The Deceptive Game of Numbers

ČSH

The World Federation of Hemophilia has just published freshly compiled statistics on the diagnosis and treatment of haemophilia worldwide in 2011. Data collection and processing is so complex that results regularly appear only at the beginning of the following year. The data comes from individual countries that report information about their systems.

This time, the figures cover a total of 108 countries, representing 90.6% of the world's population. A total of 167,110 people with haemophilia, 69,729 with von Willebrand disease, and 31,191 suffering from other bleeding disorders are registered. The statistics therefore concern a total of 268,030 people. Of these, 164,154 have haemophilia A and 26,821 have haemophilia B. Among them, 3,387 haemophilia A patients have an inhibitor, while 183 are reported among haemophilia B patients.

The average consumption of Factor VIII across 68 qualifying countries is 2.20 IU per capita. For Factor IX, it is 0.36 IU. Consumption is also reported in relation to the GDP of individual countries according to World Bank data, and the gap between the poorest and richest countries is eightyfold. There are countries such as Ivory Coast, Ghana, Nigeria, or Uganda that report zero factor consumption or a negligible 0.01 IU per capita, all the way up to 7.23 in Australia, 8.09 in Ireland, or 7.30 in the United Kingdom. The Czech Republic features in the statistics among very developed countries with a consumption of 4.0 IU per capita. The question is how relevant the data is, because for example Russia reports consumption of 4.7 and should therefore be far better off than us, whereas we well know the opposite is true. It is unfortunate that in our country there is no overview of people with other coagulation disorders, so in the WFH tables the Czech Republic appears under "not known" alongside Albania, Argentina, Belize, Eritrea, Ghana, Indonesia, Kuwait, the Baltic States, Sri Lanka, Uganda, Ukraine, and Zimbabwe.

The source further provides a breakdown of haemophilia patients and vWD patients by age group, as well as people who are HIV positive through haemophilia treatment (5 in our country) or have hepatitis C (132 in our country).

In total, 12,140,000 units of Factor VIII were consumed in our country, of which only 4,214,000 in the form of recombinants. Worldwide, reported consumption amounts to 4,383,364,827 units of Factor VIII, of which 1,773,764,375 are recombinants. For Factor IX, the figure in our country is 5,733,000 units, with no recombinants, while worldwide it is 641,739,140, of which 236,181,126 are recombinants.

Numbers of course cannot tell the whole story about care in individual countries, and one can even successfully question whether the volume of consumption is truly the sole measure of quality.

Our country does not feature at the top of countries with high consumption, yet nobody suffers from a shortage. This can be explained by the fact that in the truly leading countries, prophylaxis is used much more extensively.

If anyone would like to study the statistics in more detail, they can contact the Society's Board, which will send them all tables and graphs.