The American Association for Cancer Research announced today that ProPublica has won the June L. Biedler Prize for Cancer Journalism in the Online/Multimedia category. The annual prize honors outstanding journalistic coverage that enhances the public’s understanding of cancer, cancer research or cancer policy. ProPublica was recognized for a project by reporter Caroline Chen and former Google News Lab fellow Riley Wong that concerned a stark underrepresentation of African Americans in clinical trials for cancer drugs, even when the type of cancer disproportionately affects them.
Chen and Wong found that, in trials for 24 of the 31 cancer drugs approved since 2015, fewer than 5 percent of the patients were black, though African Americans make up 13.4 percent of the U.S. population. As a result, desperately ill black patients aren’t getting access to experimental drugs that could extend their life spans or improve their quality of life. One particularly striking example showed that even though black Americans are more than twice as likely as white Americans to be diagnosed with multiple myeloma, in four recent drug trials for that blood cancer, on average, only 5 percent of patients were black.
The team created its own data set for the story, manually entering FDA data on clinical trials used to approve drugs into a spreadsheet, and then matching it with incidence data from the National Cancer Institute. In order to understand the disparities they identified and the complex reasons for them, Chen and Wong spent months talking to various stakeholders: patients, physicians, drugmakers, researchers, patient advocacy groups, FDA officials and principal investigators overseeing clinical trials.
Finding individual patients whose stories could be told was particularly challenging. One reason for low African-American participation in clinical trials is that black patients often don’t belong to support groups or have doctors at academic hospitals. Instead, the reporters found them through cold calling, Facebook messaging and word of mouth. In the course of interviewing patients, they realized that many people don’t understand how trials work, prompting them to create and publish the Cancer Patient’s Guide to Clinical Trials. The guide has been shared through social media by the Leukemia and Lymphoma Society. The nonprofit BIO Ventures for Global Health also wrote an op-ed in response to the investigation, noting that “clinical trials are perpetuating existing health care disparities across the globe.”
Learn more about the June L. Biedler Prize for Cancer Journalism here.