Advancements in Including Minorities in Cancer Clinical Trials Have ‘Leveled Off’ Over Past 2 Decades, Says Expert

Twenty years ago, the government signed into law an act from the National Institutes of Health (NIH) to improve minority representation in cancer clinical trials.

Although some advances have occurred in the decades since, the benefits of that law have fallen off, according to an expert.

“Even though there was — in the first decade post-(NIH Revitalization Act) passing, there was a bit of improvement (of clinical trial enrollment) for White women, that sort of leveled off,” Faith Mutale, an oncology nurse practitioner at the University of Pennsylvania Abramson Cancer Center in Philadelphia, said in an interview with CURE®’s sister publication, Oncology Nursing News®. “And then there was a bit of improvement in African Americans enrolling on to clinical trials, but that leveled off too.”

The initiative, which was signed into law in 1993, established guidelines for the inclusion of women and minorities in clinical trial research.

However, as Mutale said, more work is needed to mitigate the remaining disparities.

“Not just from a policy level, but also oncology providers need to be more inclusive … also in terms of having that sense of intentionality to actually recruit minority patients into trial,” she said.

READ MORE: Despite ‘Incredible Advancements’ in Cancer Care, Experts Say Systems Are Still Not Inclusive for All

When talking with patients with cancer, clinicians are advised to educate patients about clinical trials and discuss patient eligibility.

However, Mutale said that this is not always the case.

Instead, Mutale explained, that some clinicians conclude that a patient may not be interested in or eligible for a trial, and therefore not even bring it up.

“But the provider is making that decision based on whatever they are looking at,” she said. “So that needs to change.”

Trust is an important component to educating patients with cancer about clinical trials, according to Mutale. A study she and her colleagues led surveyed patients from diverse backgrounds from two cancer centers.

“In our project, a lot of our participants talked about the Tuskegee (experiments),” Mutale noted. “And those are front and center issues in these populations that cannot be overlooked.”

The Tuskegee experiment was a study by the United States Public Health Service (PHS) and the Centers for Disease Control and Prevention (CDC) that spanned four decades (1932 to 1972) that tracked the progression — and ultimate death — of hundreds of Black men who were not treated for syphilis, despite penicillin becoming the recommended and effective treatment for the venereal disease in 1947.

Fifty years ago, in July 1972, a national news story detailed the trials, and facing public outrage for the unethical treatment of the men on the study, the PHS and CDC shut the trials down.

To rebuild trust in the medical system for Black and other minority communities, Mutale said, “the impetus is on us (health care providers).”

However, she also mentioned that patients can learn about clinical trials and bring up the topic, even if their providers are not the ones initiating the conversation.

“A lot of education must take place,” she said. “You cannot advocate for something that you don’t know about.”

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