Trials and Errors: A Personal Testimony
Gordon Jackson | 10/13/2010, 1:40 p.m.
The issue of parity along ethnic lines when it comes to participation in groundbreaking clinical trials is quite real for me. The delicate and in-depth issues being addressed by the National Bioethics Center at the University of Maryland Medical School in Baltimore (UMSOM) is real. I've witnessed several of them up front, close and personal.
I have actual experience with clinical trials and while there have been some definite positives and benefits for me, I have still come away with mixed feelings about their effectiveness, particularly for me as an African American. I have noticed enough imperfections about clinical trials, many of them along racial lines that should be addressed.
I've been to clinical trials not because of cancer, heart disease or hypertension, but because of depression. I'm not embarrassed or ashamed to say it. That, by itself, raises an important health issue in our African American community, which is the fact that a much lower percentage of Blacks reach out to get treatment for mental illness than our White counterparts. That makes for a vicious irony for African Americans.
Due to the vestiges of slavery, lynching, cross burnings, Jim Crow and blatant discrimination throughout our lineage and ancestry, compounded by the extreme oppression and humiliation that goes with it, when depression occurs, it is often passed down to the next generation. Blacks are the first group in our country who need to be treated for their mental health issues, but are often the last group to get it. It's a deeper stigma for us. We've been taught - or brainwashed, depending on your perspective - to just "deal with it."
What attracted me to clinical trials was the reality that I have always been in a low-income status, largely due to working with small businesses with very tight budgets. Therefore, I have rarely been able to afford any form of health insurance or benefits. I have been able to receive treatments and medication at little or no cost, which is considerably less than paying a doctor. That probably applies to a lot of African-Americans.
In one case, I was fortunate to be assigned a psychologist with whom I had bi-weekly sessions for nearly a year. This therapist did indeed help me deal with and work through some personal issues in my life for which I'm grateful. However, when I attempted to discuss my racial battles and experiences with this therapist -- a well-meaning White female -- she showed a look on her face that said it all: she didn't know how to help me.
Maybe she did not know how to address these types of matters or, maybe, she didn't want to believe that I was a victim of racism. After all, if she did, it would confirm that there is still racism in our society.
Knowing that she was Anglo, I only expected her to try and understand my plight. Her body language and words showed that she couldn't even do that. This was perhaps not out of a flat refusal to understand me, but possibly out of a strong degree of unawareness or even ignorance. I came away thinking: If my therapist was Black, I'm certain I would have felt more comfortable expressing my issues of race.
He or she might not necessarily agree, but they might have more acknowledge and understood. Most likely, there would have been no rejection or resentment, conscious or sub-conscious. That has raised the question for me: Why aren't there more Black health professionals, doctors, psychologists, nurses and medical assistants, working in these clinical trials? That could be the reason there is a lack of Black patients in these studies.
That question leaped out at me again when I applied for yet another clinical trial advertised in a newspaper. I called the clinic, scheduled an appointment, filled out an application, and was interviewed by one of the employees. I went back a second time, only to find out that my scores did not qualify me for their specific treatment program.
However, on both visits, I saw something interesting. Every patient who went in and out of that office was an African-American. Yet, all of the professionals that I observed working at the clinic were all White, except a couple of Latinos. There was one Black working there, she was picking up the trash and cleaning the restrooms. That was a distinct disparity that stood out to me.
I found a small classified ad in an African-American-owned newspaper. That showed the clinics know how to reach the African-American community, but do they know - or even care - about how to effectively treat them and find solutions to their disproportionate health issues? Are the clinics and medical organizations involved in these clinical trials much more interested in getting a contract in comparison to actually and sincerely desiring to help patients?
In some cases, it may turn into a chicken or the egg scenario. Are there too few Black patients because there are too few Black health practitioners in clinical trials, or vice-versa?
I realize that my case is not severe, in comparison to the historic horror stories that have made headlines. I have not been deprived of penicillin for syphilis, as was the case in the infamous Tuskegee Experiment. Nor have I had Plutonium or "hepatitis milkshakes" injected into my body, as was the case with the Willowbrook State School Study of the 1960s or the Human Radiation Experiments of the 1940s.
Nor have I had my genes or DNA stolen by laboratories and turned into millions of dollars in profits for them, as with the case of Henrietta Lacks, with not a penny coming back to my family or me. Well, that is ... at least ... I don't think I have.
Gordon Jackson is managing editor for The Dallas Weekly Newspaper. "Clinical Trials: A Legacy of Shame and Fear Addressed in 2010" is an eight-part series resulting from a partnership between the University of Maryland Bioethics Research Center and the NNPA Foundation.