How Come Sickle Cell Anemia Doesn’t Have An Ice Bucket Challenge?

May 8, 2015  |  

The progressive-leaning website Mother Jones has an excellent piece about a little-discussed lifelong inherited disease, which is desperately in need of both funding and awareness.

No, I’m not talking about ALS, so you can put your ice buckets down – and stop wasting water. California is dry enough. I’m talking about sickle cell anemia. You know, the serious blood disorder, which affects an estimated 70,000–100,000 people, 90 percent of which are African American? The genetic disorder, where an estimated 1 to 3 million Americans (again, mostly people of African, Hispanic and Middle Eastern descent) are walking around with the trait? The genetic illness that in spite of affecting so many people, there is still no cure for? Yeah. That one.

Well, according to the piece in Mother Jones, entitled “One Disease Hits Mostly People of Color. One Mostly Whites. Which One Gets Billions In Funding?“, race plays a huge part in why we don’t talk about the disease as much as we should. As the article states:

Consider, for comparison, the experience of people with another life-shortening genetic illness, cystic fibrosis, a respiratory and digestive condition. Like sickle cell, it gets worse with age, requires strict daily drug regimens, and often results in hospitalization. And like sickle cell, it dramatically shortens patients’ life spans—to a median of 37 years for cystic fibrosis, compared to 40 to 45 years for sickle-cell disease.

But here’s one key difference: Cystic fibrosis affects mostly Caucasians. And that, suspects John Strouse, a Johns Hopkins hematologist who has compared data about the two diseases, is one reason why funding for cystic fibrosis research, drug development, and patient advocacy dwarfs that for sickle-cell disease. In 2011, the most recent year for which his data is available, spending on cystic fibrosis totaled $254 million—nearly four times the $66 million that was spent on sickle cell, even though the latter affects three times as many people.

This disparity in research funding is likely no surprise to anyone with a kernel of common sense. In short, Black folks are a marginalized people. Unfortunately, the medical research community is no exception when it comes to playing a part in our marginalization. However, as the article notes, it is not just a matter of how much money is being donated, although that is an issue too, but the demographics of those who are likely to support cystic fibrosis charities versus those who support sickle cell. Basically, cystic fibrosis attracts wealthier and more influential donors who are in better positions to influence change.

The affluent membership of cystic fibrosis charities has been able to gain the capital needed to invest in a pharmaceutical company for this disease. This company not only discovered a breakthrough treatment for the rare disorder, but found a way to sell the rights to this medical discovery, which made these charities filthy rich.

Meanwhile, sickle cell has T-Boz…

And this is not to sh*t on T-Boz and the work she does to bring awareness, and actual money, to the Sickle Cell Foundation Support Group. But we do have to wonder why A-list Black celebrities, in general, will appear buck naked in print ads to promote the interests of PETA, an animal rights organization with a horrible track record of both sexism and racism, but sickle cell anemia can’t get a celebrity endorsement from any other star who has been culturally relevant in the last decade or so.

Likewise, it is particularly tragic that only a few months ago, the masses of us were having fun dumping buckets of ice water over our heads. We donated actual money to a disease that even Lucious Lyons couldn’t get, yet we are pretty lackadaisical with our support of sickle cell charities. At some point, we have to realize that ain’t nobody gonna save us out here but us…

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