These Sisters With Sickle Cell Had Devastating, and Preventable, Strokes

[WhiskeyGrinder]

https://www.nytimes.com/2021/05/23/health/sickle-cell-black-children.html

Kyra, who has sickle cell, had suffered a devastating stroke — her second — a common complication of this inherited disease, which afflicts 100,000 Americans, most of them Black. She most likely would never have had the strokes if she had been given an annual screening test and treatment proven more than two decades earlier to prevent nine out of 10 strokes in children with the disease and recommended by the National Institutes of Health. But like countless other children with sickle cell, she was never screened.

This is a paradoxical moment for people who have this painful, deadly disease. For the first time, gene therapies that have advanced through clinical trials offer the real possibility of a cure.

But Dr. Francis Collins, director of the National Institutes of Health, said the lack of attention paid to sickle cell historically “is one more reflection of the fact that we do not have equity in our country.”

(snip)
A third as many Americans have cystic fibrosis, a genetic disease that is of comparable seriousness to sickle cell but that primarily affects white children, yet it gets “seven to 11 times the research funding per patient, which results in disparate rates of development of medications,” according to a recent opinion piece in The New England Journal of Medicine. Only four medications are approved by federal regulators for sickle call, and 15 for cystic fibrosis.

[area51]

1. Unless this country decides that healthcare is a basic right,

this is going to continue to happen.