Quality Adjusted Life Years and Autism
The Quality-Adjusted Life Year (QALY) is a measure of the value and benefit of health outcomes for the standardized human in western health economics.
According to Physiopedia, the Quality-Adjusted Life Year (QALY) is a measure of the value and benefit of health outcomes. It is used to guide / inform health policy and is accepted as an outcome measure in health economics.
QALY defines health as a function of two components:
Length of life - i.e. mortality
Quality of life - i.e. morbidity
The QALY is thus an attempt to combine these two attributes into a single figure/number … for the standardized human living within a “modern” or “western” capitalist context.
The theory behind the QALY is that it is meant to provide an idea of how many extra months or years of life of a reasonable quality a person might gain as a result of treatment (particularly important when considering treatments for chronic conditions) ... or, as we saw during the pandemic, it helps the administrative state determine the value of human life in relation to the rationing of health care.
During the pandemic, an increasing number of western countries and their medical facilities created triage plans that recommend who should and should not be allocated lifesaving care. People with intellectual disabilities, and this includes the spectrum of neurodiversity, discovered with horror that they are at the bottom of this list.
Decisions as to who is and who is not worthy of medical care are being made in light of the CDC declaring that people with disabilities are at higher risk for experiencing severe illness due to COVID-19. Decisions are also being made in light of the concept of Quality-Adjusted Life Years, a concept and supposed equation discussed by the World Health Organization and others to determine how much less disabled people’s lives are worth than their non-disabled friends, neighbors, and family members. In their 2016 paper on Guidance for Managing Ethical Issues in Infectious Disease Outbreaks, the World Health Organization states: “In general, the focus should be on the health-related benefits of allocation mechanisms, whether defined in terms of the total number of lives saved, the total number of life-years saved, or the total number of quality-adjusted life-years saved.”
Ari Ne’eman, a disability rights advocate and an expert on QALYs, described to the National Council on Disability what QALYs are and what they do. It was published in their 2019 report delivered to the President. “The QALY works by weighting the lives of people with disabilities: If we were to assign autism a disability weight of 0.2, that [number] would mean that a year in the life of an autistic person would be worth 80 percent of a non-disabled person’s life. Different disabilities would get a different number, if you assigned 0.5 to a mobility impairment, then a year in that person’s life would equal 50 percent of a non-disabled life year.”
As an autistic adult, parent, and professional, who happens to have a chronic disease (erythromelagia), I am here to say that my life provides just as much value to the world as yours does. My autism system does not affect my respiratory health or immune system, but Quality-Adjusted Life Years legally values me as less of a person. But, as a point of fact, my management of erythromelagia and histamine intolerance (via a species-specific nutritional plan) actually enhances my immune response and fitness profile.
In this country (USA), where “all men are created equal,” the medical and insurance oligarchs beg to differ. In reacting to this issue, I’ve seen many self-advocates fall into the eugenicist’s trap … seeking to justify their existence. Here, I will do no such thing.
You see, all humans are born equal, endowed by their creator with the absolute right to life. It is the vile system of commodification and artificial scarcity that seeks to reduce us to a statistical value. Don’t fall for it.
There’s a sinister game being played that seeks to maximize “outputs” as well as profits. Don’t fall for it. Educate yourself on how the QALY metrics intersect your life. As your medical provider. Ask your city’s leaders. Look into your nation’s policies. Then, decide if what you’ve found disadvantages you … like it does me. Next, spread the word. Demand change towards an equitable system that treats all humans as … well … human.