You don’t have to be a psychologist to understand that there’s a good bit of emotional turmoil accompanying a decision by a cancer patient on whether to participate in the first in-human trial of an anti-cancer drug.
Even though their battles with cancer had left both Rosemary Rathbun and Lorrine Rodgers on death’s doorstep, they couldn’t help but fear that an untested drug would increase their pain or hasten their deaths. They understandably sought the advice of family on what to do.
As it turned out, and as I reported Jan. 11, the cancer that was on the verge of taking their lives disappeared after both women had treatments at Comprehensive Cancer Centers of Nevada with an antibody drug code-named MPDL3280A.
Although their very participation in the drug trial — Rathbun is white, Rodgers, black — is evidence race wasn’t a factor in who participated, the back story of how they came to participate may provide some insight as to why enrollment in clinical trials is disproportionately low among African-Americans, a situation that can be immediately harmful to blacks even as it dangerously compromises the accuracy of long-term generalizations made of trial results by researchers.
When I spoke with the 78-year-old Rathbun about how she came to participate, she said she thought long and hard about getting involved in something that might make her even worse off. When she nervously told members of her family about the opportunity, she said they wanted her to try anything to stay alive.
But when the 56-year-old Rodgers told loving relatives about the experimental drug, both she and her husband, Nelson, said many of them urged her not to be a guinea pig, just as they had urged her not to go along with some earlier breast cancer treatments. There was a lack of trust in doctors, they said, with concern about discrimination.
“I didn’t want to hear it any more,” Rodgers said. “I finally made decisions that were best for me.”
There’s no doubt many researchers recognize that a medical system that abused blacks in medical studies in the past has led to distrust among many African-Americans. How heavily that distrust weighs in blacks not accessing the medical system is unclear. Many experts stress the lack of insurance has carried far more weight.
But when the Food and Drug Administration reported in 2013 that blacks represent 12 percent of the population but only 5 percent of clinical trial participants, the agency pointed to a lack of trust as a reason. After researchers at the Sinai Institute in Chicago found black women are 40 percent likelier to die from breast cancer than white women, experts concluded that the lack of access to treatment was the cause, with black women far more likely to be suspicious of a historically discriminatory medical profession as well as uninsured.
Given what a new treatment did for her, Rodgers said she’s now suggesting to friends that they do their homework on what medicine is accomplishing today rather than basing health care decisions on distrust produced by an ugly past.
“We need to be thinking about our health tomorrow,” she said.
If Harriet Washington, a former ethics fellow at Harvard Medical School, is right, the reasons for the distrust by blacks toward medicine today can be found in her book, “Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present,” which won the 2007 National Book Critics Circle Award for Nonfiction. Although she acknowledges horrific medical experimentation has long involved the vulnerable, including the poor and institutionalized, she argues persuasively blacks have suffered most.
The book goes well beyond the history of the well-known “Tuskegee experiment,” where government researchers allowed 400 black men to go untreated for syphillis for 40 years during the 20th century so doctors could study the disease.
Washington relates: Procedures on slaves without anesthesia to develop gynecological surgery; doctors throwing scalding hot water on men suffering from malaria to see if it would end chills and fatigue; a trucker placed without his consent into a 1945 radiation experiment in Tennessee; black boys used in the ’60s and ’70s in Mississippi to test neurosurgery techniques; black youths injected in the 1990s with a drug in New York to test a hypothesis about the genetic origins of violence and an extensive list of other misdeeds far too long to share here.
Rodgers doubts her relatives or many blacks are aware of such specifics but says, “They’ve probably heard things” that have made them distrustful of the medical establishment and “set in their ways.”
But to be set in your ways today, she said, makes no sense when new medical breakthroughs seem to be made virtually every month.
Although blacks should not forget the abuses of the past and do everything possible to ensure they are not repeated, Washington says that not accessing the medical system today is a mistake.
In an interview with the History News Network in which she said researchers now turn to the Third World as “their personal laboratory,” Washington said steps have been taken so the “rampant abuse of yesterday” does not exist anymore in the U.S. “That’s very positive and I’m happy to acknowledge that.”
“Avoiding medical care and research is not something we can afford,” she said. “It’s very dangerous for us and already harming us.”
Rodgers puts it this way:
“I’m interested in living in the future. I can’t do that if I’m living in the past.”
Contact reporter Paul Harasim at firstname.lastname@example.org or 702-387-2908.