december 2011
World Federation of Hemophilia
Report on the
ANNUAL GLOBAL SURVEY
2010
Report on the Annual Global Survey 2010 is published by the World Federation of Hemophilia.
All data are provisional.
© World Federation of Hemophilia, 2011
To obtain permission to reprint, redistribute, or translate this publication, please contact the
Communications Department at the address below.
When this data is used in publications or other research the World Federation of Hemophilia
must be credited. We encourage researchers to contact us in the event they use the Global Survey
data.
Please note: This material is intended for general information only. The World Federation of
Hemophilia does not endorse particular treatment products or manufacturers; any reference to a
product name is not an endorsement by the World Federation of Hemophilia. The WFH is not a
regulatory agency and cannot make recommendations relating to safety of manufacturing of
specific blood products. For recommendations of a particular product, the regulatory authority in
a particular country must make these judgments based on domestic legislation, national health
policies and clinical best-practices.
World Federation of Hemophilia
1425 René Lévesque Boulevard West, Suite 1010
Montreal, Quebec H3G 1T7
Tel. (514) 875-7944
Fax: (514) 875-8916
E-mail: [email protected]
Website: www.wfh.org
Table of contents
Introduction……………………………………….……………
1
Summary of survey data………………………………….….
3
Graphs – number of identified patients……………………..
4
Graphs – factor usage……..………………..…………..……
6
Countries included in the survey…………………………….
11
Population statistics …………………………………..….…..
12
Distribution of reported bleeding disorders by country .…..
15
Gender distribution ………………………………………...…
18
Patients with inhibitors ………………………………………
19
Age distribution Hemophilia and VWD………………..……
21
HIV and HCV infection ………………………………………
27
Healthcare system……………………………………………
29
Reported use of factor concentrates…………………….…
32
Annual Global Survey 2010 sample questionnaire………..
36
Glossary………………………………………………………
44
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Introduction to the Report on the WFH Global Survey 2010
Report on the Annual Global Survey 2010 includes selected demographic and other data on people with
hemophilia (PWH), von Willebrand disease (VWD), other rare factor deficiencies, and inherited platelet
disorders throughout the world. The purpose of this report is to provide useful information to
hemophilia organizations, hemophilia treatment centres (HTCs), and health officials involved in efforts to
reduce or prevent complications of bleeding disorders in order to assist with program planning.
Methodology
In 1998, the World Federation of Hemophilia (WFH) began collecting information on hemophilia care
throughout the world. This survey, called the WFH Global Survey, collects basic demographic
information, data on resources of care and treatment products, and information on the prevalence (the
percentage of the population affected) of infectious complications such as HIV and hepatitis C (HCV).
The WFH compiled the first survey report in 1999.
Each year questionnaires are sent to national hemophilia associations linked with the WFH with the
request that they in turn work with physicians or health officials, as necessary, to complete the survey.
The WFH reviews completed questionnaires for inconsistencies, which are clarified where possible by
communicating directly with the participating organization. The 2010 survey is the twelfth WFH survey.
This report uses data for the years 2006, 2007, 2008, 2009 and 2010. Not all of our members are able to
report every year. A list of participating countries and their data year can be found on page 11. The
survey includes data on more than 250,000 people with hemophilia, von Willebrand disease and other
bleeding disorders in 106 countries. Data from the WFH questionnaire are supplemented with data from
other sources in order to provide a general socio-economic picture of each country surveyed. The survey
questionnaire is included at the end of this report.
Comments on the graphs
The graph showing the increase over time in patients identified contains data from the history of the
Global Survey. This graph was created using aggregated numbers to demonstrate the increases in
patients identified over time. If a country reported data one year and not the next, the older data were
used on the assumption that the number of patients did not change substantially from one year to the
next. For all the graphs, answers were not always available for all questions. In such cases, the analysis
was done using only data from countries that responded, with the number of respondents as the
denominator.
