Did you know that sickle cell anemia is the single most common life-threatening genetic disease in the United States? I sure didn't.
Over 100,000 Americans suffer from sickle cell disease and it is a torturous, painful life to live. Yet, the funding and publicity of sickle cell disease lags drastically far behind that of virtually every other genetic illness.
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 guess who primarily suffers from sickle cell disease? African Americans. The funding disparity between the two is drastic.
In part, that's because cystic fibrosis' primary dedicated charity—the Cystic Fibrosis Foundation—is far wealthier than the dozens of sickle-cell organizations combined. In 2011, the foundation spent $176 million on cystic fibrosis—compared to the $1.1 million spent by the Sickle Cell Disease Association of America, the largest of the advocacy groups.
Yet the disparity isn't limited to these private funds. The National Institutes of Health spends nearly four times as much per patient on cystic fibrosis research as it does on sickle cell. From 2009 to 2011, researchers published twice as many papers on cystic fibrosis as they did on sickle cell
In spite of the reality that four times the number of people suffer from sickle cell disease as those with cystic fibrosis, it's clear that one genetic illness is advocated for far more than the other. While saying that racism is the lone cause of this disparity is an oversimplification of the problem, it's certainly the foundation of it. While we should celebrate the success that cystic fibrosis charities are having, it is the responsibility of our government and of academia to not have such a wide gap in the causes they advocate and research for.