NDY member Carol Cleigh’s timely and pointed letter below will appear in her local North Carolina paper, Clay County Progress:
W. Carol Cleigh
For those who are advocating for lifting of restrictions due to Covid-19 before or without considering the WHO criteria for safely lifting those restrictions, please understand that you’re asking for a devil’s bargain. What you, and so many others, are actually doing is to say that lives, particularly the lives of elder, disabled and chronically ill people, are less important than money. This is literally, the sacrifice of the weak for the wealthy.
You can dress up your ‘need’ to sacrifice our lives however you want. Yes, people, especially the most economically disadvantaged, need to work. But do they need to work more than we need to live? Yes, people need social interaction. But do you really need social interaction more than we need to live? Yes, the economy must be reopened eventually. But can’t we concentrate on actually meeting at least a few of the WHO criteria rather than ignoring them?
Understand that we’re not talking about a few people. We’re talking about numbers similar to the T4 program’s extermination of ill and disabled people during the Holocaust. Even White House estimates put the cost of premature reopening at more than 230,000 human beings. Not all of whom will be old, ill and/or disabled. Many will be health care workers. Some will be young. Some will have been healthy before becoming ill. Georgia has already had a surge in cases.
Perhaps most importantly in all of this is the question of who we want to be as a people. I’ve even seen advocates for this trying to dress up their devil’s bargain in Jesus’ clothing. Stop it! Quit lying to yourself. If you feel that sacrificing hundreds of thousands of human lives to expediency is something you’d like to see happen, know that you are very definitely not on the side of Jesus. If you want to advocate for those whom Jesus loves, advocate for meeting the WHO criteria, not ignoring it. Advocate for life.
The following is expanded from remarks prepared for oral testimony at the April 22 hearing. I am adding information from the hearing testimony of the Massachusetts Coalition on Health Equity. Additional information is drawn from the Bay State Banner article on the hearing.
A hearing on the proposed guidelines for ventilator distribution and ICU beds in the event of a shortage and ensuring that health inequities do not dictate medical care during the COVID-19 pandemic.
BOSTON CITY COUNCIL COMMITTEE ON PUBLIC HEALTH HEARING ON DOCKET #0638 Testimony of John B. Kelly, Director of Second Thoughts MA April 22, 2020
My name is John Kelly, I am the director of Second Thoughts MA, a grassroots group fighting policies and actions that place a lower value on the lives of older, ill, and disabled people. Second Thoughts MA is the state affiliate of the national disability rights group with the same mission, Not Dead Yet, of which I am New England Regional Director.
Thank you Councilors Ricardo Arroyo and Andrea Campbell for bringing this issue before the Council. Thank you for facilitating testimony against any life expectancy criteria determining who does and does not get a ventilator in case of scarcity.
I appreciate the advocacy of groups like the Disability Policy Consortium, Justice in Aging, Greater Boston Legal Services, and others in persuading the state to revise its Crisis Standards of Care to be less discriminatory against older, ill, and disabled people. But the state has not dropped its plan to base triage decision-making on five-year expected survivorship. It must do so.
The use of certain factors correlated with age, such as estimates of number of years remaining and prognosis for long-term survival, discriminate against older adults for receiving life-saving treatment when supply is limited.
A group of doctors, the Massachusetts Coalition on Health Equity, testified at the hearing that the revised guidelines are just a start.
Dr. Martin said that the guidelines still include reference to patient’s “medical history” and “underlying conditions,” which will disparately impact disadvantaged groups.
Anita Cameron, Director of Minority Outreach for Not Dead Yet, recently wrote a blog on the structural racism of our healthcare system
Our Healthcare System is inherently racist. Blacks receive inferior care to that received by whites, particularly in the areas of cardiac, diabetes, and pain management. Blacks are more likely to die because doctors have overlooked something critical or will not listen to or believe what we have to say about our health and pain.
It’s outrageous that minorities with health conditions caused by the system could again be discriminated against in terms of expected five-year survival.
Dr. Onyekachi Otugo, an emergency medicine doctor at St. Elizabeth Hospital, testified that there are thousands of people walking around who were told years ago that they had less than 5 years to live. She emphasized that 5 years is a long time, and that the state must not be differentiating between people in its decision-making.
People with disabilities have stories about our longevity being underestimated and undervalued. For example, the late Harriet McBride Johnson titled her book “Too Late to Die Young,” because doctors had been telling her since she was a child that she would be dying within a few years.
