In a story written for The Washington Post, Jessica Slice writes about a frightful predicament for patients with chronic illnesses that cause disability. Jessica lives with dysautonomia and hypermobile Ehlers-Danlos syndrome and fears that medical rationing amidst the ongoing coronavirus/COVID-19 pandemic could cause disabled people like to her to be put in danger.
About Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of disorders that affect connective tissue. There are several different types which have varied symptoms and are linked to different genetic mutations. These mutations may be inherited or may appear early in a patient’s development. Symptoms can include loose joints, stretchy skin, scarring, pain, aoritic dissection, scoliosis, and osteoarthritis. Vascular Ehlers-Danlos syndrome is linked to mutations of the COL3A1 gene and is characterized by fragile, transparent skin, thin hair, short stature, fragile organs prone to rupture, distinct facial features, club foot, and joint hypermobility. With no cure currently available, the treatment of these syndromes is supportive and based on symptoms as they appear. Surgery may be utilized to aid joint problems, but results are varied. There is a great disparity in the severity of symptoms; some patients are able to lead fairly normal lives, whereas others may be severely affected. To learn more about Ehlers-Danlos syndrome, click here.
Could the Disabled be Deprived of Life-Saving Interventions?
What first gave her a cause for alarm was reading over the NICE Clinical Frailty Score, a measure used in the UK (which has been revised since it was first made public) to determine which patients get priority for treatment. Unfortunately, the medical systems in much of the world, including the US, were woefully unprepared for the appearance of a global pandemic such as coronavirus/COVID-19. Therefore, shortages of medical equipment of many kinds, including personal protective gear, ventilators, and much more, are commonplace. With the shortages and the massive influx of sick people in hospitals, doctors around the world are making fateful decisions about who gets treated.
Reading over the score was an immediate cause of concern for Jessica because she realized that under the score, patients with chronic illnesses like Ehlers-Danlos syndrome could be lower priority. Unfortunately, similar guidelines in the US are similar. For example, Washington’s guidelines state that the “baseline functional status” of a patient should be taken into account when allocating resources. Meanwhile, Alabama’s state that “severe mental retardation” could be a cause for withholding care in times of shortage.
Coronavirus Threatens All, But Not Equally
None of this looks good for people living with rare diseases, chronic illnesses, or disabilities. Tragically, many of the people in these groups are at a higher risk of severe complications if they are infected with coronavirus. Jessica began discussing methods to downplay her disability if she ever needed to be hospitalized. How could she depict herself as being “useful” to broader society? And she would certainly need to exaggerate her ability to complete daily tasks.
Many are disappointed in the level of preparedness for Coronavirus. Responses have been sluggish, confused, and at times even massively counterproductive. As the death toll continues to climb, we can’t forget that the overwhelming majority of them could have been prevented.
This is a scary time for practically everyone, but people with disabilities or rare chronic diseases have more reason than ever to be concerned about their livelihoods. We have to remember that all lives are inherently valuable and that we cannot reduce one another to social usefulness or daily functionality measures.
Stay home and take care of one another as best as you can.