ICYMI: In Cancer Trials, a Lopsided Shot at Hope for Minorities – The New York Times

Another area where ensuring diversity is important:

Like a man on a flying trapeze, 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.

Mr. 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 and treatment.

“I’ve been over 12 months now with no treatment at all,” he said. “I walk half-marathons.”

Mr. Jones is one of many patients who have benefited from lifesaving 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 treatments in studies have been overwhelmingly white. Minority participation in most clinical trials is low, often out of proportion with the groups’ numbers in the general population and their cancer rates. Many researchers acknowledge 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 chemotherapy.

In the first study, of 582 patients with lung cancer, 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 black.

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 N.I.H. said.

But the N.I.H. 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, Bristol-Myers Squibb. 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 enroll them.

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. Brahmer, from the Johns Hopkins Kimmel Cancer Center.

 

Source: In Cancer Trials, a Lopsided Shot at Hope for Minorities

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About Andrew
Andrew blogs and tweets public policy issues, particularly the relationship between the political and bureaucratic levels, citizenship and multiculturalism. His latest book, Policy Arrogance or Innocent Bias, recounts his experience as a senior public servant in this area.

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