Since the beginning of the pandemic, health care professionals have been concerned about the possible lack of sufficient life-saving equipment, specifically ventilators, to meet the increasing demand due to surging COVID-19 cases. In the last few months, in response to this concern, some states and medical professionals have developed protocols for rationing acute medical care in the event of a limited supply. Many of these plans include criteria based on disability, and have the effect of discriminating against people with disabilities in violation of Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act, which prohibit discrimination on the basis of disability in HHS-funded health programs or activities.
The Center for Medicare Advocacy has been involved in a coalition effort, along with disability rights advocates and advocates representing older adults, to ensure that, if the current pandemic results in decisions to ration treatment, allocation decisions are made without discriminating based on disability or age.
The advocacy community was encouraged when the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) released a bulletin on March 28, 2020 reiterating that discrimination on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion in HHS-funded programs is prohibited. (See CMA Alert on the bulletin).
The bulletin stated:
The Office for Civil Rights enforces Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which prohibit discrimination on the basis of disability in HHS funded health programs or activities. These laws, like other civil rights statutes OCR enforces, remain in effect. As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.
While some state guidelines were blatantly discriminatory, others may appear to be neutral but in reality perpetuate health disparities. A recent article in the New England Journal of Medicine examines this issue of “neutral” language having discriminatory effects. It points out that systemic racism and inequities that lead to worse health outcomes and higher chronic disease will result in some patients having a lower health expectancy “score” under certain commonly-used standards. Those patients will then be less likely to receive life-saving treatment in a rationing situation.
In effect, CSCs [crisis standards of care] that deprioritize people with coexisting conditions or with a higher likelihood of death within 5 years penalize people for having conditions rooted in historical and current inequities and sustained by identity-blind policies. In the United States, black, poor, disabled, and other disadvantaged people have shorter life expectancies than white and able-bodied Americans. If maximizing life-years is the prime directive, their lives will be consistently deprioritized as compared with already advantaged groups.
The Center for Medicare Advocacy is currently part of a coalition focused on the Massachusetts Crisis Standards of Care. Along with our colleagues at Justice in Aging, Greater Boston Legal Services, the Center for Public Representation, and others, the coalition has identified several age-specific issues with the state’s guidelines, including the omission of age as a protected characteristic. The coalition is currently working with the state and is hopeful that new guidelines will protect all patients.
Guidelines in California and New Hampshire reflect input from disability and aging groups and can be used as models for other states to avoid discrimination and give appropriate attention to health inequities.
The Center will continue to monitor and join in these efforts, particularly as many health experts express concern about new waves of infections in some states. Moreover, experts warn that flu season, coupled with continuing COVID-19 infections, could put a major strain on already overwhelmed hospitals and equipment later this year. If rationing of care must occur, it is important that allocation decisions are not made on the basis of age, disability, or other protected characteristics.
The Center for Public Representation is an excellent resource on this issue, with links to analyses, civil rights complaints, and advocacy letters.
July 16, 2020 – K. Kertesz