Bacteria changed care for cystic fibrosis patients

In the cystic fibrosis community, Burkholderia cepacia is notorious because it triggered a dramatic change in the care of patients.

It was first isolated as a bacteria in nature in 1949 from rot on an onion and then found on other fruits and vegetables as well. It is typically not harmful to healthy people, but it struck those with cystic fibrosis in the early 1980s and spread quickly, with some hospitals having cepacia infection rates among patients of more than 20 percent.

John LiPuma, a University of Michigan researcher who is considered the leading authority on the bacteria, said despite an apparent connection to interpersonal contact, the federal Centers for Disease Control and Prevention “was saying for a long time that [cepacia] was not spread person to person.”

But Dr. LiPuma’s research — involving a new genotyping method that allowed comparison of specific samples of the bacteria — quickly proved that it was.

His 1990 paper on how the infection was spreading from patient to patient quickly resulted in new infection controls among cystic fibrosis patients with one main rule: Cystic fibrosis patients could not come in contact with one another.

Although about half of cystic fibrosis patients now live into adulthood, back then, less than 20 percent of them did.

To bolster the spirits of its mostly young, frequently hospitalized patients, hospitals used to regularly throw pizza parties and other social events for cystic fibrosis patients, and national organizations sponsored camps for the patients to attend together. All of that ended in the early 1990s after Dr. LiPuma’s discovery.

“That was my doing,” Dr. LiPuma said. “It was the reason I was vilified in the cystic fibrosis community for a while.”

“It was a very hard pill to swallow to say we can’t support these camps and activities.”

But as quickly as the cepacia infection rates had risen among patients, new cases declined once patients were prevented from contacting each other. Today the infection rate is less than 3 percent among the country’s 30,000 cystic fibrosis patients.

“It has really been an impressive change,” Dr. LiPuma said.