Roger Ailes, the late, disgraced former chairman and CEO of Fox News — whose downfall was chronicled in the recent HBO mini-series “The Loudest Voice” and is the subject of a forthcoming movie called “Bombshell” — suffered from hemophilia. This is a condition in which blood lacks enough clotting proteins to staunch its flow. Ailes died in 2017 after a fall, from internal bleeding made worse by the condition.
Hemophilia is a rare genetic disorder. But it’s not as rare as it had long been considered to be.
It was previously thought that the condition affected only about 400,000 people around the globe. According to a study of hemophilia published today in Annals of Internal Medicine, in fact more than 1,125,000 men worldwide have inherited the condition — three times the previously accepted number — and some 418,000 of those have a severe case. (For genetic reasons, while women can carry the disease and pass it along to their offspring, they are almost never affected by it.)
A collaboration between scientists from Canada, the U.S., France, and the U.K., led by researchers from McMaster University in Hamilton, Ontario, the study was also the first to calculate the prevalence of hemophilia at birth. With this information they were able to establish that those with the condition have a significantly shorter life expectancy than non-sufferers, especially in lower-income countries, where treatment may be lacking.
Hemophilia is treated with infusions of the missing clotting factor to prevent or forstall serious bleeding — but the procedure is expensive, and not available in many places. This summer, a hemophilia treatment manufactured by Bayer was recalled by the FDA for mislabeling.
The study calculated that the chances of a hemophiliac living a normal life, in both quality and duration, are reduced by 64% in upper-middle-income countries, 77% in middle-income nations, and up to 93% in countries with low incomes. Even in the U.S., where a number of different issues may affect it, longevity varies greatly by neighborhood. These are the cities with the largest gaps in life expectancy.
“Establishing prevalence [of hemophilia] at birth,” wrote the authors of the report in their conclusion, “is a milestone toward assessing years of life lost, years of life with disability, and burden of disease.”
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