Two years ago, a chest cold led to the collapse of my left lung. I was rushed to Boston Medical Center, intubated and diagnosed with necrotizing pneumonia. It took 3 weeks on a ventilator and dedicated care, but I recovered. It was described as a miracle. If I were to present with similar symptoms in a triage situation, I’m afraid that implicit bias would rate as low my chances of living 5 years. I’m afraid that estimates of my immediate survival would also be biased. Would my previous history of pneumonia count against me? I think my survivorship should count in my favor because my lungs were resilient enough to overcome the odds.
Going forward, the doctors testified that triage protocols must be developed transparently, with public access to real-time data. Dr. Lana Habash, a family medicine doctor at Boston Medical Center, said that there needs to be community oversight, including representatives of people who are uninsured or homeless.
It is hopeful that Massachusetts will avoid a crisis shortage of ventilators, but we must continue to make sure that the voices of marginalized people are reflected in the policies of the state.
Among the rationing plans being discussed to respond to the strain the surge in coronavirus cases is expected to place on the capabilities of hospitals in some cases, the Pittsburgh Model Plan Regarding the Allocation of Scarce Critical Care Resources during a Public Health Emergency (1) is being given the most play. The Plan would prioritize patients for critical care by assessing both the likelihood the person would survive the virus if treated and whether the person has another condition that would seem to cause him to have a life expectancy of less than one year or less than five years even if he did survive the virus.
The Plan in justifying the use of the second measure states, “the allocation framework goes beyond simply attempting to maximize the number of patients who survive to hospital discharge, because this is a thin conception of doing the greatest good for the greatest number.” The Plan is venturing into places it need not go. Everyone knows how beleaguered the health care system is now and that exhausted and distraught health care workers at risk to themselves are doing their level best to save lives. Exactly who thinks the health care community should also be preoccupied about which folks are going to be here five years from now? That is rather utopian – and not in a good way – when so many people are trying to survive the moment.
The Plan seems curiously defensive about disability. Two of three objectives mention disability. They are “to create meaningful access for all patients. All patients who are eligible for ICU services during ordinary circumstances remain eligible, and there are no exclusion criteria based on age, disabilities, or other factors…[and] to ensure that no one is denied care based on stereotypes, assessments of quality of life, or judgments about a person’s ‘worth’ based on the presence or absence of disabilities or other factors.”
Assessments of priority for critical care are to be done by an appointed triage officer and not by the patient’s attending physician who may favor the patient. The prognosis for surviving the respiratory ailment is to be determined by the patient’s Sequential Organ Failure Assessment (SOFA) score. The SOFA score is characterized as an objective medical score, but many have raised questions about built-in biases producing a negative impact on people with chronic conditions. The Plan also factors in a person’s life expectancy. There’s no guidance though on how to determine the patient’s general life expectancy. The triage officer, overworked as she may be and trying to function in chaos, is just expected to be able to tease this out.
Patients will be assigned between 1 to 4 points based on SOFA scores. Two points will then be added if life expectancy is predicted to be less than five years, and 4 points for life expectancy seen to be less than one year. Priority for critical care will be then be given to those with fewer points. (Age is a “tie-breaker” if two people with the same number of points need the same ventilator).
You just need basic math skills to see that a person can get a fairly low SOFA score (meaning the chances of survival are good) and still get knocked to the back of the line if the triage officer believes that the presence of a significant disability will decrease life expectancy. The Plan calls this saving “life years”.
Even in the best of circumstances – and we are not talking about the best of circumstances here – life expectancy cannot be determined with near reliability. (2) People confound doctors all the time and the longer the time frame at issue, the more speculative any determination of life expectancy becomes. It is simply magical thinking to believe that a triage officer, no matter how well intentioned she is, can go from bed to bed and know with any certainty whether a disability or underlying condition decreases life expectancy and by what amount. How is a triage officer to tell much of anything about a man with Down syndrome who may or may not have Alzheimer’s, a woman with a neuromuscular condition who has already outlived her life expectancy by twenty years, a senior citizen with cerebral palsy or a diabetic who uses insulin?
