In the age of COVID-19, many of us are adjusting to the new realities of mask-wearing, social distancing, and remote interactions around work, school, and social gatherings. But for those who are especially vulnerable, these practices are not new.
Rebecca Mueller, a Ph.D. student in history and sociology of science, has been writing a history and ethnography of the cystic fibrosis (CF) community and says the pandemic has further marginalized those with the disease, but also has opened doors for greater connection.
“What’s interesting is that the CF community is already somewhat accustomed to operating at a social distance, and already has some of those skills and infrastructure in place,” says Mueller. “The pandemic has emphasized the ways that people with CF are different, in the sense that many are staying in quarantine longer and have different needs for social support, which the community was already well-equipped to address. And then, there's a way in which areas that had been off-limits for certain people with CF have opened up.”
For example, Mueller says the annual retreat of Cystic Fibrosis Research Incorporated, a nonprofit organization that funds CF research and offers advocacy and support programs, was held online this year. “As a result, more people could attend who could not in the past. People who were sicker and not able to travel could attend, and those with more resistant and contagious bacterial lung infections,” she says. “In addition, the Cystic Fibrosis Foundation’s annual scientific conference, which had allowed only a single person with CF to attend in recent years, has moved their conference online, effectively opening its doors to many more people with CF. So those are some ways in which I think COVID pushed the CF community to be more inclusive.”
Cystic fibrosis is a genetic, lifelong condition that primarily affects the pulmonary system with a persistent thick mucus that causes congestion and leaves people vulnerable to infection by opportunistic pathogens that are prevalent in the environment but do not affect healthy people. People with CF can suffer decline in lung function as well as gastrointestinal dysfunction.
“Because individuals with CF are susceptible to these microbes, they share similar vulnerabilities,” says Mueller. “And it became clear over time that they could infect one another, and that they should therefore be kept separated.”
My hope is that COVID-19 has a lasting impact on how we work and live by providing these more inclusive options over the long term.
Mueller became interested in studying the CF community while pursuing a master’s degree in genetic counseling. She assisted Professor Susan Lindee, Janice and Julian Bers Professor of the History and Sociology of Science, with a historical study of gene therapy for cystic fibrosis.
“In the course of that research, I stumbled upon these amazing testimonials about the value of the CF community,” she says. “This was an archived list-serve where people with the disease were explaining how much the community had meant to them and how sad they were that it was changing as a result of an infectious risk starting in the 1990s.”
The elevated risk had come from a microbe called Burkholderia cepacia, which was being developed for use in agriculture and industry. Scientists found that this pathogen, commonly found in soil, could serve as a natural biopesticide to protect food crops and could also be deployed to degrade industrial toxins.
“Medical microbiology was operating very much in a silo from agricultural microbiology and industrial microbiology,” Mueller says. “So at the same time that the CF scientists were greatly concerned about this pathogen, agricultural scientists were very excited.”
She says that, ultimately, the Cystic Fibrosis Foundation advocated to have the Environmental Protection Agency regulate the microbe more tightly in a way that reduced its use in agriculture. It now rarely causes infection in people with CF.
“To me, it was just this fascinating story of the genome and the biome,” she says. “It seemed like a great case study for thinking through the implications of genetic disease and microbiome research, which is a new area studying the many bugs and viruses that inhabit our bodies. That’s what led me to devote years to this question of the CF community and how it's been changed because of the risk of infection.”
Mueller earned a B.A. in American Studies at Barnard College, where she designed an interdisciplinary focus around medicine and health. She then worked at Penn as a research coordinator studying an experimental treatment for Type 1 diabetics, and went on to train and work as a genetic counselor so she could have a more direct role with patients. “It was in the course of my genetic counseling training that I found my interest in the history and sociology of science to be reignited,” she says.
Mueller thinks her research on the CF community offers several lessons for the COVID-19 pandemic.
“The first is that digital sociality, these online forms of community, the options to attend conferences or work virtually are actually more inclusive for a subset of people with disabilities,” she says. “My hope is that COVID-19 has a lasting impact on how we work and live by providing these more inclusive options over the long term.”
Her work also reveals that people with disabilities have relevant skill sets and competencies because of their unique circumstances. “People with disabilities, people with CF, are actually a resource whose niche cultures have value and unexpected relevance and are worth researching in in-depth ways,” she says.
Another lesson is one of advocacy. “My work, I think, raises questions about vulnerable bodies and who protects them,” says Mueller. “In the context of CF, people with the disease have a powerful resource in the Cystic Fibrosis Foundation, which had such an impact with the Burkholderia cepacia issue.”
She says the Foundation has been a strong advocate for the CF community during the pandemic as well. “It has worked at the individual, state, and federal levels to ensure that people with CF have access to things like telemedicine and ventilators, as well as the option to work from home long-term to stay safe.”
Mueller says those with many other diseases and disabilities do not have the benefit of an advocate like the Cystic Fibrosis Foundation. “I hope my work helps us ask about the experience of these other groups—Who is protecting them before, during, and after a pandemic?”