COVID has focused attention on the frontlines. 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 illnesses 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, 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 asymptomatically, every child I treat is a potential danger. The result is ever-present fear of contagion. A special kind of vulnerable fear. 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. To keep functional, I rely on regular procedural interventions. Those have been put on hold since the Massachusetts Department of Public Health shut down elective 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 outings, which involve a lot of walking. The department of public health has ruled there are no visitors 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 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 if my husband was my PCA. Finally, we were allowed in, but the whole experience was ableist and aggravating. The new rules and regulations made to react to the pandemic have often been hastily made and not considerate of those with disabilities.
How people access health care 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 via telephone. 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. 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. Multiple state guidelines on who gets a ventilator have led to a lawsuit being filed with 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.
Heather Finlay-Morreale is a pediatrician and can be reached on Twitter @FinlayMorreale and can be reached at Thoughts on Pediatrics.
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