Reply to: Another Vision From the Coronavirus Health Crisis in Spain: The Perspective From the Plena inclusión Developmental Disabilities Associative Movement

To the Editor:

I would like to thank Mr. Galván for his letter (1). He works for an outstanding organization that we have had the opportunity to collaborate with many times over the years, and even now during this pandemic. However, there are some points in his letter that need clarification in response to my correspondence in Biological Psychiatry (2). In response to Mr. Galván’s comment that the government has not allowed people with intellectual disabilities or autism to go out in the streets, I need only literally translate the government’s mandate: “The activity of using public roads authorized in order to assist and care for the elderly, minors, dependents, people with disabilities, and especially vulnerable people…allow people with disabilities who have behavioral disturbances, such as people diagnosed with autism spectrum and disruptive behavior disorders, exacerbated by the lockdown under the declaration of the state of emergency, and a companion to use public roads, as long as they comply with the measures necessary to avoid contagion” (3).

One problem that has been of great concern is the reading of the decree by some nongovernmental organizations and their constituents as a kind of “victory” or affirmative action, interpreting the government’s decision as a more general option to go out, without appropriate consideration of the risks encountered if people become infected. Balanced information helps citizens make decisions, and it should always include risks and benefits.

I strongly support the notion that altruism is better than obligation. This is also supported by a recent systematic review (4) and by results from countries that have adopted the altruistic approach, with better outcomes in terms of infections and deaths. Another important message from the above review is that there are fewer negative effects of lockdown when the population is given transparent information and real risk data. In Spain, the government’s messaging minimized the problem from the very beginning, and even in the midst of the pandemic, transparency has not been the norm (as a result, Spain is now the world’s first or second leading country in deaths per capita [https://www.worldometers.info/coronavirus/]). People with intellectual disabilities and autism were thus informed that with a clinical certificate they could go out in the streets. In my hospital alone, we received hundreds of requests from families for those clinical certificates in the first 2 weeks. Fortunately, the families were very receptive when clinical teams informed them about the increased risk. What they were not told was that a person with intellectual disabilities and autism was critically more vulnerable than someone who did not have these conditions. As the United Nations has recently reported, people with disabilities are at a disproportionately higher risk of becoming infected and, at the same time, at a greater risk of developing more severe health conditions and dying from COVID-19 (5).

Mr. Galván’s letter reflects the difference in perspectives of seeing the same reality from an office, rather than from personal experience on the front line. And this is worrisome, as many people are not really aware of and cannot even imagine the decisions that had to be made during the worst days of the pandemic. The government lied when it said that the intensive care units (ICUs) had not been overwhelmed, when they actually had been overwhelmed. For instance, in my hospital, there are 20 ICU beds, and we went up to 120—a 600% increase (some without ventilators)—so we were overwhelmed by a factor of 6. This was the case for many hospitals in cities such as Madrid and Barcelona. What that means is that, thereafter, decisions had to be made about who would have access to one of the ICU beds, leaving patients out based on the therapeutic ceiling. A layperson reading the paper by Emanuel et al. (6) would believe, as Mr. Galván does, that the only reason for prioritization is biological age, whereas someone who reads the medical literature would understand that it is not biological age, but rather life expectancy. What is the life expectancy of people with many rare disorders who also have intellectual disabilities and/or an autism spectrum disorder? Overall, life expectancy for people with an autism diagnosis and cognitive disability is reduced by more than 30 years, as compared with the general population (7). Mr. Galván should talk to any of the many family members of people with intellectual disabilities admitted to a hospital in Madrid during those days and ask them if their experience was the same as the person in the next bed without an intellectual disability or autism and what information they received about accessibility to ICU beds. I am sure that Mr. Galván must be aware of the document that the Spanish Society of Intensive and Critical Care Medicine and Coronary Units published to handle the COVID-19 crisis in Spain (8). At one point in this document, it is stated, “In elderly people, isolated survival should be subordinate to disability-free survival.” The same document mentions, as does the one by Emanuel et al. (6) cited in my correspondence, that the recommendation for prioritization is not based on the age of the patient, but rather on the number of years saved. And finally, it recommends prioritizing those people with better quality-adjusted life-years and taking into account the patient’s value to society. Unfortunately, as the United Nations has recently reported, assumptions about quality or value of life based on disability have been used in many countries to prioritize access to health care and life-saving procedures (ICU beds, ventilators) during the COVID-19 outbreak (5).

And this is how the difference between theory and practice can make “a categorically false statement” into the truth of what really happens behind the scenes. I believe that the lack of transparency in the messages conveyed to laypeople has created a parallel reality in Spain. On one hand, we have what we believe should happen in an ideal world—and in that I am with Mr. Galván—and on the other hand, we have what happens in real life under unprecedented extreme circumstances, and that is what I described in my correspondence.