advantage? What feeds the sense that we might lose something by cutting the Gordian knot of problems surrounding effective treatment of mental illness on a global scale? Who profits from maintaining our professional and public fears of addressing the suffering of the proverbial “other”? How can suffering be tolerated in one realm of disease and not another? Why shouldn’t it bother us?
I look forward to hearing your questions in our ongoing search for solutions to the “thorny problems” in addressing the burden of global mental illness.
More about Dr. Becker:
Anne E. Becker, MD, PhD is the Maude and Lillian Presley professor of global health and social medicine and associate professor of psychiatry at Harvard Medical School. She is also vice chair of the Department of Global Health and Social Medicine as well as associate director of the MD-PhD Program at Harvard Medical School. Dr. Becker received her PhD in anthropology from Harvard Graduate School of Arts and Sciences and her MD from Harvard Medical School. She trained in psychiatry at Massachusetts General Hospital. You can also view a short video of Dr. Becker here.
Becker, A.E. & Kleinman, A. (2013). Mental health and the global agenda. New England Journal of Medicine, 369, 66-73. Doi: 10.1056/NEJMra1110827.
World Health Organization (WHO). (2005). Mental health: facing the challenges, building solutions — report from the WHO European Ministerial Conference. Geneva: World Health Organization.
Saraceno, B., & Dua, T. (2009). Global mental health: the role of psychiatry. European Archives of Psychiatry & Clinical Neurosciences,259, S109-S117.
Murray, C.J.L., & Lopez, A.D., (eds.). (1996). The global burden of disease. Geneva: World Health Organization.
Becker, A. E. (1995). Body, self, and society: the view from Fiji. Pennsylvania, PA: University of Pennsylvania Press.
Walker Karraa, PhD is a perinatal mental health researcher, advocate and writer. She is currently regular perinatal mental health contributor for Lamaze International’s Science and Sensibility, Giving Birth With Confidence, and the American College of Nurse-Midwives (ACNM) Midwives Connection. Walker has interviewed leading researchers, clinicians, and advocates such as Katherine Wisner, Cheryl Beck, Michael C. Lu, Karen Kleiman, Pec Indman, Liz Friedman, and Katherine Stone. Walker was a certified birth doula (DONA), and the founding President of PATTCh, an organization founded by Penny Simkin dedicated to the prevention and treatment of traumatic childbirth. Walker is currently the Program Co-Chair for the American Psychological Association (APA) Trauma Psychology Division 56. She is writing a book regarding her grounded theory study on the transformational dimensions of postpartum depression. Walker is an 11 year breast cancer survivor, and lives in Sherman Oaks, CA with her two children and husband.