18 September 2019

A new Canadian study has estimated the number of men living with haemophilia globally to be nearly three times higher than previously thought.

Researchers at McMaster University, Ontario, have calculated that there are more than 1,125,000 men around the world with the disorder. Of these, 418,000 have a severe version of the disease.

This compares with previous estimates that have claimed 400,000 people globally have the disorder.

Writing in the Annals of Internal Medicine, the international research team also for the first time calculated the prevalence of haemophilia among babies at birth. This enabled them to estimate that the life expectancy of haemophiliacs is significantly less than other people, particularly in lower-income countries.

They found that, per 100,000 males, 21 will have haemophilia A or B, seven of whom will have a severe form of the disease. Among newborns, per 100,000 males, 29 will have haemophilia A or B, of whom 12 will have the severe form.

For those born with haemophilia, the chances of living a life of normal duration and quality will be reduced by 64% in upper-middle income countries, 77% in middle income and up to 93% in low income countries.

Prof Alfonso Iorio, lead author of the paper, professor of health research methods, evidence, and impact at McMaster University, said: “This paper is a milestone in our journey to providing care for haemophilia patients worldwide.

“Knowing how many patients are expected in each country given its population is an important measure of the efficiency of the health care system. Knowing how many patients should be there, and how many less instead are reported to national and international registries is a measure of the work left to be done.

“Knowing how many patients are out there will enable health care systems to estimate the resources needed to treat the disease, and enable drug manufacturers to increase the investment in research to match the demand of a patient population three times larger than we previously thought.”

Source: Iorio, A., Stonebraker, J.S., Chambost, H., Makris, M., Coffin, D., Herr, C., Germini, F.; for the Data and Demographics Committee of the World Federation of Hemophilia (2019) “Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries” Annals of Internal Medicine, available from doi: 10.7326/M19-1208


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