Comments on Health Beliefs, Risk, Mitigation, and Sociological Research Methods, a Disabled Perspective
The CDC HICPAC Committee Tried to Reduce Infection Prevention and Control Measures in Healthcare Under the Radar. My Response:
The Centers for Disease Control and Prevention’s (CDC) Healthcare Infection Control Practices Advisory Committee (HICPAC) recently proposed updates to the guidance on standard precautions in healthcare. The drafted guidance, if implemented, would serve to seriously weaken existing protections against contracting infectious diseases in healthcare settings. Furthermore, the CDC continues to ignore the importance of precautions for the prevention of infectious aerosols, which are vital for protection against viruses like Tuberculosis, Measles, and SARS-CoV-2 (COVID-19). The CDC has taken steps to conceal their efforts to reduce the safety of healthcare settings. I join other scientific experts, as well as experiential experts in the disabled community, in demanding transparency from the CDC and urging the CDC’s HICPAC members to reconsider their drafted guidance and update it to reflect the science on prevention of aerosolized transmission of disease.
Hi, my name is Heather Sue Rosen. I am speaking as a Medical Sociologist and Postdoctoral Researcher at the New England Complex Systems Institute, the child of two Air Force Veterans, resident of the State of Georgia, a member of the World Health Network, and a disabled person with an autoimmune disease and over 15 years of experience with medical gaslighting related to complex chronic illness. Some of these chronic illnesses put me at higher risk of complications from COVID-19, like juvenile idiopathic arthritis, asthma, Ehlers Danlos Syndrome (EDS) Type 3, and mast cell activation disorder (MCAS). Others, like Postural orthostatic tachycardia syndrome (POTS), can arise after COVID-19 infection—many long COVID patients have POTS. We are already ill equipped to manage the onslaught of newly disabled patients with these illnesses which were, as recently as 2019, considered “rare,” with some going as far as to question whether they were “real”. Even now with a growing population of people who are aware of POTS, long COVID patients complain of long wait times for appointments only to arrive and be referred to a psychiatrist. Allowing COVID-19 to spread unchecked in healthcare facilities exacerbates these difficulties for people with complex chronic illnesses seeking healthcare, as more people will become ill with long COVID, a risk that increases with each subsequent reinfection. Healthcare workers are at inherently higher risk for reinfection with inadequate PPE, and many have left the workforce. Many people with long COVID have also dropped out of the workforce, including healthcare workers, but also across industries. Without protection against COVID-19 infection in healthcare, we are creating a situation that contributes to ongoing worker shortages both in and outside of healthcare while increasing the population of patients needing, not just care, specialized care. There are two main reasons it is not sufficient to limit respirator usage to certain areas of the hospital/clinic or certain contexts of interactions. The first, and most important reason, is that SARS-CoV-2 is spread via infectious aerosols, which can linger in the air long after an infected person has left the space. Furthermore, surgical and procedural masks are insufficient protection against infectious aerosols. N95 or better respirator masks must be required in healthcare, and NOT limited to patient treatment areas. Patients must wait in the waiting room amongst other patients, some of whom may be infectious. They must also enter exam rooms shortly after other patients have left the space; COVID-19 may still be lingering in the exam room under these circumstances. Lastly, some types of healthcare are performed in communal spaces. For example, physical therapist’s offices are often set up with several exam tables and various exercise equipment in one large open space. In my own visits to physical therapy since the lifting of mask mandates in healthcare, I have experienced hostility from clinic staff for wearing a mask and pushback from providers when I request they mask. I have had to file ADA accommodations to ensure my safety at routine healthcare appointments. This leads me to reason number 2 that a universal mandate for N95 or better respirators in healthcare settings is the only truly safe policy for protecting patients from COVID-19, which is not only still present, but is currently surging in the United States. While fighting for safe and appropriate healthcare is not new to me, it definitely does not make me smile to see so many others now forced to do the same. As a sociologist, I have researched how something called “cultural health capital” directly affects the level and speed of care for chronically ill patients. Cultural health capital comes from experience and proximity to healthcare, the idea being that the more experience and proximity you have, the better you will be able to advocate in a way that the physician accepts and therefore the better and speedier your care will be. Patients with illnesses like POTS are often given some deviant label, for example, when they are referred to psychiatry instead of being taken seriously, or when they are dismissed by all but the most specialized physicians, or when they have to advocate for their rights under the ADA to have their providers protect them from COVID-19. The deviant label tanks cultural health capital. By failing to mandate N95 or better respirators in healthcare, we force patients to advocate for themselves in situations where they do not have the cultural health capital required to achieve the necessary outcome via advocating for themselves. I have a PhD, I am white, I am thin, and I have moved in elite circles to know how to carry myself as such—I have a lot of privilege for a patient with complex chronic illness, and yet, I am often not taken seriously until my spouse, a white man, gets involved. It is naive to assume all patients considered “high risk” for severe acute phase covid-19 will be able to successfully advocate for themselves so that their providers wear appropriate PPE during the exam, and that patients who achieve ADA accommodations are often still faced with a provider in a surgical or procedure mask instead of an N95 or better respirator is in opposition to aerosol science. As an expert who has frequently been ignored by expert medical providers when it comes to my own safety in healthcare, and given this happened long before COVID-19, I urge HICPAC to acknowledge the need for experts in other sciences, particularly aerosol science and social science, must be consulted regarding the draft guidelines for standard precautions. Healthcare is a human right, and health care providers took an oath to protect patients. I urge you to protect us. Thank you.