Carolina Alumni Review - January/February 2011

ity of patients, clinical trials showed, the drug successfully slowed the disease’s progression, and that has been their only hope.

Pulmonary fibrosis is not like the more familiar cystic fibrosis.

“Everyone assumes that,” Donohue said.
“In fact, if you’ll Google pulmonary fibrosis,
you’ll get hundreds of hits for cystic fibrosis.
But they are diametrically opposed.” Cystic
fibrosis is a disease of the bronchial tubes,
and it is a young person’s disease. “Unfortu-
nately, they have similar names.”
The confusion with cystic fibrosis, a dis-
ease that afflicts only one quarter as many
people, demonstrates the extent to which
pulmonary fibrosis is unknown. Asked how
much public awareness there is of pul-
monary fibrosis, Donohue said, “Absolutely
none.”
Noble at Duke attributes the lack of
progress on discovering viable treatments
for the disease partially to its relative
obscurity. The disease is complex and poses
a major challenge for science, he said, but
because few people are aware of it, pul-
monary fibrosis has not gotten the kind of
research effort it needs.

The disease proves an old adage: “What
you don’t know can kill you.”
And kill it does. There are fewer than
200,000 diagnosed patients in the U.S. at
any time, few enough for doctors to use
the term “orphan disease” to describe it.
But 40,000 people die from it every year,
according to the coalition. To put that in
context, consider that breast cancer claims
the same number of American lives each
year, but afflicts many, many more patients,
Barnes said.

Lung transplants are available but usually only for patients 65 or younger. And even when a patient has a lung transplant, the average survival period is only four to eight years, Noble said. In these cases, pulmonary fibrosis doesn’t work itself into the new, healthy lung. Instead, problems associated with lung transplants, such as organ rejection and scarring that affects small airways, kill the patient.

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Ultimately, a cure

Wilmington patient Tommy Spivey couldn’t be treated with pirfenidone at home, so he went to Japan, where the drug was available. Now back, he said that the drug had stopped the disease’s progression in his lungs. “It didn’t cure me … but it’s

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