As a group of concerned health care providers wrote when a plan based on the Pittsburgh model was proposed for hard hit Massachusetts, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgements about these patients’ quality of life and deny these patients justice in our healthcare system.” (3)
These plans make no mention of the doctrine of futility. Indeed, the stated idea is not to render any patients ineligible for treatment but, if medical shortages occur, to give some people less priority (which has the same practical effect). Yet, when one reads the Pittsburgh Plan, futility doctrine come to mind. According to the National Council on Disability (NCD), medical futility is an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem “futile”. (4)
There are several approaches to medical futility. As the NCD states, “healthcare providers often harbor stereotypes and misguided quality-of-life judgments about patients with disabilities. These biases and assumptions can and do make their way into medical decisions and, when those decisions involve medical futility, they can have fatal results for people with disabilities. “ (5)
In this terrible crisis, disability advocacy groups have acted nimbly. On March 18, state disability groups warned in the Boston Globe that any attempt to discriminate against disabled people seeking care for the virus would have legal and social consequences. (6) A strong piece by activist Ari Ne’eman appeared in the New York Times on March 20. (7) On March 25, the Disability Rights Education and Defense Fund issued a major statement on the illegality of rationing measures when they result in the denial of care on the basis of disability to an individual who could benefit from it. (8) These efforts have continued.
Of course, we aren’t the only group at risk. As the health care professionals who join disability groups in opposing the proposed Massachusetts standards wrote, the standards “will result in the withdrawal of life-saving care ― including mechanical ventilation ― from a disproportionate number of indigenous people, Black people, Latinx people, other communities of color, elders, immigrants, asylumees, refugees, and those who are undocumented, uninsured, incarcerated, homeless, experiencing poverty, or living with disability.” (9)
Our advocacy helps ourselves and many, many others.
On this day, April 27, 24 years ago, I was at a national disability rights conference in Dallas. ADAPT organizer Bob Kafka called out to me and said, “I’ve got a name for your group,” a group that increasingly seemed to be needed to combat the growing public sentiment that disabled people are better off dead (and society is better off without us). The name Bob suggested was “Not Dead Yet”, based on a running gag in the movie Monty Python and the Holy Grail. On that day, over 40 disability leaders (Justin Dart, Judy Heumann, Marca Bristo and more) signed on to testimony I would give at a Congressional subcommittee hearing two days later. Not Dead Yet had begun.
Today, in the midst of the COVID-19 pandemic, the plague scene from Monty Python and the Holy Grail hits painfully close to home, as an older man is thrown on a dead body cart, protesting he’s “not dead” – yet. Today, we’re seeing countless medical triage policies that would literally throw older and disabled people away. Never has the need to fight for our lives been more urgent.
Our name has a bit of humor as well as a bite to it. Sometimes disability humor can be dark. So, on NDY’s 24th Anniversary, we share the plague scene from Monty Python and the Holy Grail and quote disability humorist John Callahan (1951 – 2010) who said, “Comedy is the main weapon we have against ‘The Horror.’ With it we can strike a blow against death itself.”
[IMAGE DESCRIPTION: Scene from Monty Python and the Holy Grail, a medieval village during the Black Death, men in rags pushing a wooden cart through mud, as one man bangs a pot and calls “Bring out your dead!” Then a young man brings an older man, we assume his father, thrown over his shoulder, but the old man says “I’m not dead” – yet. After a back and forth, the pot banger clubs the old man in the head, and the young man throws him on the cart, and thanks the pot banger for his help.]
Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.
Racial disparities in healthcare have always existed but it’s only been recently that it has been openly discussed as a serious issue in this country. Blacks and communities of color have always known about it because we experience it ourselves, first-hand. Studies show that we receive inferior healthcare compared to Whites. Little by little, the mainstream public is starting to learn. Racial disparities in healthcare are one manifestation of systemic, institutional racism.
Now, enter COVID-19, also known as coronavirus. What started as an outbreak has turned into a worldwide pandemic, with the United States now the epicenter.
As expected, the virus is severely impacting seniors, people with disabilities, poor people and communities of color. From Indigenous nations in New Mexico and Arizona, to Latinx and immigrant communities across the nation, COVID-19 is spreading like wildfire.
The Black community, especially, is being ravaged by COVID-19. We are 12 percent of the U.S. population, yet represent 59% of coronavirus deaths to date.
The numbers are even more stark when one looks at cities or states. Blacks make up 15 percent of the population of my home state of Illinois, yet are 40% of deaths. Blacks are 30 percent of Chicago’s population, but 70% of COVID-19 deaths.
Those scary figures are repeated elsewhere. 70% of COVID-19 deaths in Louisiana are among Blacks, who make up 30 percent of the state’s population. 100 percent of COVID-19 deaths in St. Loius, MO are of Black people.
