In the summer of 1904, a Grenadian embarked on a journey to Chicago to attend dental school. The student, Walter Clement Noel, upon arriving to the United States was plagued with health complications requiring his internist to perform a blood smear, a relatively new technique not frequently used in diagnosis. This gave rise to the first documented finding of sickle cell-shaped blood cells which was presented to the world in a case study in 1910.
Almost 100 years later, a Chicagoan receives admission to a graduate program in Grenada, only to complete a thesis on sickle cell and chronic pain in the country that gave birth to a man whose blood gave name to a chronic disease.
In science and research, life and circumstances often influence and shape your focus. A son who lost his mother to breast cancer is propelled to devote his energies discovering oncogenes. An impressionable college freshman is captivated by her professor and his research resonates in her own through the years. Inspiration can often be quite predictable. With me, however, someone with no prior exposure or bearings on any blood disorders, I have to believe that sometimes the research chooses you, a phantom deliberately lighting paths and dimming others, making you falsely believe your decisions are truly your own.
A little more than a century separate the opposite journeys that Walter and I took. And yet in that chasm of time, I’ve learned that just because we’ve given a disorder a name does not translate to a cure or even a standard global practice in managing the pain. My thesis helped me more than becoming a published primary author this past summer; it opened my eyes into seeing firsthand how medicine is much more than just biology, but also one part sociology, one part politics and policy, one part psychology, and even some parts geography.
This can be demonstrated by the complexities of managing pain. Pain is one of the most common if not the most common reason a person comes to see a physician. Yet many patients still often remain undertreated for their chronic pain in both developing and developed countries. Why? The question is simple but the answer rarely is. Stigmatization of patients with chronic conditions becoming addicted to painkillers is part to blame as well as countries using legislature to stronghold this belief by limiting access to more effective pain medication. Geography and education can also create health inequalities, especially in terms of adequate pain treatment among chronic disorders such as sickle cell.
Most of the patients I interviewed for my study overwhelmingly agreed that the mismanagement of their pain impinged on their day-to-day life. And why wouldn’t it? It inhibits not only the minutiae of your daily life but your longterm commitments as well including completing your education, establishing fulfilling relationships, and maintaining a steady occupation. Your productivity is severely retarded in every single way.
This was easily proven when I interviewed an especially willing research participant that travelled a considerable distance one stifling afternoon to come see me in person, even after I told him most of my interviews were conducted over the phone. In a tiny office crammed down an alleyway, easily overlooked in the sprawling capitol of St. George, sat the headquarters of the Sickle Cell Association of Grenada (SCAG). Right next door was a ravaged church building, a product of the 2005 Hurricane Ivan, that also included a superb view of the Caribbean Sea. That was the thing about Grenada: you could be in the most sordid of conditions but still have a million-dollar view.
I sat with my standard questionnaire in a tiny, banana-colored room that I currently shared with a steely, gray-haired, small-framed, retired nurse who headed the SCAG. She was on the phone, giving an earful to a poor soul on the other line whose offense had been to report that a grandmother had requested a hysterectomy on her 16-year-old granddaughter who suffered from sickle cell. The granddaughter was otherwise in good health, but the grandmother felt it imperative that she stop the passing on of the hereditary disorder down the family tree. Sitting in anticipation of my subject, I too was baffled at the extreme and uninformed precaution taken by the grandmother. I simply couldn’t understand it.
Once my participant arrived, my questionnaire soon morphed into a conversational tone as he willingly poured out his trials and hardships as a direct result of his mismanaged sickle cell pain. He found out he was a “sickler” when he was 12 years old and has received countless blood transfusions since then to help combat his sickle cell crises that occurs every so often when his blood clots due to the abnormal shape of his red blood cells.
After our talk, I felt skeptical that within a population of 100,000 dispersed throughout the island that the need of blood donations was being met. This motivated me to do my own part and donate blood anonymously for the interviewer in the hopes that it might be a match for him or any patient like him.
So I made the uphill trek from SCAG to the General Hospital located literally on the edge of a cliff. The views from the wards could rival that of a five-star resort, but the balmy disposition did little to soothe some of the patients inside. I walked over to the room designated for blood donations, filled with 2 young, shrewd nurses, and requested that I be tested to match for any sickle cell or other patients that require frequent blood and plasma transfusions.
Midway through the process, one of the nurses complimented my decision, citing how many “sicklers” much like my participant were in need of these donations. Immediately, the other nurse added what a shame it was that so many “sicklers” were still procreating, after seeing firsthand the effects of their disease. The other nurse silently acquiesced her own disapproval. That would be the second time that morning that I was dumbfounded.
Here they were: two young, educated women capable of administering care to a vulnerable, unhealthy population but also capable of denying procreative rights to people whose disease was not a choice. Yes, this disease is crippling, but it can also be manageable. However, if these women could hold such reasoning, it wasn’t too far off before such perceptions trickled down the socioeconomic spectrum much like groundwater. Before you know it, a grandmother with limited means and an even limited education on the other side of the island wants to take her 16-year old granddaughter in for an unnecessary hysterectomy, with little regard for what may happen when the 16-year old turns 26 or 36, meets someone, and decides to have children of her own. While genetic testing was a much better alternative to screen potential risk of passing on the defective gene, it isn’t always cost-effective or available.
Sitting there, getting poked and prodded with a needle, I realized how our health can sometimes be at the mercy of so much more than just our own lifestyle and decisions. A disease dictated by our genes is only rendered more uncontrollable when worsened by the laws and beliefs of a society bent on little empathy and much more victim-blaming.
This post has been 3 years in the making, and it’s been both a personal and professional journey delving firsthand into the complexities of managing global health. The line between healing and hurting our patients is often far more blurrier than one imagines and while almost all medical students start their journeys with the universal oath of “doing no harm,” often times, doing nothing can cause far more harm. This is dedicated to all those who suffered silently under a nameless disease before Walter Clement Noel and to those, much like Walter Clement Noel, who currently suffer more than just physically from a disease that gained a denomination but still no cure.