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Sickle Cell Awareness Month

By Wivine N

When I was asked to write a blog post on sickle cell disease (SCD) for Sickle Cell Awareness Month, I was ecstatic and over the moon. Finally – being asked to write on a topic that probably occupies the most space in my heart. But admittedly, it took a long time for me to sit down and put thought to paper. How do I convey the emotions that come with watching a dearly loved one be rejected at the hospital door when cries of silent suffering is painted over with perceptions of undo attention? Where does one begin when they want to educate a generalized audience about yet another really painful thing that fate marries some of us to – an audience from which most will likely never see or feel its impacts behind a neighbor’s closed doors. How do I put to words a mother’s suffering? A village left with one less child to nurture? Is it only through a long written assignment from a Master of Public Health course where the opportunity exists to extensively map out how negative provider attitudes and behaviors towards patients with SCD, stigmatizations of patients’ care-seeking behaviors, and uncertainties over how to treat Black/African American patients lead to frequent hospitalizations or a vast underreporting of symptoms? Which leads to increased risk, frequency, and severity of SCD complications? Which can lead to all kinds of quality of life indicators, including death?

Rambling and thinking out loud now.

But, maybe I could showcase my research around when I obtained and reviewed medical record data of people living with sickle cell disease in Colorado to determine whether the use of effective ketamine administration reduces high opioid doses often required/requested in a severe sickle cell pain crisis. Or my years in a laboratory, crafting synthetic polypeptides as an anti-sickling approach that would increase the blood’s affinity for oxygen. I have even thought about writing on the countless other facts I’ve learned in my MPH studies, like how family medicine physicians are generally uncomfortable with managing SCD, in part because of having to interact with African American individuals1 – or how an interesting cross-sectional, comparative analysis of the National Hospital Ambulatory Medical Care Survey between 2003 and 2008 showed that African American patients with SCD experienced wait times that were 25% longer than the General Patient Sample.2

One sickle cell fact I know I love sharing is – the funding disparities for sickle cell compared to other diseases are quite notable. This is explained in part by the large gap that exists in private and public funding for clinical research between diseases affecting Black and white populations in our country.3 For example, cystic fibrosis (CF) is a genetic disorder that affects about 30,000 persons, compared to 100,000 affected by SCD.4 From a different perspective, 90% of individuals living with CF are white while 98% of those living with SCD are Black.3 Like SCD, CF is a major cause of morbidity and mortality, worsens with age, requires strict drug regimens, results in intermittent hospitalizations, and reduces life span.5 And despite these similarities, there is a large disparity in support funding between these two diseases, with CF receiving four times the amount of government funding from the National Institutes of Health ($254 million) compared to SCD ($66 million).4,6

Too heavy. Let me step back and start with my mom.

My mother is an African immigrant from the Democratic Republic of Congo who spent the first twenty-two years of her life in Normal, Illinois braiding hair. Her central-African aesthetics, combined with her intricate fingering techniques and keen eye for perfection, quickly made her a reputable go-to hair braider for the African American communities in the Bloomington-Normal area for years. A single appointment often took several hours at a time and my mother spoke very little English. So naturally, she played a listening role as her clients shared anecdotes about their lives and of their children’s. A recurring theme that often intrigued me as I sat in the corner coloring or doing my homework was a general distrust and distaste for Advocate BroMenn Medical Center, the largest hospital in the Bloomington-Normal area. This hospital seemingly had a bad rep in the local African American community for what might formally be described as provider implicit biases and culturally incompetent care. But, my mother’s clients were very blunt in their accounts and called it for what it was – racism. As it turned out, racism was only one of many health care provider factors that formed these views; others included neglect, bias, and prejudice.

Neglect left my sister in a 10-day coma at the age of 8. Prejudice and utter disregard caused her to miss almost two years’ worth of education by the end of high school. Bias (and arguably, lack of competence by medical providers) led to one stroke by the age of 21 and another impacting the other side at the age of 24. And racism aggressively prevented her from getting the ultimate treatment from this disease she needed and wanted.

Up until now, the millions of words I’ve put to paper around anything having to do with sickle cell have always formed around the context of disease, sadness, racism, poor treatment, and death. But what I appreciate most about the timing of this blog post – about it being Sickle Cell Awareness Month in the year 2022 – is that I finally have something quite wonderful to write about. For years, I have followed the leaders of sickle cell treatment and research. I have traveled to learn from the best, curate a knowledge base of ways to facilitate my sister’s treatment and bring it back home. In 2018, I left Colorado to live near my sister in Illinois. I met with research leaders of the Hematology & Stem Cell Transplant team at the University of Illinois at Chicago’s Hematology/Oncology Department – the same leaders that have rejected my mother’s plea – to claim our space. Throughout 2019, I have worked closely with a lead nurse practitioner (NP) to help ensure that my sister attended her million-and-one appointments that would measure her viability to receive a transplant. In 2020, I received a phone call from said NP who, with happy tears, asked if I wanted to be my sister’s stem cell donor. Also in 2020, I donated my stem cells, something I couldn’t have done up until a couple of years prior due to only being a half match, and then moved back to the mountains I love. And in 2021, one year after donation, her body had fully accepted the stem cells – which came with a medical stamp of confirmation. Today, Amy is free from her sickle cell disease and living life as she had envisioned for herself. For the first time.

I am grateful to Colorado Access for the opportunity to write about sickle cell in a positive context – for the first time. For those who are interested, feel free to click on the link below to hear my sister’s and mom’s stories, straight from the source.

https://youtu.be/xGcHE7EkzdQ

References

  1. Mainous AG III, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Attitudes toward Management of Sickle Cell Disease and Its Complications: A National Survey of Academic Family Physicians. 2015;853835:1-6.
  2. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. The Impact of Race and Disease on Sickle Cell Patient Wait Times in the Emergency Department. Am J Emerg Med. 2013;31(4):651-656.
  3. Gibson, GA. Martin Center Sickle Cell Initiative. Sickle Cell Disease: The Ultimate Health Disparity. 2013. Available from: http://www.themartincenter.org/docs/Sickle%20Cell%20Disease%20 The%20Ultimate%20Health%20Disparity_Published.pdf.
  4. Nelson SC, Hackman HW. Race Matters: Perceptions of Race and Racism in a Sickle Cell Center. Pediatr Blood Cancer. 2012;1-4.
  5. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. The Impact of Race and Disease on Sickle Cell Patient Wait Times in the Emergency Department. Am J Emerg Med. 2013;31(4):651-656.
  6. Brandow, A. M. & Panepinto, J. A. Hydroxyurea Use in Sickle Cell Disease: The Battle with Low Rates of Prescription, Poor Patient Compliance, and Fears of Toxicities and Side Effects. Expert Rev Hematol. 2010;3(3):255-260.