Why is COVID-19 hitting the Black community so hard?
It is a result, again, of systemic racism. We are more likely to be poor — Black households have a fraction of the income and wealth of White households, even when the education level is the same. We are far less likely to be in positions of management, meaning that we and immigrants are the ones doing the jobs nobody wants, like picking up trash, cleaning public toilets or cleaning up hospital emergency rooms.
We Black folks are more likely to be essential workers – nurses, attendants, hospital technicians, public transit operators, sanitation workers and first responders. That brings us in contact with others who have been exposed to, or who actually have COVID-19. Most do not have access to personal protective equipment like masks, gloves and gowns, necessary to slow the spread of the disease.
Blacks are also more likely to live in poverty and not have health insurance, so when we get sick, we can’t go to the doctor. Since we receive inferior healthcare compared to Whites, especially in the treatment of diabetes, heart conditions and cancer – three conditions that make COVID-19 more likely to be fatal, we are dying at a much higher rate.
Black people are less likely to have access to information and resources. At first, we didn’t believe that COVID-19 was affecting our community. Then we begin to see that our folks were getting sick, but also saw that we weren’t as likely to be tested, even when we were clearly ill. We realized that we were less likely to have access to gloves, masks, food, sanitizer, cars, etc., so we couldn’t go shopping. We often don’t have computers, smartphones or TVs, meaning we were cut off from information on how to protect ourselves and where to go to get food or what agencies were out there to help. We don’t have jobs we could telework from, so we lost them. We don’t have access to the technology for telemedicine, so we’re not getting healthcare unless we go to the emergency room.
Now, due to hospitals being overwhelmed with COVID-19 admissions, medical rationing is being considered in the treatment of COVID-19. This is especially frightening for disabled and seniors – and Blacks and communities of color. Several states have enacted policies where treatment for COVID-19 patients would be reserved for those with the greatest chance of survival, meaning younger, healthier (read nondisabled) patients. Disabled people who use ventilators at home are terrified that if they are hospitalized, their ventilator will be reallocated, taken and given to someone the hospital feels has a better chance of survival.
Though the Department of Health and Human Services’ Office of Civil Rights has issued guidance against discrimination and bias based on stereotypes of race, age and disability, among others, some of that guidance is not clear, and won’t stop medical personnel steeped in their own biases from doing as they wish.
If anything is a wake-up call for people to see what the results of racial bias, discrimination and disparities in healthcare look like, this COVID-19 pandemic is it. Now, add disability.
Black disabled are scared to death, and rightly so. We see panels and talks on what to do, and how to know your rights in medicine during this pandemic. We see White folks (mostly) and some folks of color on panels when Black activists brought it up, but, as yet, virtually nothing is including, or designed by and for Black folks.
Of the major organizations working on the issue of medical rationing and discrimination, few, if any, have Black staff or Black management, so we’re not thought of. As yet, none have reached out to Black activists and organizations in a meaningful way.
COVID-19 is rampaging through nursing homes, psychiatric hospitals, group homes, institutions, jails, prisons, detention centers, all kinds of congregate settings. We know who are likely to be in such places — Black and Brown folks. We know who are likely to work there — Black and Brown people. Who is collecting data? Who is developing plans to get these folks who’ve tested positive for COVID-19 some kind of medical assistance? What groups are making plans to help these people get safe now?
There are some Black folks doing mutual aid to make sure folks in our community eat, have groceries, get information and get emotional support, but we still don’t have the resources that primarily White disabled folks and organizations have access to.
Still, we can’t wait around for mainstream organizations to include us. We must work ourselves to get the word out even more about how COVID-19 is ravaging the Black community. We must insist that the government keep racial data on who gets it, who dies, at what rate and percentage of the city, county, state and country. We must make sure that disabled aren’t falling victim to medical rationing or mistreatment based on race, age and type of disability. We must insist that our first responders and front line workers are safe.
Black disability organizations, Black community organizations, Black LGBTQIA2S+ organizations, Black medical organizations, Black media, senior groups, justice reform groups, immigrant rights groups, organizers, activists, youth, artists, griots, storytellers — let’s all get together and help each other during this age of COVID-19. Form our own medical rationing panels and do the work. Do our own research on racial disparities in healthcare during COVID-19 and not only get the word out, but work against it. Work to get funding and resources, particularly for disabled folks now. Tell our own stories. In doing this for us, we actually help not only ourselves, but our country.
