Lupus can affect anyone. And although this is true, we do not want to ignore the fact that lupus disproportionately affects certain people. We have discussed how it affects young women, but we haven’t discussed how it affects young Black women. Lupus affects 1 in every 250 Black women and when compared to the white community, the prevalence of lupus in the Black community is 3-4x higher. It is well established that Black lupus patients tend to be sicker, need more aggressive medications and have worse outcomes. And despite the amazing advancements in testing and treatment, Black patients don’t benefit from those advances to the same extent as their white counterparts.
Searching for the “why”
Although the rheumatology community has acknowledged theses differences for years, the reasons are still unclear. There are many researchers who are looking into this and just as many theories. Genetic studies seemed like a natural next step. There have been genes isolated that confer higher risk of kidney disease in Black lupus patients, but this most likely does not explain everything. Moving alongside traditional genetic research (where the search is focused on finding “the gene”), is research into epigenetics. Epigenetics is the study of when and how certain genes get turned on or expressed. Just because an individual has a “bad gene” does not mean they are destined for any particular outcome. Of course the data on this is more nuanced. But suffice it to say, genes likely do not explain the disproportionate numbers of Black Americans with lupus.
Notice, I said Black Americans. What about the Black communities around the world? We know that in the UK, the numbers are similar to the US. However getting reliable incidence and prevalence numbers from parts of Africa, especially West Africa, where many Black Americans descend, is difficult as their health care systems are not as equipped to do this kind of research.
So if genes aren’t the answer, what is? Well socioeconomic factors likely contribute. Pollution, lack of diverse food options and poor access to health care are all realities of many Black communities. But is that enough to explain the stark differences seen in lupus? One answer may lie in emerging data looking at the effect of racial discrimination itself. When viewed through the lens of trauma, it makes sense that racial discrimination could lead to higher rates of disease. Trauma has been linked to higher rates of disease and racial discrimination, whether it be acute and overt or subtle and chronic, is now being recognized as trauma.
We still do not understand this concept fully. More research is needed to better understand how various factors, such as education, social support and family life impact these results. However, what we now can see is that this element of the lupus research cannot be ignored any longer. Being overly focused on genes or on social policies may provide some insight but if data continues to show racial discrimination itself impacts rates and severity of lupus, then the racial reckoning started with the murder of George Floyd is crucial. To hear more about this topic, please watch this week’s video and share with anyone you think could benefit from this point of view.
As always, in good health,