Long-standing problems within our health care system are being magnified during the COVID-19 pandemic. The historical lack of access, implicit bias and structural barriers to care are worsened, as is our limited capacity to care for people with complex needs. These failures have intensified the deeply disturbing and often deadly reality for many communities across the country. Those in the disability community, many ethnic minority communities, those with chronic conditions, individuals with low or fixed incomes, and other groups lacking access to needed care face some of the most difficult challenges.
First, without exception, United States of Care believes now is not the time to set aside moral and ethical principles. As treatment resources are scarce, decisions which value one life over another have no place in this country. This pandemic amplifies many existing somber realities for us as a nation. But it also provides us with the opportunity to live the principles we as a nation claim to value. How we face the reality of limited resources, continue to fight for access for all, and respond to this current pandemic will illustrate who we are as a nation, and how we care for and value those who are the most vulnerable.
This piece highlights the historical inequities and lack of access in our health care system that the pandemic has shed light on. I acknowledge that this piece only highlights parts of the story, and doesn’t speak to the reality for many communities.
A recent article in The Atlantic, “Americans with Disabilities are Terrified,” paints a picture of a community – people with disabilities, often with chronic conditions – not only afraid of contracting COVID-19, but also now unable to access regular medications and treatments. Peter Morley, a member of our Founder’s Council and self-described patient advocate, cancer survivor, and lupus warrior, shared the following with me: “The mental anguish of having limited access to medication I’ve been on for 6 years is extremely stressful. I’ve been limited to 30-day vs. 90-day refills.” Peter is referring to the drug, Hydroxychloroquine, used to treat people with lupus and rheumatoid arthritis which is being explored as a preventive or treatment for COVID-19, though there are questions of whether this drug is effective in treating COVID-19. In the meantime, this new national interest has led to a shortage across the country for people who rely on the drug.
There is also a concern that limited resources may lead to the denial of appropriate medical treatment because of overt systemic discrimination, and implicit personal bias. This includes worst-case fears that rationing policies will take away ventilators from people who use them to live on a daily basis. Ari Ne’eman recently wrote, “People with disabilities have a long and complicated history with the medical profession. While many disabled people need ongoing medical care, many doctors view life with certain disabilities as unworthy of living. Disabled people who require ongoing ventilator care and other forms of expensive lifelong assistance are used to being asked by medical professionals if they would rather abandon life-sustaining treatment — often with the clear implication that “yes” is the right answer.”
United States of Care strongly believes that relying on approaches that place a lower value on the lives of people with disabilities and chronic conditions to determine access to ventilators or medical resources is an unethical and unacceptable form of rationing.
USofCare Founder’s Council member, Dennis Heaphy, raises concerns about rationing expressed by many when he states “persons with disabilities, chronic conditions and elders are at risk of being denied access to care by policymakers, insurance companies and healthcare systems that use Quality Adjusted Life Years (QALYs). QALYs determine the cost-effectiveness of medications and treatments in a way that places a lower value on treatments that extend the lives of people with chronic illnesses and disabilities.” To address these concerns, a coalition of advocacy groups have filed complaints against several states that use “presence of disability” as a factor to determine access to care.
Dr. Lisa Fitzpatrick, also a member of our Founders Council, sounds the alarm for another community – the “48 million living below the poverty line and the tens of millions more who are one paycheck away from it” (Forbes, “Coronavirus and the underserved: We are Not All in this Together”). Her article forces the reader to ask hard questions: What happens to the underserved – black and brown people – who traditionally face health inequities and battle chronic conditions? How is this intensified for those who work out of the home during COVID-19 pandemic? The “grocery store clerks, truck drivers” and others who can’t stay indoors, increasing their risk of infection? Or the people experiencing homelessness? Are they worthy of care and resources? The recent stark news showing greater morbidity and mortality rates among African-Americans across the country — including in Chicago, New Orleans, Charlotte, NC and Milwaukee, WI — highlights the importance of these questions.
Over the weekend I spoke to an individual who advises United States of Care (who wishes to remain anonymous). This person has immunocompromised health and, like many, is an essential worker whose role cannot be fulfilled at home. They stated, “I am a little nervous – we went from 4 employees testing positive to 39 people in 1 week. We aren’t being told specifics, or if we should be tested or go on self-quarantine. As someone who has an immunodeficiency disorder, I worry every day when I have to report to work. There is no requirement for notifying us if others have COVID. The thought of bringing this home to my family is what is most frightening for me.”
We must act according to principles that place the same value on every life without apology or fear. This shared virus means we have a shared responsibility to all people, especially the most vulnerable.
The inequities described above are not new. Our health care system has historically struggled to provide equitable care. However, work is being done to imagine and transform the system. United States of Care partnered with entities in Minnesota last year to conduct a Health Equity Feasibility Study, which resulted in a Health Care Systems Transformation Framework. When this pandemic settles and our health care infrastructure is rebuilt, inequities especially those that presented themselves through this crisis should be at the forefront of the discussion.
For more information and resources from USofCare regarding the COVID-19 pandemic, please visit our resource hub, including our dynamic State checklist on combating COVID-19, and our recommendations to Congress.