Growing up, I remember being warned about a genetic disease prevalent in people of African descent (PAD) and being tested via a prick to the finger. While speaking casually with different PADs in Denmark, mostly those born in Denmark or who had lived here for many years, I was shocked to hear that they had never heard of this genetic disease. So, I began to do a bit of research and the results, well… .
Millions of people worldwide are affected by or are carriers of genetic hematological (blood) disorders. These disorders are mostly prevalent in people of sub-Saharan Africa, India, Saudi Arabia or Mediterranean ancestry. Due to colonization, slave trade, migration, etc. large numbers of affected people can be found all over the globe with markedly high numbers in the Americas and England (which would explain me learning about it). In this article, however, I am going to focus on one disorder, sickle cell anemia (seglcelleanæmi).
What is Sickle Cell Anemia?
Sickle Cell Anemia is a genetic blood disorder in which the blood cells that carry oxygen to the various parts of the body become deformed, like a sickle or half-moon, making the blood cell unable to do its job. If a child receives the sickle cell gene from one parent, then the child will have the sickle cell trait. If a child receives two sickle cell genes, one from each parent, then the child will have the sickle cell disease.
People with the sickle cell trait can lead completely normal lives without any symptoms, however, under extreme physical conditions, like severe dehydration or high altitude conditions, the body may, in its stressed state, start producing the deformed sickle blood cells, causing serious health problems and, in rare situations, death. People with the sickle cell trait can pass the trait on to their children.
Sickle cell disease, on the other hand, can be a death sentence if it is not diagnosed and appropriately managed. Globally, 300,000 children are born every year with the sickle cell disease. The World Health Organization refers to sickle cell disease as having an “under-five” mortality, meaning affected children usually die by the age of 5. Appropriate diagnosis and disease management can prevent this, however it can never be cured.
In sickle cell disease, the body produces many of the abnormal sickle blood cells. The abnormal blood cells cannot perform its job of carrying oxygen to the various parts of the body. The body will try to produce more blood cells to compensate, however, it will ultimately be unable to keep up and parts of the body will become oxygen starved and begin to shut down. The abnormal shape of the cells can also cause blockages in blood flow causing extreme pain in the affected individual.
Sickle Cell Patient Experiences
https://dsr.dk/sygeplejersken/arkiv/sy-nr-2009-8/en-families-forbandelse
Because of the seriousness of this illness, The World Health Organization recommends appropriate national policies, screening, and health education.
We are living in a time with increased migration and where individuals can have mixed ancestry. There is therefore no way to know, based on a person’s nationality or looks, whether or not that person has the sickle cell trait due to their ancestry.
So what about Denmark?
In 2005, a program for screening pregnant immigrant women was implemented in Århus. The Danish Health Authority conducted a three-year health technology assessment of this program and published its findings in 2009. According to the assessment, a program for sickle cell screening already existed in Copenhagen, however the Århus program would cover a larger area. In the program, pregnant immigrant women were screened and if blood tests showed a blood disorder, then the father was to be screened as well.
The Århus screening program showed that very few of the screened women (2%) carried the sickle cell trait. However, the assessment also stated that this number was probably too low as the program had organizational challenges that impacted the results. Women not in the target group were referred to the program and only a third of the women who should have been examined, were examined. However, the conclusion of the assessment was, among other things, that “it is cost-effective to establish and run a screening program in the parts of Denmark with a relatively high number of immigrants”.
More recent studies, looking at the prevalensce of sickle cell in Denmark show that from 2000 to 2015, prevalensce of sickle cell trait increased 11 times while prevalensce of sickle cell disease increased 5 times.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7247725/
Conclusion
Considering the opinion of The World Health Organization and The Danish Health Authority, it is concerning to hear PAD woman after PAD woman, who gave birth after 2009, say that they have never heard of sickle cell anemia and do not believe that they were ever screened for it nor informed of it by their doctors. My friends began to ask their friends and so on and so on and then it was unmistakeable, a majority of PADs are neither informed nor are they being screened. Of the PADs asked, who had at least one PAD parent and who had a child after 2009, our informal questioning revealed that:
– 2 out of 17 responded that they knew about sickle cell and discussed it with their doctor
– 3 out of 17 responded that they knew about sickle cell, but via private channels and not via the Danish health system
Others, who gave birth prior to 2009, said that they never heard of the disease although both they, and their partner, were clearly at risk for being carriers. The most unfortunate response was a friend who told me about losing a young family member. The child had been ill from birth, but the illness baffled Danish doctors. After some time, the doctors began to suspect sickle cell, but it was too late to save the child.
What to do?
Through our work at Afro Empowerment Center, we hope to conduct a proper survey of the PAD community in order to determine if the above results are accurate.
My low-key questioning of friends also showed that many PADs from USA, England, Ghana and other countries with health education programs, which include health concerns of PADs like sickle cell, were all well aware of the illness and its symptoms. They were therefore prepared to take action if their children should show any signs of the illness. By including local PADs in developing health education programs and projects, Denmark can ensure that addressing this disease will not only be up to the doctors. We would also have a well-informed PAD community able to inform their doctors of their at-risk status, initiating what could be a life-saving discussion for a young child.
Afro Empowerment Center supports ratification and implementation of CERD34, recommendations by the UN on how a state-party can actively combat discrimination against people of African descent. Paragraph 56 of CERD34 states:
“Involve people of African descent in designing and implementing health-based programmes and projects.”
If you are a Danish citizen, you can sign Citizen Proposal, “Ratificér CERD34”, and ask Denmark to address the recommendations contained in CERD34.
https://apps.who.int/gb/archive/pdf_files/WHA59/A59_9-en.pdf
https://www.hematology.org/education/patients/anemia/sickle-cell-trait
https://www.borgerforslag.dk/se-og-stoet-forslag/?Id=FT-05309
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