“Summertime and the livin’ is easy”; but summertime is not easy for us as we are faculty in courses in which “levels” of prevention,” a common but ableist framework for designing prevention in public health is taught, and we are concerned about the harmful impact on students.
Historically, a three “levels of prevention” framework was adopted by the Commission on Chronic illnesses in 1957 The “levels of prevention” were later developed into five levels. In this framework primary prevention is conceived as being for “healthy people” and is aimed at efforts to prevent disease, disability, and injury. Secondary prevention is conceived as being for “healthy appearing” people and is aimed at early detection of disease through efforts such as screening and at early treatment to reduce progression. Tertiary prevention is conceived as being for people who are “symptomatic” and is aimed at rehabilitation and efforts to assist people to accommodate to disease, disability and injury with focus on quality of life. In 1978, the concept of primordial prevention was developed which is aimed at addressing risk factor reduction for the entire population. In 1986, the concept of quaternary prevention was developed which is aimed at identifying and protecting people at risk of over-medicalization and over-use of medical procedures.
The “levels of prevention” framework relegates the more than 25% of adults and more than 4% of children who have disabilities and the more than 50% of adults and 40% of children who have chronic conditions to only needing tertiary prevention. It is concerning that ableist frameworks such as “levels of prevention” led to health systems failing people with disabilities in the early period of COVID 19 and that they faced devastating consequences of high rates of contracting and dying from COVID along with violation of their civil rights. With this framework, it is not surprising that people with disabilities have less access to preventive services and health promotion, less access to health care, and are more likely to be diagnosed in later stages of cancer than people without disabilities. It is not surprising that there has been little or no detectable change in a Healthy People 2030 specific objective to reduce the proportion of adults with disabilities who delay preventive care.
The “levels of prevention” framework comes from the same conceptions as the current – considered as ableist – mission statement of the National Institutes of Health (NIH) to “seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability”. The assumption in this statement is that people with disabilities are, by definition, unhealthy and not capable of benefiting from efforts to enhance health and lengthen life. In 2023, NIH began a process to change this mission statement.
Public health professionals have spoken out about the field’s contributions in perpetuating ableist practices and acts. Christine Mitchell, a public health researcher and advocate, argues that “If we – as a field – claim to care about health equity, we must listen to and learn from disabled people in a consistent, respectful, and sustained way and we must center disabled people in our policies and practices.” Interprofessional healthcare students are taught that having a disability is intrinsically a negative health outcome that must be eliminated and cured instead of working proactively to dismantle ableism as a determinant of health, further stigmatizing disability.
We realize that many educators still teach “levels of prevention” because they know the importance of prevention. They likely have not considered the harmful impact of relegating people with disabilities to tertiary prevention. However, when the ableist and uninformed language of educators is combined with an overall lack of curricula regarding effectively working with people with disabilities, health care professionals will continue to contribute to health inequities for people with disabilities.
“Levels of prevention” are not referenced or used in Healthy People 2030. In efforts for inclusion the Centers for Disease Control holds that people with disabilities should equally benefit from prevention and health promotion as people who do not have disabilities. The NIH has proposed an inclusive new mission statement to “seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.” It is time to give up the outdated and ableist conceptions involved in “levels of prevention” and adopt inclusive concepts of prevention not based on pathologizing disability and denying their needs for all preventive care services.
