Sickle cell disease or anemia is a group of disorders, which is an inherited red blood cell disorder in which there are insufficient healthy (normally shaped) red blood cells to carry oxygen throughout our body (https://mayocl.in/2Gdue1R).
The abnormally shaped red blood cells can shorten life expectancy due to possible strokes, organ damage, and lung disease.
Patients can suffer from symptoms such as anemia, pain episodes (joints, etc.), common infections, swelling of feet/hands, delayed growth/puberty, vision issues, etc.
Sickle cell disease, which is due to a genetic mutation, is most common people whose ancestors come from much of the Sub-Saharan Africa as well as Mediterranean countries (e.g., Greece, Turkey, Italy, etc.), Arabian Peninsula, India, South and Central Americas, and parts of the Caribbean.
In Canada, there are about 5000 Canadians, including children (https://bit.ly/2SqcX84).
This being said, this post is about a CBC article/radio segment entitled “ER a ‘last resort’ for sickle cell patients who face racism when seeking care, says advocate” (https://bit.ly/3jtxSmu). The underlying message here is that our healthcare system is systemically racist (i.e., stigmatizing) against sickle cell patients because they are black. It features one patient and advocate (see below). It is based on her own story (of visits to the ER during the pandemic) but it generalizes it to the whole 5000 Canadians living with sickle cell disease.
Ms. Weikle’s CBC article cites a systematic review on the health-related stigma of patients with sickle cell disease to support her statement that “stigma and racism are well known”: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6186193/
Systematic reviews are considered the “gold standard” of evidence in the medical literature. However, this systematic review is published in a low-impact journal and has many limitations. For instance, the review includes 27 studies located in different parts of the world, including Nigeria, Jamaica, and Brazil, in addition to the United States (none in Canada). How can we expect the experiences of patients living in Africa or South America to be comparable to those of patients living in other countries (i.e., USA) and to be generalizable to Toronto, Canada? The included studies are about patients who are both youth and adults. Again, their experiences and the impact of any stigma is not comparable between adults and adolescents/youth.
Of note, Toronto is the largest most cosmopolitan (i.e., diverse) Canadian city. Thus, healthcare providers likely more frequently encounter patients with sickle cell diseases or similar conditions (e.g., thalassemia). Healthcare providers are also likely more diverse than in smaller Canadian villages. Some may be from Africa, Lebanon, Palestine, Israel, Italy, Greece, Saudi Arabia, etc. Thus, more familiar with similar conditions, as described below.
Related to the above point, if she may, Bambi will share her own story here (she does not mind). She has been a patient in four different provinces (Québec, Ontario, Nova Scotia, NB). In each of these jurisdictions, she experienced excellent and sensitive care concerning what falsely appears to be a trait for a red blood condition called thalassemia (mentioned above).
Thalassemia, which is also inherited (passed from parents to children through genes) is due to the body’s inability to make enough of protein called hemoglobin, which is a key part of red blood cells. Traits for thalassemia are more common in Canadians from Mediterranean countries, like Lebanon, Greece, Turkey, Italy, Palestine, Israel, Syria, etc. Some Canadians from Africa as well some parts of Asia and the Middle East (not a Mediterranean country) may also have traits.
Anyhow, no worries, Bambi does not have thalassemia. Mind you, she would have known that since childhood, as blood transfusions would have been needed. She does not even have any thalassemia traits, the false appearance, so to speak.
Indeed, in almost every province she did blood work for different reasons, even when results are normal, her blood seems to appear slightly different (less “red” and with differently shaped red blood cells). Sometimes, it was assumed that she had anemia, but after iron supplementation, no change in her hemoglobin levels would occur. Almost every time, she would receive a call, after lab work, telling her that, given her genetic ancestry, she may wish to be tested for thalassemia traits (the milder form). Well, in Ontario, her family physician went over and beyond herself to solve this mystery. She even asked her if she can ask her mother to send her an example of her own blood work results from abroad. She even ordered a full molecular genetic testing. It turned out that Bambi truly has nothing, despite her weird red blood cells. Bambi likes to joke, repeating that she has this form of red blood cells in solidarity with her former fellow Mediterranean citizens ? (In Greek, “thalassa” and “haema” mean sea and blood respectively; hence the name of the health condition of thalassemia common in Mediterranean countries).
OK, you may perhaps think: Oh well, Bambi’s experience was more positive because she is not black. She will sarcastically reply: Maybe, but remember, she is supposed to be a BIPOC deer ?. The latter is that funny acronym that makes Bambi smile each time because she refuses to be reduced to a label (even it can make her a “holier” deer, so to speak). As a reminder, this term means “Black, Indigenous, and People of Colour”. Mind you, if you think that her story is unique, she will share that her Torontonian friends with traits for thalassemia also had the same positive experiences as her.
Does that remove anything from the experience of the patient and advocate featured in the study, Ms. Serena Thompson. Of course not! Bambi wishes her ALL the best (hopefully no more pain!!) whilst thanking her for bringing awareness about sickle cell disease.
To conclude this post, please let us keep our critical sense alive… She does not know about you, but Bambi finds it worrisome and is highly disturbed by the infiltration of racial ideologies in our medicine.
