Focus on the Frontlines Leaves Behind the Disabled
Focus on COVID leaves behind those with disabilities and chronic illness
Posted May 23, 2020
The COVID pandemic has focused attention on those on the frontlines and COVID patients. However, this focus ignores those with chronic health needs and disabilities.
People with these conditions are left unable to continue their care or to seek care for new exacerbations. People are avoiding the ER and dying at home. Needed surgeries are postponed, leaving patients with continuing pain and disability. And for many, a fear exists of not only acquiring COVID-19 but of being denied a ventilator due to prejudicial views about the value of a disabled life.
People with chronic health conditions are frequently at a higher risk of severe illness from COVID. Some are able to isolate at home, but many are not able to avoid exposure to others. Some have workers coming into their homes to assist with care or to deliver groceries. For example, I have had four different infusion nurses in my home this month, some of whom also work in emergency rooms with COVID patients.
In an online IVIG forum I participate in, some patients have discontinued their therapies due to not wanting to be exposed to this risk. Others, like myself, are both persons with disabilities as well as essential workers. I work as a pediatrician, and since children often carry the virus asymptomaticly, every child I treat is a potential danger. The result is fear of contagion when out in the world or even at home—a special kind of vulnerable fear that is new since the start of the pandemic. I wash my hands like my life depends on it—and it does.
I have autoimmune neuropathy and multiple forms of neuralgia, a severely painful nerve condition. In order to keep working, I rely on regular pain-clinic interventions, including botox injections, nerve blocks, and epidurals. Those have been put on hold since the Massachusetts Department of Public Health shut down elective surgeries and procedures.
Other patients needing elective procedures are similarly abandoned. For example, those needing hip and knee replacements are left waiting. They face more time waiting in pain and with limited ability to move without pain. But what is meant by elective? Without “elective” pain procedures I am limited in my function at work and home. Surely these interventions don’t seem elective to me. The Twitter profile @AliHell writes that in her state, many pain clinics have closed and only 12 were open for new patients needing care and only five open for telehealth but only for existing patients. There already was a pain crisis and an opioid crisis before the pandemic, and I fear this reduced access to pain procedures is only exacerbating both.
Even at a basic level, entry to medical facilities has become challenging for those with disabilities. I at times use a wheelchair, especially for trips to hospitals that involve a lot of walking. The state department of public health has ruled that no visitors are allowed in hospitals except for pediatrics and maternity. I approached the screeners at the hospital being pushed in a wheelchair by my husband. They gave us new masks and took our temperatures, and then we were informed that my husband was not allowed in. They did not offer to have a staff member push the wheelchair; I am not sure what their solution was. I had to repeatedly insist that people in wheelchairs are allowed an exception for someone to push them. Then the screener began quizzing me on whether my husband was my PCA. Finally we were allowed in, but the whole experience was ableist and aggravating. The new rules and regulations made in reaction to the pandemic have often been hastily made and not considerate of those with disabilities.
Not only are those with chronic illness afraid, but many people are afraid of any contact with the medical system. The few parents that call my office do not want to bring their children in to be seen. They do not want to go to the ER. I had to strongly urge one reluctant parent whose child had numerous signs of a severe condition to go to the ER. In addition to working in a pediatric office, I also work in the urgent-care part of the ER.
In the winter, pre-COVID, usually all 13 beds in the pediatric ER are full, plus at times 15 in the waiting room. Yesterday there were three pediatric patients in the ER in total. One of the pediatric ER attending physicians noted to me that children with chronic conditions usually present to the ER for several predictable reasons—g-tube issues and patients with sickle cell and cancer who develop a fever. These chronically ill children are absent from the ER. Did they stop having complications or are they simply staying home?
While working in the ER I sit across the table from the adult physician. It has been quiet for the adult providers as well. The people with back pain, tooth pain, and abdominal pain are simply not presenting to the ER in the same numbers. There is a 40% reduction in people getting care for heart attacks. People are having symptoms and deciding to ignore them. Perhaps some of these issues can be ignored, but patients are not always the best judge of the acuity of their complaints. Abdominal pain can be an appendix about to burst, and back pain can turn out to be a life-threatening aortic aneurysm. Have people simply stopped having non-COVID medical issues? I doubt that is the case; rather, people are choosing to stay home and endure symptoms at great personal risk.
In part, due to decreased use of medical services, there has been an increase in deaths at home. ProPublica reported this month this is occurring in several parts of the country. Some may be COVID deaths, where people were overcome before seeking medical care. Others, I suspect, are people with exacerbations of chronic illness or new acute issues that simply did not get medical care. I argue that these deaths should also be included when counting COVID fatalities.
How people access healthcare has changed due to the pandemic and in a way not equally accessible to all. Telehealth was quickly launched by many organizations, and people are seeing their doctor by video screen. For some with disabilities, this is a benefit. I was recently able to telehealth a specialist I usually have to drive over an hour to see. I appreciated the easier access, especially since long car rides are challenging for me.
However, video telehealth leaves behind those with no access to smartphones or those who have difficulty using new technology. An elderly patient with vision issues is unlikely to be able to set up an app for video visits. Although telehealth has some advantages as far as convenience, the lack of a physical exam is a significant limitation. For example, I have been having chronic ear fluid and an infection that ruptured my eardrum. I was able to telehealth with an ENT; however, an ear exam cannot occur for weeks. Telehealth has some benefits but also clear drawbacks.
Finally, what I believe is the biggest fear of those with chronic illness and disability is the predicted ventilator shortage. States' guidelines on who gets a ventilator have led to the filing of a lawsuit against the federal government, arguing against discrimination against the disabled in the allocation of COVID-related resources. My state’s guidelines were just revised after uproar from the disabled community. Numerous people in wheelchairs or with blindness or other disabilities have fulfilling and active work and home lives. I still fear eugenics in the decision about who gets a limited resource based on judgments about the value of a disabled person’s life. If it comes down to a competition for a vent, where would I end up?
Overall, life as a person with chronic illness or disability has only gotten harder with this pandemic. Fear and lack of medical care and resources are the new status quo. The inequality gap between the disabled and abled has only widened.