Why is Sickle Cell Anemia an “extra-protected” disease status under HIPAA?


I work in IT for some departments which handle HIPAA data at my job, so we’re required to take HIPAA training each year. One section of the training mentions that there are some conditions which have an additional layer of laws and protections around them, and medical providers, people who interact with patient data, etc are asked to be extra cautious about potentially revealing that a patient has them. Most of these conditions were things which have established social stigmas, such as STDs and whether or not someone is HIV positive. However, the last condition on the list was Sickle Cell Anemia. I’m not personally aware of any social stigma attached to any kind of anemia, so this struck me as odd. I assume I’m missing some cultural history or awareness here. Thanks in advance everyone!

In: 4

Sickle cell anemia is more common in black people (it’s a byproduct of a gene that makes you more malaria resistant, which for obvious reason is more common among people of African descent), so my guess is just that any disease coupled to something like race that you could potentially be discriminated over is extra restriced.

I’m curious about this answer, too. I know it’s carried genetically, does that have something to do with it?

Sickle cell is due to being of African heritage. Since it is a by product of malaria resistance.
Maybe an ethnicity related condition?

Is Tay Sachs disease also as protected? Just curious

Other answers have guessed in the ballpark, which is that sickle-cell disease in the US is overwhelmingly an African-American disease (or as one paper put it, “THE black disease” which symbolizes a lot of the best and worst experiences between the medical establishment and Black Americans–that’s a whole other post.) Accordingly, it’s at risk of discrimination. What they’re missing is how serious that discrimination got.

Flash back to when testing was first available for SCD. While it might have seemed like a big advance in terms of diagnosis, employers treated it with their usual degree of tact and thoughtfulness. That is to say, they didn’t want to hire anyone with a serious chronic disease. Rather shamefully, they also discriminated against people who tested positive for sickle TRAIT, which is a mostly-harmless adaptation against malaria and which causes literally zero problems in work functioning. The whole thing was pretty stupid.

Accordingly, one of the often-overlooked goals of the civil rights movement was the option to avoid sickle cell testing or have greater confidentiality. It was a question of whether black people could avoid one more source of job discrimination. While sickle-cell is now better recognized as a somewhat manageable genetic condition, there was a time when even having a related blood test meant you were out of work.