, 10 tweets, 2 min read Read on Twitter
This one is going to get lost in the news cycle, and that saddens me. It's also somewhat ironic.

Sickle Cell Disease Still Tends to Be Overlooked nyti.ms/2yQbgHj
Sickle cell disease is a huge problem for those who have it. About 100,000 Americans do, and most of them are African-American. It's been ignored and marginalized for decades.
The cell malformations were identified more than a century ago. The inheritance patterns were published 70 ago. The first treatment, hydroxyurea, was approved only in 1998. It was the only treatment available for almost 20 years. A second drug, Endari, was approved two years ago.
A 1994 study found that the median age of death for a woman born with sickle cell disease in the United States was 48 years; for a man it was 42. A more recent study found that in 2005, the median age of death was 42 for women and 38 for men.
Prophylactic antibiotics reduce the chance of infections and sepsis. Screening kids each year with an ultrasound of the head can help prevent strokes.

Less than 20% of kids get the antibiotics. Less than half get the ultrasounds.
Last fall, though, CMS decided not to add quality measures for antibiotics and doppler ultrasounds to the core set. So we're not even measuring our failure, let alone correcting it.
And let's be honest - diseases that affect different populations, like cytstic fibrosis get much more attention.

A 2013 study found that CF gets 11x the NIH funding per affected person, 440x the foundation funding, and twice the number of publications.
Many have covered how stereotyping those affected with SCD leads to undertreatment for pain crises and poor treatment in general.

We ignore, we ignore, we ignore.
I hoped, with my inflated ego, that writing about this would help. But, once again, the news overwhelms. There's so much acutely wrong in the world that the chronic issues can be placed on the permanent back burner.

This one shouldn't. We have to stop ignoring this.
It’s almost impossible to improve quality without being able to measure it. When it comes to sickle cell disease, we're failing to do both.

I don't care if the article underperforms. I do care that, once again, we may fail to take action. nytimes.com/2019/08/05/ups…
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