The issue of parity along ethnic lines when it comes to participation in groundbreaking clinical trials is quite real for me.
(NNPA) – 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), I’ve witnessed several of them up front – close and personal. I have actual genuine 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, and many of them along racial lines that should be addressed. For myself, I’ve been to clinical trials not because of cancer, heart disease or hypertension, but because of depression; and I’m not embarrassed or ashamed to say so. 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 attain 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 can go with it and that becomes passed down to our current generations, Blacks are the first group in our country who needs to be treated for their mental health issues, but are the last group to go out and 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 became attractive for me with clinical trials was the reality that I have always been in a low-income status and working with small businesses with very tight budgets. Therefore have rarely been able to afford or attain any form of health insurance or benefits. I have been able to receive treatments and medication at little or no cost, much less than traditionally 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 with for close to a year. This therapist did indeed help me deal with and work to resolve some personal issues in my life, in which I’m grateful. That is, however, until I discussed my racial battles and experiences. I expressed to this therapist my stories where I either suspected that I was discriminated against or that I flat-out knew that I was an object of racist practices. My therapist, a well-meaning White female, showed a look on her face that said it all: she didn’t know how to help me 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 plights. Her body language and words showed that she couldn’t even do that. This was perhaps not out of a flat refusal to understand, 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 to that person; he or she might not necessarily agree with me completely, but they would at least acknowledge and understand. 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 jumped up at me through another situation. I went to apply for yet another clinical trial that I knew about from reading their advertisement in a newspaper. I called the clinic, set an appointment, went there, filled out an application and interviewed one of the employees. I went back a second time, only to find out that my scores calculated through the application process did not qualify me for their specific treatment program. However, on both visits, I saw something very glaring. 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 Latinos. There was one Black working there, she was picking up the trash and cleaning the restrooms. That’s a distinct disparity that stood out to me. Interestingly, in this case, there were a high number of Blacks applying for this clinical trial, but not any one of the medical professionals treating them looked like them. The advertisement, a small classified ad, was in an African-American-owned newspaper. That showed that there are clinics that 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 about just getting a contract, having a job and making a buck, in comparison to actually and sincerely desiring to help their 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 cases have not been 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 me or my family. Well, that is … at least … I don’t think I have. Copyright 2010 NNPA
About Post Author