Comments on data collection
Participation in the survey is voluntary. Although these data are self-reported, fairly consistent
information on hemophilia care has been obtained from countries with similar economic capacities,
validating its use for program planning. Countries that are part of the WFH’s Global Alliance for Progress
(GAP) program (Azerbaijan, Belarus, Ecuador, Jordan, Lebanon, Mexico, Russia, Thailand, Tunisia,
China, and Syria) report more frequently than once per year, in cases where a 2010 survey form was not
completed other WFH data was used. Some countries are only able to provide detailed data on gender,
age, inhibitors and HIV/HCV infection for a limited subset of patients, for example they may know the
total number of people with hemophilia in the country but have age and gender data from just one
treatment centre. This report provides information on the annual usage of treatment products for 2010
only. It includes only those countries where the national hemophilia organization provided information.
Quantities reported used were not independently verified except when the WFH has data on
humanitarian donations in 2010. The amounts reported may only be factor bought through government
or other sources. Not all national hemophilia organizations are able to report on all product used in their
country.
1
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Please consider the following caveats about the data in this report.
a) Founder effects can create pockets of patients concentrated geographically. The founder effect occurs
when a small population grows in isolation and there is little genetic dilution. This can increase the local
frequency of genetic disease compared to the general population. This may occur with hemophilia and all
the rare bleeding disorders. In the extremely rare bleeding disorders, consanguinity may lead to an
increased incidence in some countries.
b) Countries with small populations can appear to have too many identified patients. Countries
submitting data to the WFH range in population from 300,000 to over a billion. With a small denominator
(total population), just a few extra identified patients (the numerator) can create the appearance of huge
percentage differences between expected and identified patients when really there are only a few more
patients than expected.
c) The type of health care system in a country can influence data quality. A country with universal health
care may be more likely to identify patients with hemophilia even if they don't require treatment. In
countries with different health care systems, it is likely that patients that do not require treatment will not
be identified.
d) Definitions may vary from country to country. Countries may use different definitions to diagnose
mild hemophilia and other disorders. In the case of the rare bleeding disorders, some countries may
report heterozygous patients while other countries report only patients with bleeding symptoms.
e) Some countries are reporting every patient that seeks treatment while other countries are using
methods to identify patients who do not require treatment, such as laboratory screening or follow up
with families of identified patients.
f) Data gathering and the state of registries varies. Maintaining accurate registries is time consuming and
expensive. It is possible that some registries contain patients who have been double-entered or have died.
Even wealthy countries with excellent registries have to carefully review their records to avoid overcounting. Countries with big populations are more susceptible to over-counting. It is harder to keep track
of births and deaths, some patients may be registered in more than one treatment centre, validation of
registry data is more difficult.
g) There is also the possibility that the death rate due to HIV and hepatitis C infection is not the same
around the world. In some countries there may have been lower infection rates, while other countries
may have had better treatment for infected people with hemophilia.
h) The numbers in this report are as reported by our members for their countries. They are not
independently verified by the WFH. Some countries are not reporting for the whole country, they only
have data from certain treatment centres or large cities.
WFH Global Survey 2010
2
World Federation of Hemophilia Global Survey 2010
2010 WFH Global Survey summary
Demographics
Number of countries in this survey
Percentage of world population covered by countries in 2010 survey report
106
93.5%
Number of people identified with hemophilia A and B
Number of people identified with VWD
Number of people identified with other bleeding disorders
162,781
65,100
29,301
Total number of people with bleeding disorders identified
257,182
Number of people with hemophilia A
Number of people with hemophilia B
125,049
25,160
Number of hemophilia A patients with clinically identified inhibitors
Number of hemophilia B patients with clinically identified inhibitors
4554
304
Factor usage
Mean global per capita factor VIII usage
Median global per capita factor VIII usage
1.42 IU
0.86 IU
61 countries reporting
61 countries reporting
Mean global per capita factor IX usage
Median global per capita factor IX usage
0.24 IU
0.18 IU
52 countries reporting
52 countries reporting
6,013,837,683 IU
61 countries reporting
867,946,860 IU
52 countries reporting
Total reported annual global consumption of factor VIII
concentrates
Total reported annual global consumption of factor IX
concentrates
(Please note that the group of countries reporting factor usage changes from year to year. The average per
capita and total consumption figures reported this year cannot be directly compared to other survey
years.)
3
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
A. Identified patients – all disorders (Collection of data on other bleeding disorders began in 2004. The
other disorders can be seen on graph C.)
