In Cancer Trials, a Lopsided Shot at Hope for Minorities

“It’s something you don’t want to hear,” said the patient, a slight, sad-faced man of 61 with a soft voice and a strong Jamaican accent. He asked to be identified only as Mr. M., to protect his privacy.

“We all have to go,” he said.

Linda Bulone, a research nurse manager, was hoping to buy him some time with a study that would test for mutations that might make his cancer vulnerable to certain new drugs, which he could then receive.

Her effort was part of an unusual collaboration between the Queens center, where 92 percent of patients are from minority groups, and Memorial Sloan Kettering Cancer Center, one of the nation’s most renowned cancer hospitals.

Opened in 2002 by Dr. M. Margaret Kemeny, a surgical oncologist and professor of surgery at Mount Sinai School of Medicine, the Queens center is part of NYC Health & Hospitals/Queens, a public hospital that turns no one away. Many patients there are uninsured; 85 percent of those with cancer qualify for emergency Medicaid, Dr. Kemeny said. The cancer center operates a food pantry, and many patients need it.

Dr. Kemeny wanted cancer patients to have access to studies, and lured Ms. Bulone away from a tony suburban hospital to start a research center in 2004.

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Julia Robles, who has stomach cancer, gets information on nausea through a telephone translation service used by the Queens Hospital Cancer Center. At right, Linda Bulone, a research nurse manager, comforts Ms. Robles. Credit Joshua Bright for The New York Times

“You can’t do good medicine for cancer without a research program,” Dr. Kemeny said. Most of her patients in Queens have never heard of clinical trials.

Mr. M., for instance, knew nothing about genetics, mutations or Memorial Sloan Kettering. Sensing that he, like many of her patients, had trouble reading, Ms. Bulone took most of an hour to read the consent form for the study aloud and explain it. He signed.

“Once you’re in the study, you’re a patient of mine forever,” Ms. Bulone told him. As she does with every study patient, she gave him her cellphone number and said he could call her any time night or day. He hugged her on the way out.

“I don’t convince them of anything,” she said. “I educate them. We have to protect them, inform them, make sure they’re getting a true impression of the study. Not every clinical trial is for every person.”

The center has patients in about 35 trials, she said, adding that drug companies looking to enroll minorities sometimes seek out the Queens center because it’s such a melting pot. Though she is white, she has had no trouble signing up patients from other races, she said.

“You have to really care,” she said. “You have to put yourself into it.”

She said it was important to work with patients who are illiterate or have little education, factors that some may think would impede their ability to follow directions, and make them poor candidates for clinical trials. She considers that discriminatory.

“We want to give them the best treatment we can,” she said. “But there’s also the emotional part. That’s all you have left when the medicine runs out.”

Ms. Bulone uses a telephone translating service to explain studies to patients who do not speak English, and the hospital or drug companies pay $2,000 to $6,000 to have consent forms translated.

To find patients who might be helped but know nothing of trials, she recently began asking another city hospital for its list of patients to be discussed at its “tumor board” meetings, where doctors evaluate difficult cases.

If any patients meet the criteria for a study, she contacts them. Recently, she found Sung Yoo, a Korean man with gastric cancer who qualified for a promising study of a checkpoint inhibitor. It took 16 days to get the consent form translated, but he waited and eagerly signed up.

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Sung Yoo, who has gastric cancer, is examined by Dr. Vivian Ripin at the Queens center. Credit Joshua Bright for The New York Times

“People want to live,” Ms. Bulone said. “They just do.”

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 Kettering.

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.

“I sometimes cynically say, ‘The drug certainly does not work in blacks when blacks don’t get prescribed the drug,’” Dr. Brawley said.

He added: “When there’s a rumor that a new drug is hot, if it is being offered, upper-class Americans with good insurance will fly to the medical center, stay in a hotel, get on the trial.”

The notorious Tuskeegee study, in which black men with syphilis were deliberately left untreated during the mid-20th century, is frequently cited as a reason that blacks avoid studies. But once the safeguards to prevent abuse are explained, researchers said, minorities are just as willing as whites to participate. Most people are wary of studies with control groups given placebos, but cancer studies do not use placebos: The control group generally gets the best available standard care.

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