The number of men living with haemophilia globally is nearly three times higher than previously thought, new research reveals.
Using national registry data an international team of researchers calculated that there were more than 1,125,000 men around the world with the disorder compared with previous estimates of 400,000 people.
The study published in the Annals of Internal Medicine also estimated that the life expectancy of people with haemophilia was 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.
Lead author Alfonso Iorio, professor of health research methods, evidence, and impact at McMaster University, Canada, described the research as a milestone in the journey towards providing care for haemophilia patients worldwide.
“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,” he said.
A related editorial published in the journal said the magnitude of the global gaps in care for people with haemophilia was daunting.