300,000 250,000 200,000 150,000 100,000 50,000 0 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 Other bleeding disorders von Willebrand disease Hemophilia A & B B. The graph below shows the proportion of male and female patients for the all bleeding disorders.
(See gender data on page 18.) These data are from the countries that provided gender distributions for
2010 or 2009 (81 reported for hemophilia, 71 reported for VWD and 61 reported for rare bleeding
disorders).
100% 50% 0% Gender not known WFH Global Survey 2010
Female 4
Male World Federation of Hemophilia Global Survey 2010
C. Distribution of other bleeding disorders
Bernard Soulier 2% FI 7% Glanzmann's 10% FII 1% FV 7% FXIII 6% FXI 28% FV+VIII 2% FVII 30% FX 7% Many countries report significant numbers of patients with other platelet disorders
but these have not been included in this graph. For the complete numbers, see the
table starting on page 15.
5
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
D. Mean global factor use based on World Bank rankings. Categories are based on
the rankings for 2010. (GNI in US dollars: lower middle income, $996 - $3,945; upper
middle income, $3,946 - $12,195; and high income, $12,196 or more.)
100,000
Factor VIII
90,000
IU per patient
IU per capita
80,000
5.0
4.0
60,000
3.0
50,000
40,000
2.0
IU per capita
IU per patient
70,000
30,000
20,000
1.0
10,000
0
upper income
upper middle income
lower middle income
Economic level
90,000
0.9
0.8
80,000
Factor IX
70,000
0.6
50,000
0.5
40,000
0.4
30,000
0.3
20,000
0.2
10,000
0.1
upper income
upper middle income
Economic level
WFH Global Survey 2010
6
lower middle income
IU per capita
60,000
IU per patient
0.7
IU per patient
IU per capita
World Federation of Hemophilia Global Survey 2010
E. Mean per capita factor use in 2010 – regional comparisons of IU/total population.
0.26 Venezuela 0.10 0.60 0.01 0.44 Ecuador 0.56 Dominican Republic 0.00 0.18 Cuba 0.01 0.19 FIX FVIII 0.85 Costa Rica 0.27 Colombia 1.53 1.38 1.29 Canada 0.24 Brazil Bolivia 5.16 0.15 0.55 Peru Honduras Americas 0.81 United States Mexico 1.51 5.30 1.15 0.01 0.03 Argentina 0.00 0.36 1.00 2.44 2.00 3.00 4.00 5.00 6.00 PLEASE NOTE: The X axis showing the number of IU/capita is different in each graph. The red line indicates 1 IU per
capita of factor VIII. The WFH has established that one international unit (IU) of FVIII clotting factor concentrate per
capita should be the target minimum for countries wishing to achieve optimal survival for the hemophilia population. In
regions where the per capita level is lower than 1, there is no red line. Higher levels would be required to preserve
joint function or achieve a quality of life equivalent to an individual without hemophilia. Please note the red line does
not apply to factor IX.
7
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Mean per capita factor use in 2010 – regional comparisons of IU/total population.
Africa 0.006 0.042 Sudan 0.098 South Africa Nigeria 0.002 Kenya 0.006 Cameroon 0.001 0.002 0.832 FIX FVIII 0.000 0.100 0.200 0.300 0.400 0.500 0.600 0.700 0.800 0.900 Tunisia 0.40 Syria Eastern Mediterranean 0.32 0.07 Saudi Arabia Palestine 0.05 Pakistan 0.001 0.004 1.56 0.72 FIX Oman 0.40 Lebanon FVIII 0.49 Jordan Iraq Iran 0.00 0.89 0.17 0.67 0.19 0.20 1.56 0.40 0.60 0.80 1.00 1.20 1.40 1.60 PLEASE NOTE: The X axis showing the number of IU/capita is different in each graph. The red line indicates 1 IU per
capita of factor VIII. The WFH has established that one international unit (IU) of FVIII clotting factor concentrate per
capita should be the target minimum for countries wishing to achieve optimal survival for the hemophilia population.
Higher levels would be required to preserve joint function or achieve a quality of life equivalent to an individual without
hemophilia. Please note the red line does not apply to factor IX.
