The burden of disease.
The cost to society.
That is how my life is measured – in dollars and cents.
It plays out in the news and health policy with sensational headlines like: The High Price of Failing America’s Costliest Patients.
And every time I see such a headline, it makes me feel like I am a drain on society. I am a burden. My very existence costs society, a detriment to society by these measures.
The global burden of disease (GBD) is a measurement used to describe the impact disease has on society. GBD is measured by looking at the disability-adjusted life-year (DALY) or quality-adjusted life-years (QALY), which, according to the World Health Organization (WHO) is essentially “the years of life lost due to time lived in states of less than full health.” Ultimately, it is used by policy wonks to justify public health action. As the Canada’s National Collaborating Centre for Infectious Disease explains why we should care about the GBD, explaining:
In a world affected by numerous diseases, disabilities, and illnesses, how do governments, health care providers, media, or the general public decide which ones are most important? If a disease strikes close to home, everyone affected will naturally consider that condition to be of utmost importance. But public health practitioners and policy-makers have a responsibility to ensure the health of all. As a result, they must be able to evaluate the relative importance of disease and disability for the entire population. Understanding which diseases pose the greatest threat to health and wellbeing helps public health practitioners and policy-makers decide how to use limited resources for maximum benefit. They can plan interventions and deliver services to enhance prevention, control the spread of disease, improve disease outcomes, and reduce health inequities—unfair differences in risk that lead to differences in health outcomes between individuals and populations.
The complexities of the calculation of GBD and how it impacts policy can be discussed another time as it greatly affects health as a human right. But for now I bring up the term only to make the point that it is indeed a calculation, a measurement, a quantifying of a human life. And unfortunately, that calculation is imbued with negative connotation.
The headlines read that my illnesses cost society, or that helping me would mean I would cost society less. They do not read that I am suffering and that my life would be valuable even if I never get better.
The headlines read that I am a “superutilizer”of services (another euphemism for costly) and talk about potential earnings that I miss. They do not read that I am using services to stay alive or how hard I am working everyday to get by.
The sum total of measurements like the GBD, is that my life is pricey and I am literally a burden on society.
I know that this rhetoric and these numbers can prompt policy makers and the public to take action more than my individual story. In 2015, the former director of the National Institute of Mental Health (NIMH) wrote:
The World Economic Forum, recognizing that chronic non-communicable diseases would be the largest cost drivers in health care in the 21st century, asked a group of health economists to estimate global costs and project costs to 2030.13 Their estimate based on 2010 data showed mental disorders as the largest cost driver at $2.5 trillion in global costs in 2010 and projected costs of $6.0 trillion by 2030. The costs for mental disorders were greater than the costs of diabetes, respiratory disorders, and cancer combined.
The Substance Abuse and Mental Health Administration estimated that the U.S. national expenditure for mental health care was $147 billion in 2009. Combining this figure with updated projections of lost earnings and public disability insurance payments associated with mental illness, an estimate for the financial cost of mental disorders was at least $467 billion in the U.S. in 2012.14
Numbers like $467 billion, $2.5 trillion, $6 trillion are truly astounding. And if we can address the illnesses that make up those numbers and save even a little of that money, society feels they’ve accomplished something.
With my background in economics and health policy, I get why people want to measure disease as such. But what cost do these numbers and this rhetoric have on the person with the disease.
When I read these numbers, I feel like I am at fault for costing society so much and not being able to monetarily give back. I read these numbers and hate myself for not being well. I read these numbers and feel a society that judges me for what I take. I read these numbers and feel they are quantifying my worth to the world, a calculation that is always negative. I read these numbers and feel deep shame. I feel worthless.
It is important to acknowledge what is lost due to illness. But I wonder whether we could reframe the phrasing. What terms might we use instead of “burden” to define a life with illness? What terms might we use instead of cost to spur innovation and health policy changes?
I honestly don’t know having been steeped in this language for so long.
But I would really like to stop being seen and talked about as a burden to society, because honestly it adds to the justifications in my mind for why I should not be alive at all.