I know clinical trial participation is crucial, but I still hesitate to join

Why I struggle to contribute to research as a Black sickle cell patient

Mary Shaniqua avatar

by Mary Shaniqua |

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A few weeks ago, I attended a sickle cell awareness event for pharmacists. I was simply there as an interested sickle cell disease patient; I don’t work in the pharmaceutical industry.

One major topic of discussion was the lack of progress toward cures for sickle cell disease. While two types of “curative” therapies have been approved — stem cell transplant and gene therapy — many patients face barriers in accessing these treatments. Stem cell transplants also carry “significant risks,” as the National Health Service website notes.

Then a tangential discussion about clinical trials emerged.

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Clinical trials are a type of research study that tests how various interventions, including new treatments, affect people. They’re important for evaluating a therapy’s efficacy, safety, and impact on human health outcomes. Clinical trials are a necessary step in bringing new treatments to market.

It was a rich discussion that highlighted pharmaceutical companies’ lack of incentive to invest in sickle cell treatments, in part because of the difficulty of getting enough patients to volunteer for trials. Essentially, there seems to be a lack of willingness from sickle cell patients to participate in them.

I must add to this point by saying that I haven’t been able to find statistical data online to support it. The rhetoric may be based only on anecdotal experiences. Nevertheless, two facts remain: New treatments for sickle cell have progressed at a snail’s pace, and researchers need willing participants for trials.

Navigating obstacles in clinical research

If we’re ever to see greater progress with treatments, it’s imperative that sickle cell patients engage in clinical research. Our input helps to ensure that new therapies sufficiently meet our needs.

Although I theoretically accept that reality, my mind and heart feel differently. It’s why I believed what members of the pharmaceutical industry were saying about our lack of participation in trials. They were talking about me!

I concede that patients need to participate in trials, but unfortunately, it’s not that simple. While people of any race can inherit the gene variations that cause sickle cell disease, statistics show that most sickle cell patients are Black. Decades of prejudice and abuse toward Black people in healthcare settings has resulted in a heightened mistrust of medical professionals within the Black community.

That’s something I grapple with personally.

Because of a multitude of bad experiences, I’m terrified to go to the hospital for critical care when my body requires it — a common occurrence for many with chronic conditions. I struggle immensely with trusting healthcare professionals unless I have a positive relationship with them. If navigating the emergency department and unknown medical personnel conjures up fear for me, why would I participate in a trial?

Again, I understand the need for clinical studies, but the idea frightens me.

This topic has been weighing on me recently, and I continue to wrestle with the pros and cons. That said, I’m not aware of any clinical trials that are recruiting near me, so hopefully I’ll have plenty of time to gather my thoughts before one pops up on my radar.

I cannot stress enough the need for integrity and compassion when dealing with patients. When those elements are missing, a patient’s pain and fear won’t end at discharge. We carry those burdens with us and remember every traumatic encounter, which can impinge upon necessary medical advancements when scared patients like me don’t participate in trials.

As a sickle cell patient, how do you feel about clinical trials? Have you participated in any? Would you consider participating in them? Please share your thoughts in the comments below.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


Alpha Diallo avatar

Alpha Diallo

I'm a 50 years old sickle cell patient. I have my share of mistreatment from healthcare professionals but I'm hoping that will one day I join a clinical trial for the greater good. My willingness to join does not negate my fear and mistrust of these professionals but at this day and age sickle disease must be cured. The advancements in the medical field are enormous yet too many are still suffering with sickle cell disease.


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