WFH Global Survey 2010
8
World Federation of Hemophilia Global Survey 2010
Mean per capita factor use in 2010 – regional comparisons of IU/total population.
Uzbekistan Europe 0.02 1.32 United Kingdom 0.28 Turkey 1.47 0.72 Switzerland 4.13 0.26 Slovenia 5.97 0.51 Slovak Republic Serbia 7.51 5.06 0.12 1.37 Russia 0.50 Romania 0.51 4.25 0.63 Portugal 3.91 Poland 4.72 Moldova 0.02 0.40 Macedonia 0.46 FIX 0.22 Latvia 1.30 2.05 Ireland 7.24 1.01 Germany 0.13 6.90 0.74 0.97 France Czech Republic 7.12 0.27 Hungary Georgia FVIII 1.72 6.13 0.00 3.71 Belgium 5.47 Belarus 2.00 0.13 Azerbaijan Albania 1.75 0.10 0.40 0.00 1.00 2.00 3.00 4.00 5.00 9
6.00 7.00 8.00 WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Mean per capita factor use in 2010 – regional comparisons of IU/total population.
South-­‐East Asia 0.08 Thailand Sri Lanka 0.22 Indonesia FIX 0.04 Bangladesh 0.0003 0.005 India 0.0009 0.004 0.000 FVIII 0.050 Viet Nam Philippines Malaysia Korea, Republic of 0.150 0.200 0.250 Western Paci8ic 0.05 0.003 0.03 2.433 New Zealand Mongolia 0.100 9.73 0.014 0.08 FIX 0.304 0.52 FVIII 0.539 Japan Australia 2.85 2.91 1.19 6.96 0.00 1.00 2.00 3.00 4.00 5.00 6.00 7.00 8.00 9.00 10.00 PLEASE NOTE: The X axis showing the number of IU/capita is different in each graph. The red line indicates 1 IU per
capita of factor VIII. The WFH has established that one international unit (IU) of FVIII clotting factor concentrate per
capita should be the target minimum for countries wishing to achieve optimal survival for the hemophilia population. In
regions where the per capita level is lower than 1, there is no red line. Higher levels would be required to preserve
joint function or achieve a quality of life equivalent to an individual without hemophilia. Please note the red line does
not apply to factor IX.
WFH Global Survey 2010
10
World Federation of Hemophilia Global Survey 2010
Countries included in the 2010 WFH Global Survey Report
(Please note: the year indicates the year the submitted data applies to. Not all of our members are able to
submit data every year. For the 2010 survey report, 75 countries submitted data for 2010. The data used
from other years is as follows. 2009: 18 countries, 2008: 5 countries, 2007: 5 countries, 2006: 3 countries.)
Albania
Algeria
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahrain
Bangladesh
Belarus
Belgium
Belize
Bolivia
Bosnia-Herzegovina
Brazil
Bulgaria
Cambodia
Cameroon
Canada
Chile
China
Colombia
Costa Rica
Cote d'Ivoire
Croatia
Cuba
Czech Republic
Denmark
Dominican Republic
Ecuador
Egypt
Eritrea
Ethiopia
Finland
France
Georgia
2010
2010
2010
2009
2010
2009
2010
2007
2010
2009*
2010
2009
2010
2006
2010
2009
2010
2010
2010
2009
2010
2010
2010
2010
2007
2010
2010
2010
2010
2009*
2009
2010
2010
2010
2010
2010
Germany
Greece
Guatemala
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Israel
Italy
Japan
Jordan
Kazakhstan
Kenya
Korea, Republic of
Kyrgyzstan
Latvia
Lebanon
Lesotho
Lithuania
Macedonia
Malaysia
Mexico
Moldova
Mongolia
Nepal
Netherlands
New Zealand
Nicaragua
Nigeria
Norway
Oman
Pakistan
2010
2009
2010
2010
2010
2007
2010
2010
2010
2010
2010
2010
2007
2010
2010
2008
2010
2010
2010
2010
2008*
2009
2009
2010
2010
2010
2010
2010
2010
2009
2010
2009
2010
2008
2010
2010
Palestine
Panama
Paraguay
Peru
Philippines
Poland
Portugal
Qatar
Romania
Russia
Saudi Arabia
Senegal
Serbia
Singapore
Slovak Republic
Slovenia
South Africa
Spain
Sri Lanka
Sudan
Sweden
Switzerland
Syria
Thailand
Tunisia
Turkey
Ukraine
United Kingdom
United States
Uruguay
Uzbekistan
Venezuela
Viet Nam
Zimbabwe
2010
2009
2009
2010
2010
2010
2010
2006
2010
2010
2010
2010
2010
2006
2010
2010
2010
2010
2010
2010
2009
2010
2009*
2010
2008*
2010
2007
2010
2010
2009
2010
2010
2010
2008
* For countries that did not complete a 2010 survey form but are part of the WFH GAP program,
WFH data on the total number of patients identified and factor use in 2010 was used. All other
data are from the year indicated.
