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For this group of immuno-compromised patients, some good news amid coronavirus pandemic | Expert Opinion

When whispers of the COVID-19 crisis began to circulate in Philadelphia in late February and early March, widespread fear gripped the local cystic fibrosis (CF) community.

Anna Payne, 32, ran in 2018 for the position of auditor in Middletown Township, Bucks County. She now serves as executive assistant to the Bucks County Commissioners and a Middletown Township supervisor.
Anna Payne, 32, ran in 2018 for the position of auditor in Middletown Township, Bucks County. She now serves as executive assistant to the Bucks County Commissioners and a Middletown Township supervisor.Read moreWILL BUNCH

When whispers of the COVID-19 crisis began to circulate in Philadelphia in late February and early March, widespread fear gripped the local cystic fibrosis (CF) community. Born with a genetic defect that doesn’t allow appropriate regulation of salt and water, they are burdened with extra mucus, fibrosis and chronic bacteria in their lungs.

These patients are familiar with brutal lung infections and long hospitalizations. With underlying lung disease, coronavirus was thought to potentially be a death sentence for many of the 30,000 patients in the United States. Few believed the community would get through this unscathed.

Now, as we approach the peak in cases in many parts of the country, we have gotten a sense for the impact this virus has had, and to the amazement of many providers, the effect on this community has been minimal. Michael Boyle, head of the Cystic Fibrosis Foundation, noted on April 16 that there were only 14 known cases in CF patients in the country, few hospitalizations, and only one death. He also said that “two patients with very low lung function, less than 25%, survived their COVID-19 illness with a full recover.”

Locally, in Philadelphia, there has not been a single positive case in a patient with CF at the two centers, at Jefferson/St. Christopher’s and the University of Pennsylvania.

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Some may have had the infection and not been tested, yes, but these early statistics point to a vast success on behalf of this community. Most of the credit, likely, belongs to the patients. They did not have the attitude of “If I get corona, I get corona,” as one young defiant party-goer in Florida declared. These patients are used to very strict isolation measures, so many self-isolated early in the pandemic, way ahead of any official recommendations. They are also used to fastidious hand-washing, and wearing a mask is nothing new.

One of these CF patients is Anna Payne, executive assistant to the Bucks County Commissioners and a Middletown Township supervisor. She said, “I know people are struggling with social distancing, but hopefully they can look to the CF community for hope and inspiration. We know it’s not easy or comfortable, but if we can make it through we can save lives.”

The self-isolation certainly helped, but the vast success of this population in avoiding this lethal virus may not be just from distancing measures. Other things may have played a part, such as their generally younger age, their focus on hydration and appropriate sleep, or their extremely low rates of tobacco use. At the immune level, the chronic bacteria that live in their lungs may actually be protective, guarding its territory and not letting other pathogens in. Because they have been exposed to many bacteria and viruses throughout their lifetime, the antibodies and other white blood cells they built up in the blood over many years may be helpful in this case.

Now, having isolated themselves for several weeks longer than the general population, the question they are asking is when it will be safe for them to return to society, to work, to a normal life. Ron Rubenstein, professor of pediatrics and director of the CHOP/UPenn CF Center, said there are just too many unknowns now to give an accurate answer. “The infection rate of the general population is just not known; neither is the antibody status. A vaccine would be the best, but those have to be proven to be both effective and safe, which is going to take time.”

Until then, CF patients such as Anna Payne are making the best of it. Payne said, “Infection control will continue to be a part of my life long after this is over, but, hopefully, as a society that won’t have to be the case.”

Michael J. Stephen is an associate professor of medicine and director of the Adult Cystic Fibrosis Center at Jefferson Health.