RARE Daily

Advocacy Groups Ask Agencies to Protect Civil Rights of Rare Disease Patients in Pandemic

April 27, 2020

Rare Daily Staff

More than 400 patient groups, disability rights organizations, and advocates for the elderly have signed a letter to U.S. Secretary of Health and Human Services Alex Azar and U.S. Office for Civil Rights Director Roger Severino calling on them to take steps to ensure hospital plans to ration resources during the COVID-19 pandemic comply with federal nondiscrimination laws.

People with chronic health conditions including rare diseases are at heightened risk of developing serious complications from COVID-19 infections. But as providers draw up plans for how they might apply scarce resources should they become overwhelmed with infected patients, advocates fear that too many crisis plans contemplate denying life-saving treatments to patients because of age or disability.

The letter echoes concerns expressed in a letter from Congress to Secretary Azar and Attorney General Bill Barr at the end of March urging them to take steps to ensure that civil rights laws are upheld during the pandemic and that crisis standards of care not promote disability discrimination, including denials of care, lower prioritization of care, or denials or limitation of resources because of disability or the perception of a lower quality of life.

The organizations, which includes the National Organization for Rare Disorders, said even though the Office for Civil Rights (OCR) issued guidance at the end of March, significant confusion remains among providers as states prepare for shortages of ventilators, beds, personnel, and needed supplies.

“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,” the letter from the patient organizations said. “Policies across the country give people with disabilities and older adults good cause for alarm.”

Photo: U.S. Secretary of Health and Human Services Alex Azar

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