The World Federation of Hemophilia (WFH) recently announced the publication of a new study on the global prevalence of hemophilia, the results of which suggest a number that is significantly higher than the previous estimates. Findings from this eye-opening study were published in the Annals of Internal Medicine.
WFH recognized that having a clearer understanding of hemophilia prevalence will only enhance efforts to improve health care and quality of life for patients worldwide. They therefore put out a call to action that ultimately inspired researchers from McMaster University, North Carolina State University, Aix-Marseille University, and the University of Sheffield to conduct a meta-analysis of registry data in countries with comprehensive patient registries. These included Australia, Canada, France, Italy, New Zealand, and the United Kingdom. Investigators, working in concert with WFH’s Data and Demographics Committee (DDC), uncovered a prevalence, per 100,000 males, of 17 for all severities of hemophilia A, 6 for severe hemophilia A, 4 for all severities of hemophilia B, and 1 for severe hemophilia B.
The study was unprecedented for also estimating hemophilia prevalence at birth, which is defined as the number of people born with hemophilia per 100,000 male births. Investigators’ analysis established that prevalence at birth per 100,000 males is 25 for all severities of hemophilia A, 10 for severe hemophilia A, five for all severities of hemophilia B and two for severe hemophilia B. The study generated an overall global estimate of approximately 1,125,000 males with hemophilia, representing a dramatic increase when compared to the previous estimate of 400,000 worldwide. Further, 418,000 of these are estimated to have severe hemophilia, the majority of whom are undiagnosed.
“This paper is a milestone in our journey to providing care to hemophilia 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 are reported to national and international registries is a measure of the work left to be done,” said Alfonso Iorio, MD, lead author and past-chair of the DDC. “Knowing how many patients are out there will enable health care systems to estimate the resources needed to treat the disease, and will enable drug manufacturers to increase the investment in research to match the demand of a patient population three times larger than previously thought. It will also serve to underline the importance of outreach and identification campaigns.”
The article, “Establishing the Male Prevalence and Prevalence at Birth of Hemophilia: A Meta-Analytic Approach Using National Registries, appeared September 10, 2019 in Annals of Internal Medicine.
Source: WFH press release dated September 10, 2019
