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Black, Minority Lives Need to Matter in Medicine, Too
R. J. Crayton   Apr 8, 2015   Ethical Technology  

Recently, I tuned in to watch a 60 Minutes television story on a experimental cancer treatment being tested that was being hailed as near miraculous. As I saw the face of one white patient after another white patient who was cured by injecting the polio virus into a brain tumor, I started to wonder: where are all the black people? Or Hispanics or Asians? It brought to mind the popular campaign and twitter hashtag, Black Lives Matter

.

While that slogan was initially used in protest of police brutality, its sentiment, unfortunately, echoes across many segments of society. As I finished watching the story, I wondered too myself, “Do black lives matter in medicine?”

The 60 Minutes cancer story highlighted the patients who did well with the procedure, including a man who was more than 70. While some patients involved in the Duke University study died as researchers tried varying doses of polio, those who got the sweetspot dose did remarkably well. They did so well, in fact, that one of the researchers told 60 Minutes, “This, to me, is the most promising therapy I’ve seen in my career, period.” As I watched the sea of white patients, it seemed there had to be at least one or two African American, Hispanic or Asian patients who deserved a shot at this seemingly miraculous treatment.

Since I knew nothing about the study’s design or patient evaluation parameters, I realized it would be baseless speculation to think that somehow minorities were purposely excluded. However, I did find it odd that not a single minority was featured. I decided to look at some data to decide if I was reading too much into this. The first thing I looked at: How likely is it to find racial inequity in medicine? Unfortunately, the answer there is very likely. Studies indicate minority patients, particularly black patients, face discrimination in treatment that leads to adverse affects on their health.

A 1999 study published in the New England Journal of Medicine (NEJM) found that doctors failed to recommend the better, more comprehensive diagnostics for black patients as they did for white men. In that study, black females got shafted the most, with docs being extremely unlikely to prescribe the best procedure for coronary artery disease. NEJM researchers wrote, “Bias may represent overt prejudice on the part of physicians or, more likely, could be the result of subconscious perceptions rather than deliberate actions or thoughts.”

Johns Hopkins University noted in 2011 that studies “have shown that roughly 70 percent of the general population, as well as doctors specifically, have an implicit preference for white people.” In its study, Hopkins found that medical schools may be reinforcing preferential treatment for white patients. “(I)t may be that training and experience are unwittingly reinforcing negative stereotypes pushing us to unconsciously treat some patients differently,” said Dr. Adil Haider, who led the Hopkins study. “If this is the case, it makes a good argument for interventions to ensure that doctors are aware of how even subtle biases may affect their decision-making and their assessments of patients.”

Most recently, a study released in 2014 indicated that whites experience something called implicit bias, where they unintentionally are biased against nonwhites. While the person does not intend to discriminate, they naturally offer favorable treatment to whites.

Could that have gone on here? Well, you’d have to look at the study participants to know. The 60 Minutes report wasn’t the totality of the study. Maybe the bias was on the end of the reporter, who preferred to showcase white patients. Actually, let’s cut him some slack. Having been a reporter, I know you can only talk to people willing to talk to you. So, perhaps nonwhite subjects weren’t interested in being interviewed by our erstwhile reporter. But again, that’s conjecture.

What if, I wondered, there were no minority patients featured because the study had few minority patients actually participating in it. What if the disease simply was less likely to affect minorities. Diseases tend not to discriminate based on race; disease only cares about genetics. However, certain ethnic groups, based on genetics, are more likely to get certain diseases. It would be rather unfair for someone to get upset that there were too few white people in a sickle cell disease study. Worldwide, the disease affects people who have traditionally lived in malaria-prone regions. The sickle cell trait (one sickle cell gene, but not the disease) allows its bearer to fight off malaria. Two genes produces the disease. In America, sickle cell disease is more prevalent among African American patients because many are descended from African countries prone to malaria. White settlers tended to be from Northern European countries where malaria wasn't a factor. So, is the disease discussed in the study, the glioblastoma brain tumor, simply not much of a factor for African Americans or other minorities?

According to a 2012 report from the Central Brain Tumor Registry of the United States, “Glioblastomas are over two times higher among whites as compared to blacks (Table 14).” Upon visiting Table 14, it shows the incidence for whites of 3.45 per 100,000, compared to 1.64 per 100,000 for blacks. This indicates it’s more prevalent in whites, but still exists in the black community, so any study trying to have a patient makeup similar to the makeup of those impacted by the disease would include more whites than blacks. But would it really include none?

