Disability rights groups file federal complaint alleging NC’s proposed plan leaves people with disabilities to shoulder disproportionate load.
If a spike of COVID-19 cases overwhelms North Carolina’s hospitals, communities of color, those living with disabilities, and elderly residents could be disproportionately shut out of life-saving treatments.
That’s the fear for several disability rights groups, including Disability Rights North Carolina and The Arc of North Carolina. The groups filed a complaint in early May with the U.S. Department of Health and Human Services’ Office of Civil Rights over the Protocol for Allocating Scarce Inpatient Critical Care Resources in a Pandemic. The proposed protocol was developed by stakeholders in the state’s healthcare networks in hopes it would be incorporated into the state’s emergency plan by Gov. Roy Cooper.
The protocol could “leave North Carolina’s disability community to shoulder an avoidably disproportionate share of the pandemic’s death toll,” according to the complaint.
Care Factors in Pre-Existing Conditions
If the state finds itself in a worst-case scenario where hospitals are overrun with COVID-19 cases, the proposed plan would take a person’s underlying health conditions into account when deciding who does and doesn’t get healthcare.
This plan would have a higher impact on Black North Carolinians, who are twice as likely than white residents to die from diabetes complications or kidney failure, and endure higher cancer, heart disease and stroke mortality rates than their white neighbors, according to a 2018 health inequities report. These health disparities are caused by a combination of factors, including access to care, the prevalence of poverty, and bias in healthcare settings.
“There is no legal basis for choosing a life that might last five years beyond COVID and a life that might last 15, and that’s what this policy does,” said Corye Dunn, Disability Rights North Carolina’s director of public policy.
Gov. Roy Cooper has yet to formally adopt the 10-page protocol, which was developed in March and April in coordination with state health officials by three of the state’s most prominent health care groups – the quasi-governmental NC Institute of Medicine; the hospital lobbying group, NC Healthcare Association; and the NC Medical Society, a doctor’s advocacy group.
His office referred comment to the N.C. Department of Health and Human Services. The state health agency indicated it is concerned about the discrimination accusations raised by disability advocates, a spokeswoman for the agency said.
“Not all of the advocates’ concerns were resolved in the final product, so DHHS felt that it was not appropriate to incorporate it into the state’s emergency plan,” said Kelly Haight Connor, a DHHS spokeswoman.
The federal civil rights office has yet to weigh in on North Carolina’s plan. Similar complaints have been filed in other states, prompting Alabama to change its policy that would have denied care to those with intellectual disabilities. Pennsylvania also revised its policies after the federal health agency’s Office of Civil Rights found the state’s initial plan was discriminatory.
Black, Latinx, Disabled Communities At Risk
The scare resources protocol, if enacted, could end up packing a devastating “one-two punch” given the already disproportionate way COVID-19 has pummeled Black and Latinx residents in North Carolina.
Communities of color have been hit hardest by COVID-19 nationally as well, in part because of existing health disparities and socioeconomic factors that put more people of color in the public-facing jobs made essential during the pandemic.
There’s also been the slow response by the Trump Administration and the Centers for Disease Control and Prevention to acknowledge the health inequities based on race and ethnicity laid bare by the virus, which worsened the problem by failing to trigger warnings and resources in struggling communities.
Both Black and Latino groups are contracting the disease at proportionally higher rates than their white neighbors. Black North Carolinians are dying of the disease at nearly two times the rate of white North Carolinians, according to data from the APM Research Lab.
Latino residents make up more than 40% of the state’s COVID-19 cases right now, though only proportionally make up a tenth of the state’s overall population.
While the state was able to flatten the curve of COVID-19 infections early on in the crisis, the number of COVID-19 cases are continuing to rise, a worrying trend for state health officials. Hospitalizations were at an all-time high this week since the start of the pandemic, though far from what would prompt doctors to ration care.
Disability and civil rights leaders fear, however, that state officials and hospitals would turn to the recently-developed protocol for guidance if North Carolina finds itself in a worst-case scenario with a prolonged spike of serious COVID-19 cases later this summer or fall.
The protocol asks doctors and hospitals to rate each patient on a scale that assesses a person’s chances of surviving COVID-19, as well as any comorbidities, which can be chronic or pre-existing health conditions such as diabetes, Alzheimer’s disease or cancer.
Those pre-existing issues are what’s concerning to civil and disability rights groups, and what they contend would be discriminatory if implemented.
“We are individuals that suffer more from diabetes and high blood pressure and more often than not, our health has been compromised,” said the Rev. Dr. T. Anthony Spearman, the president of North Carolina’s state conference of the NAACP. “We’ve been sounding the alarm for years, but it seems to have taken COVID-19” to bring attention to the issue.
‘We hope and pray never to be in this situation.’
Developing the scarce resources plan was difficult and designed to build equity into it, said Adam Zolotor, president of the N.C. Institute of Medicine, which spearheaded the effort in coordination with N.C. DHHS, the N.C. Medical Society and the N.C. Healthcare Association. The discussions happened as reports came out of Italy, where medical professionals made heart-wrenching decisions about who would and wouldn’t receive critical care, and New York City dealt with its own deadly surge of COVID-19 cases.
“This conversation was uncomfortable for everyone at every stage of the process,” Zolotor said. “We hope and pray to never be in this situation.”
The group sought out input for advocacy groups in the health care realm, including disability rights advocates, to take those perspectives into account, he said. The final result was an attempt to establish a process that would avoid scenarios where a doctor might have to make an on-the-fly decision between two patients, which could inject even more bias into the process.
Rebecca Walker, a professor of social medicine at the University of North Carolina at Chapel Hill’s Center for Bio Ethics, took part in the protocol development. The result isn’t perfect, she said, but it’s a fair attempt at dealing with a situation no one wants to see happen. She compared it to battlefield decisions made by soldiers, who need to make quick calculations about who might best survive when there’s only time and the ability to help a few.
“There’s always, when there are severely limited resources, there is always going to be a tradeoff between the least well-off [healthwise] and saving the most,” she said. “There’s not a way to get around that tradeoff.”
Preventing COVID-19 cases
Allison Mathews, a sociologist at Wake Forest University’s Maya Angelou Center for Health Equity, said that COVID-19’s effect on communities of color is prompting more discussion and action around changing access to care for these communities.
“We know that Black and Latinx communities are less likely to survive the virus because of these kinds of historic and current systems that put them at risk,” she said.
In Winston-Salem and Forsyth County, there’s been considerable work to address these health inequities, including a mobile van that will be headed out to impacted neighborhoods and delivering free health care five days a week, for the next year.
Spending energy, time, and money on addressing the spread of COVID-19, especially in Black and Latinx populations, will go a long way in preventing the worst-case scenario outlined in the protocol from ever happening, she said.
“From an ethical standpoint, we would want to do as much as we can right now from preventing this from happening,” Mathews said. “It’s the measures we put in ahead of time that are going to make the difference.”