TERESA BARNES ’96: A DISTANT CURE
PHOTOS COURTESY OF TERESA BARNES
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
given me hope.’
He’s also started
the process of
trying to secure a
lung transplant.
given me hope.” He’s also started the
process of trying to secure a lung transplant.
On May 4, the FDA’s Pulmonary-Allergy
Drugs Advisory Committee refused to
approve the drug, the only treatment available. The agency’s advisory panel of doctors
had voted 9-3 to approve the drug, a move
that had given hope to patients and families,
but the recommendation did not convince
the FDA, which instead found that pirfenidone had fallen short of demonstrating
resoundingly positive results in clinical trials.
That decision infuriated Lisa Richard-
son Waller. “These people [patients] have
nothing, no sense of hope. Pirfenidone
gave them hope. … I can’t believe the
FDA didn’t see it that way.”
In her presentation to the FDA, Waller,
owner of an advertising agency in Atlanta
and a mother of two, had used pictures of
her family members, those who had died
and those of the next generation. She said
she not only fears for her own life but also
those of her children.
Spivey was so angry he considered painting an anti-FDA message on the side of his
company’s trucks. Instead, after Teresa Barnes
had a chat with him, he adorned the trucks
with the message, “Stop Pulmonary Fibrosis.” Today, they’re traveling coast to coast.
Is there reason for hope? Long term,
maybe, but not soon. At a May meeting of
the American Thoracic Society, the world’s
largest organization of pulmonologists,
papers regarding two new potential treat-
ments did raise hopes. But both research
projects are in their early stages.
Tommy Spivey was
so angry about the
FDA’s decision he
considered painting
an anti-FDA message on the side of
his company’s
trucks. Teresa
Barnes talked him
into a more positive
approach — he
adorned the trucks
with the message,
“Stop Pulmonary
Fibrosis.”
