INDIA ABROAD JANUARY 13, 2017 30 HEALTH
By Denise Grady
ike a man on a flying tra-
peze, K. T. Jones has
leapt from one medical
study to another during
his 15-year struggle with
cancer, and he has no doubt that
the experimental treatments he
has received have saved his life.
Jones, 45, has an aggressive
type of Hodgkin’s lymphoma
that resists the usual therapies.
At the start of his most recent
clinical trial, his life expectancy
was measured in months. That
was more than three years ago.
He received a drug that helped
his immune system fight cancer
— a type of immunotherapy, the
hottest area in cancer research
“I’ve been over 12 months
now with no treatment at all,” he
said. “I walk half-marathons.”
Jones is one of many patients
who have benefited from lifesav-
ing advances in immunotherapy.
But he’s an outlier: He is African-
American. As money pours into
immunotherapy research and
promising results multiply,
patients getting the new treat-
ments in studies have been over-
whelmingly white. Minority par-
ticipation in most clinical trials is
low, often out of proportion with
the groups’ numbers in the gen-
eral population and their cancer
rates. Many researchers acknowl-
edge the imbalance, and say they
are trying to correct it.
Two major studies of
immunotherapy last year starkly
illustrate the problem. The drug
being tested was nivolumab, a
type of checkpoint inhibitor, one
of the most promising drug classes for cancer. In both studies,
patients taking it lived significantly longer than those given
In the first study, of 582
patients with lung cancer, about
92 percent were white. Three
percent were black, 3 percent
were Asian and 3 percent were
listed as “other.” In the second
study, of 821 people with kidney
cancer, 88 percent were white, 9
percent Asian and just 1 percent
According to 2015 census figures, whites make up 77 percent
of the United States population,
blacks 13. 3 percent and Asians 5. 6
percent. A 1993 law requires that
all medical research conducted or
paid for by the National
Institutes of Health include
enough minorities and women to
determine whether they respond
to treatment differently than
other groups. Minority enrollment in its studies was about 28
percent in clinical research and
40 percent in Phase III clinical
trials in 2015, the NIH said.
But the NIH paid for only
about 6 percent of all clinical trials in the United States in 2014,
and those it does not support do
not have to adhere to its rules.
The lung and kidney studies of
nivolumab, for instance, were
paid for by the drug’s maker,
Researchers say such studies,
geared toward getting a drug
approved for new uses, are often
done quickly, and minority
patients may be left out because
it can take longer to find and
One obstacle, researchers say,
is that people in minority groups
tend to have lower incomes and
less education, and therefore less
awareness of medical studies and
how to find them. Many live in
areas that do not have easy
access to a major cancer center.
Moreover, minority patients with
cancer are more likely to have
other, poorly controlled chronic
diseases like diabetes that may
make them ineligible for studies,
according to Dr. Julie R.
Hopkins Kimmel Cancer Center.
Even if they do qualify and
want to enroll, financial hurdles
can be daunting. Studies may
involve frequent trips to the hospital, requiring time off work and
expenses for travel, parking and
child care. Some doctors simply
assume that lower-income,
minority patients could not manage it.
“One of the biggest barriers is
doctors not asking patients to
join clinical trials because they
assume they would not be trial
candidates,” said Dr. Elise D.
Cook, from the MD Anderson
Cancer Center in Houston. But
many, she said, “would partici-
Trials can offer huge advan-
tages, like new treatments that
may otherwise be unavailable.
Expensive drugs and tests are
usually free. The overall care is
often better than routine treat-
ment, because patients see doc-
tors and nurses more frequently
and have more tests. Though
success is not guaranteed, a clini-
cal trial can be a lifeline.
“Clinical trials are the most
advanced treatment, the most
cutting-edge therapies we have,”
said Dina G. Lansey, the assistant
director for diversity and inclusion in clinical research at the
Johns Hopkins Kimmel Cancer
Center. “They should be avail-
Trying for a Varied Mix
Clinical trials can reveal things
useful to a whole ethnic or racial
group. For instance, a drug for
kidney cancer, sunitinib, has
proved more likely to cause skin
problems in Asians than in
whites. But how blacks compare
is not known, because not
enough have been included in
studies, said Dr. Robert J.
Motzer, an oncologist at Sloan
But Dr. Otis W. Brawley, chief
medical officer of the American
Cancer Society, said, “When we
look at race, it matters sociopolitically far more than biologically.”
He said lower enrollment of
minorities in clinical trials was
part of a larger problem of
unequal care that contributes to
higher death rates from treatable
cancers in some groups.
One way to increase minority
enrollment that some researchers
favor is conducting studies that
focus on specific racial or ethnic
groups. Few such studies are
done, but Brawley warned that
requiring certain enrollment lev-
els for minorities could backfire,
tempting researchers to pressure
patients to sign up.
Another solution, some suggest, would be for medical journals to refuse to publish studies
unless they include appropriate
numbers of women and minorities.
‘I’m Going to Find
There were 23 people in the
small study that probably saved
Jones’ life. He was one of two
blacks — a higher proportion than
in most larger studies.
Jones said that he was
unaware of any racial divide in
research, and that his stubborn
personality and determination to
live drove him to find studies,
entirely on his own.
“I made a commitment to a
lifetime with my wife,” he said.
“A lifetime wasn’t going to be a
year or two.”
He scoured Clinical Trials.gov,
which lists available studies for
many diseases. A drug name he
saw there led him to an online
video describing a study at MD
Anderson Cancer Center for
patients like him. Jones lives in
Delaware and thought MD stood
for Maryland, a short drive away.
He was stunned to find out the
hospital was in Houston. He and
his wife had to stop paying their
mortgage to afford plane tickets.
Eventually, they lost their house.
But the treatment worked — for a
When he relapsed again, he
could not afford to keep traveling
to MD Anderson. His doctor there
helped him transfer his care to
Sloan Kettering in New York.
Again, experimental treatments helped, but temporarily.
Then he hit the jackpot. In 2013,
he entered a trial of the checkpoint inhibitor nivolumab. He
was treated for two years. The
study became a landmark, with
an 87 percent response rate
among patients like Jones, who
had burned through every other
option. “This was just hitting it
out of the park,” said Dr.
Alexander M. Lesokhin, his
oncologist at Sloan Kettering.
Jones was treated for two
years. His tumors shrank, and he
has been off treatment for a year.
Doctors are not sure whether the
cancer is gone or being kept at
bay by his immune system. But
he is feeling well and has
embarked on a new career that
he loves, photographing jazz
musicians. As for his illness, he
said: “I didn’t have a specific person to guide me. Everything fell
into place for me because I
pushed for it. I’m telling everyone else: ‘Don’t give up. You
have to self-advocate.'"
− The New York Times
Above, Dr. Vivian Ripin examines the
stomach of Sung Yoo, who has gastric
cancer, at the Queens Cancer Center
in New York, Dec. 14. Left, Julia Robles,
who has stomach cancer, gets
information on nausea through a
telephone translation service with
Linda Bulone, a research nurse
manager, at the Queens Cancer
Center in New York, Dec. 9.
As immunotherapy research takes off, the patients getting the treatment have been
overwhelmingly white. Researchers know this and say they are trying to correct it
Joshua Bright/The New York Times