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start the trial, he signed the papers. “We just took a
leap of faith,” says Cherry. Simpson ended up taking
Avastin and Torisel through the IMPACT2 trial
for five months. He suffered side effects, including
painful anal fissures, and his cancer progressed. In
March 2016, the couple left Houston, where Simpson
was being treated, and headed home.
Back in Alabama, Simpson and his wife searched
for local clinical trials. They found one for the
immunotherapy drug Opdivo (nivolumab),
which at the time was approved only for treating melanoma and lung cancer. But the trial was
in Birmingham, Alabama, 250 miles from Mobile,
and the couple worried about the distance and
expense. So Simpson’s local oncologist decided
to prescribe Opdivo off-label. Medicare denied
Simpson’s claim for coverage, but he got financial
assistance through the drug’s maker, Bristol-Myers
Squibb. Simpson started the drug in July 2016, and
after it was approved for head and neck cancer in
November 2016, Medicare did cover it.
Simpson is so far doing well on Opdivo. The
couple has gone on three cruises, taking some of
their six grandchildren with them each time. They
are also taking the opportunity to make thoughtful
end-of-life plans for both of them. “We’re living life
and enjoying it and at the same time we’re getting
our affairs in order,” Cherry says.
KATE YANDELL is the associate editor of Cancer Today.
“The drugs are
not standard of care
and insurance is
to pay for them.”