Enough conjecture on my part. I wanted to find out what was really going on. So, as a former reporter who was privileged enough to work in a newsroom with massively talented people like Karen Dillon at one point, I decided to try to find some answers the old fashioned way: talk to the people at Duke.

Before I tell you what they said (seriously, this is not bait and switch; just bear with me a tad longer), let me throw out one more statistic for you. According to a 2014 University of California-Davis study, nonwhites make up fewer than five percent of all patients in clinical trials. Black, Hispanic and Asian people who are sick and who could get better from new treatments proposed in trials are not getting that same shot at getting better as white people are because they’re just not being included in the trial. They’re simply dying.

“What is needed is deliberate effort. Minorities are not hard to reach. They are hardly reached,” Moon Chen, the associate director for cancer control at UC Davis, said when the study was released. “Whatever happens in the laboratory or in the clinic needs to be applied to solving real-world problems, and those relate to the disproportionate effects of cancer and other diseases on racial and ethnic minorities.”

Now, let me tell you what the folks at Duke said? First and foremost, they told me that the study wasn’t complete and they weren’t releasing their data to me or anyone else. (I know, hard to believe I’m not so special that they wouldn’t make an exception). Fair enough. Dr. Darell Bigner, director of the Preston Robert Tisch Brain Tumor Center at Duke, told me that “all of our trials, not only in brain tumors, but all types of cancers, are open to minorities.” While I suspect it would violate federal research standards — and I am certain it would be unethical — for a program not to be “open to” minorities, it’s nice of him to state that for the record. He contends the group is happy with African American participation in the study because, “African American patients have a very significantly lower incidence than other populations.”

Bigner noted that his staff “performs outreach to enroll minorities, and we contact our referring physicians letting them know that we are eager to enroll minorities and women in all of our trials.”

Despite this, Bigner admitted that they’ve failed to adequately represent at least one groups of minorities. “Hispanic populations (we believe) are under-represented in our catchment area for the age groups, which are older aged patients, that have the highest incidence of brain tumors.”

I really do appreciate Dr. Bigner responding with such candidness. I think that’s important in situations like this, because without data from researchers during the trials, we don’t know until the end what they’re up to.

When people’s lives hang in the balance, and traditional treatments equal a sure, painful death, I don’t think race should be a factor in determining whether patients are informed of or get recommended for clinical trials. Some of this may represent implicit bias as discussed above. However, many research facilities, like Duke, offer minority outreach. In truth, there is also, among the minority community, especially in the African American community, a distrust of researchers. Memories of the Tuskegee Syphilis Study, where black men were intentionally harmed for research and the use of Henrietta Lacks’ genetic information without consent or compensation continue to sow mistrust.

Even with the issue of mistrust, I think there is a more than ample supply of sick minorities desperate for a cure willing to participate in potentially life-saving trials.

​Researchers conducting clinical trials have an ethical and moral obligation to ensure that Black lives, Hispanic Lives and Asian lives matter when it comes to cutting-edge research. They have an obligation to ensure inclusion, not just to ensure trials are “open to” minorities. Based on the UC Davis study, the idea that trials today are “open to” minorities is like the idea that Berkshire Hathaway stock is open to all buyers (the stock’s price on April 7 was $215,500 per share). The reality is, in both cases, being “open to” is not particularly meaningful given the actual participation rate.

Including more minorities in clinical trials is very doable. However, it means more than just having “outreach programs.” It means having effective outreach. To have effective outreach, researchers must cast a wide net. The Duke study referenced earlier reached at least from North Carolina (where Duke is based) to Georgia and as far as Idaho (based on the patient info featured on 60 Minutes).

While it’s easy to be satisfied that one has given it the good ole college try, this is not acceptable when it comes to saving people’s lives. A college try that results in the same old same old (the 5 percent listed in the UC Davis study) is just not acceptable. More needs to be done to ensure the makeup of clinical trial patients is the same as the makeup of patients affected by the disease being studied. In clinical trials, minority lives need to start mattering. Not just in theory and outreach, but in the realities of patient selection. 

R.J. Crayton is a novelist living in the Washington, DC, metropolitan area. More information is available on her website.



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