Today, PPMD joined over 400 patient organizations in a letter led by the American Association of People with Disabilities (AAPD) urging the Department of Health and Human Services (HHS) to issue further guidance addressing the application of federal non-discrimination laws to plans to ration scarce health care resources during the COVID-19 pandemic.

While HHS has previously issued a bulletin on this topic, advocates say additional guidance is necessary. The letter called upon the HHS Office of Civil Rights to provide guidance clarifying, among other things, that federal law prohibits states and health care providers from making treatment allocation decisions based on assumptions that an individual’s disability or age will lessen the possibility of survival beyond the short-term or require the use of greater treatment resources.

As always, the PPMD team continues to represent the Duchenne community on the frontlines, 24/7 to help protect our families, not just during this global pandemic, but every day until the day we end Duchenne.

Read the Letter

Dear Secretary Azar and Director Severino:

Representing millions of patients, people with disabilities and older adults, our organizations are writing to express our strong and urgent support for the Department’s Office for Civil Rights to issue additional guidance to ensure that schemes to ration scarce health care resources during the coronavirus disease 2019 (COVID-19) pandemic comply with federal nondiscrimination laws.

As you are aware, many states and hospitals plan to rely on Crisis Standard of Care plans to inform providers how to make decisions on the allocation and re-allocation of scarce medical resources. Too many of these plans, however, discriminate based on disability and age, devaluing the lives of people with disabilities and older adults.  If implemented, they would deny life-saving treatment to people based on disabilities or age that have nothing to do with their ability to benefit from care and survive COVID-19. This violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act, and the Age Discrimination Act.

It is essential that the federal government provide guidance to states and health care providers setting forth clear requirements to ensure that the health care rationing decisions comply with federal nondiscrimination laws. We greatly appreciate the guidance that has already been issued by the Office of Civil Rights (OCR) in its March 28, 2020 bulletin. But significant confusion remains in the health care provider community. As states move forward with rationing plans in the face of imminent shortages of ventilators and other supplies, hospital beds, and staff, it is urgent that you issue additional guidance.

Additional guidance should clarify that federal law prohibits treatment allocation decisions from being made based on assumptions that a person’s disability or age will diminish the person’s prospect of survival beyond the immediate term or require the use of greater treatment resources. It should clarify that allocation decisions based on “life years,” life expectancy, or prognosis beyond short-term survival discriminate against disabled people and older adults. It should clarify that reasonable modifications must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment. These may include interpreter services, modifications such as increased baseline times for responsiveness to treatment, or additional services needed due to a disability.^[1] Similarly, OCR guidance should clarify that federal law prohibits age-based categorizations that penalize older adults by making them automatically ineligible for life-saving care without any individualized assessment.

We agree with the National Council on Disability, which urged OCR to issue clear guidance on these issues and “to maintain robust enforcement activities, including investigations of complaints, and to remind the public in every one of OCR’s communications how they can file such complaints,” and recommended that HHS, “at every opportunity and through each one of its divisions and offices, include standardized language in each of its communications, no matter the topic, regarding civil rights obligations and the steps by which an individual may file a complaint if they believe their civil rights have been violated.”^[2]

We also strongly recommend that OCR advise states and healthcare entities of their obligation to maintain data concerning the administration of health care rationing, including accurate tracking of the numbers of persons admitted to hospital, the number who receive ICU for COVID-19 treatment, the number who are denied care or transferred to palliative care only, the number who recover, and the number who die, including disaggregated information about these individuals’ racial, ethnic, gender, and disability status, and whether they were receiving life-sustaining care or palliative care only based on rationing at time of death. Lives have been and will be lost to COVID-19. We owe it to those lives to learn how to better our society and healthcare system’s response to a pandemic, and we cannot achieve improvement without accurate data.

We are pleased that Congress shared its intent that civil rights laws be upheld in this crisis in a bipartisan and bicameral manner in a March 25, 2020 letter to Secretary Azar and Attorney General Barr, stating:

In light of the COVID-19 pandemic, we urge your Department to act quickly to notify states that as they review and create their “crisis standards of care,” they must not authorize or promote any form of disability discrimination that would violate the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. This would include incorporating denials of care, lower prioritization of care, or denial of or limitation of healthcare resources on the basis of one’s disability, severity of disability, need for resource-intensive services and supports, or the perception of a lower quality of life on the basis of disability.^[3]

The policies and guidelines in a significant number of states deny or give lower priority for life-saving treatment to the people with disabilities and older adults that we represent, including  those that are the subject of complaints filed with OCR.^[4] Policies across the country give people with disabilities and older adults good cause for alarm.^[5]  We rely on you and your leadership to ensure that the United States lives up to its promise of equal opportunity, nondiscrimination and civil rights of all human beings, especially during times of crisis. Therefore, we look forward to your further guidance and continued enforcement of our civil rights laws.

^[1] See Letter of March 20, 2020 from Consortium for Citizens with Disabilities Rights and Health Task Force Co-Chairs to Secretary Azar and Director Severino, http://www.c-c-d.org/fichiers/Letter-re-COVID-19-and-Disability-Discrimination-final.pdf.

^[2] https://ncd.gov/publications/2020/NCD-letter-response-ocr-bulletin-civil-rights-hipaa.

^[3] https://chrissmith.house.gov/uploadedfiles/2020-03-25_bipartisan_bicameral_letter_to_hhs_and_doj_-_covid-19_and_disability_discrimination.pdf.  A number of Senators sent a second letter on April 9, 2020 reiterating this view.  https://www.warren.senate.gov/imo/media/doc/2020.04.09%20Letter%20to%20HHS%20OCR%20re%20Rationing%20of%20Care.pdf.

^[4] https://www.centerforpublicrep.org/covid-19-medical-rationing/.

^[5] https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators.

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