11
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Population statistics
(NOTE: In all of the population charts a 0 indicates that the member organization reported the number zero,
a blank space indicates that no number was reported.)
Population
People with
hemophilia
Albania
2,986,952
250
Algeria
34,586,184
Argentina
41,343,201
2,264
355
Armenia
2,966,802
208
10
10
Australia
21,515,754
2,390
1,748
542
Austria
8,214,160
509
Azerbaijan
8,303,512
885
738,004
20
Country
Bahrain
Bangladesh
People with von
Willebrand disease
People with other
bleeding disorders
138
4
156,118,464
503
0
8
Belarus
9,612,632
745
171
45
Belgium
10,423,493
988
1,338
133
314,522
14
Belize
Bolivia
9,947,418
Bosnia-Herzegovina
4,621,598
140
30
201,103,330
10,065
4,480
1,649
7,148,785
589
79
38
Cambodia
14,453,680
65
1
2
Cameroon
19,294,149
96
1
0
Canada
33,759,742
3,380
3,563
1,460
Chile
16,746,491
1,252
1,330,141,295
8,590
44
181
Colombia
44,205,293
1,915
208
138
Costa Rica
4,516,220
194
58
22
21,058,798
55
2
7
Brazil
Bulgaria
China
Cote d'Ivoire
Croatia
4,486,881
477
282
139
Cuba
11,477,459
403
110
1,800
Czech Republic
10,201,707
833
Denmark
5,515,575
481
391
87
Dominican Republic
9,823,821
249
71
121
Ecuador
14,790,608
251
35
13
Egypt
80,471,869
5,307
455
986
Eritrea
5,792,984
56
1
Ethiopia
88,013,491
44
17
Finland
5,255,068
428
3,004
33
France
64,768,389
5,478
1,186
346
WFH Global Survey 2010
12
World Federation of Hemophilia Global Survey 2010
Country
Georgia
Population
People with
hemophilia
People with von
Willebrand disease
People with other
bleeding disorders
4,600,825
256
22
Germany
82,282,988
4,654
4,447
Greece
10,749,943
890
684
215
Guatemala
13,550,440
114
18
2
Honduras
7,989,415
283
11
3
Hungary
9,992,339
999
1,318
375
308,910
64
96
1,173,108,018
13,993
477
422
Iceland
India
Indonesia
10
242,968,342
1,388
Iran
76,923,300
5,069
877
1,977
Iraq
29,671,605
902
182
201
Ireland
4,622,917
730
975
1,316
Israel
7,353,985
540
4
1
Italy
58,090,681
3,270
1,650
700
Japan
126,804,433
5,346
944
502
6,407,085
327
215
216
Kazakhstan
15,460,484
1,360
460
108
Kenya
40,046,566
150
Korea, Republic of
48,636,068
1,867
90
90
Kyrgyzstan
5,508,626
320
10
Latvia
2,217,969
140
101
2
Lebanon
4,125,247
175
63
37
Lesotho
1,919,552
15
1
0
Lithuania
3,545,319
152
149
43
Jordan
Macedonia
2,072,086
315
90
6
28,274,729
1,188
464
346
112,468,855
4,527
191
9
Moldova
4,317,483
243
4
Mongolia
3,086,918
75
4
Nepal
28,951,852
336
1
13
Netherlands
16,783,092
1,397
257
65
New Zealand
4,252,277
416
177
29
4
Malaysia
Mexico
Nicaragua
5,995,928
217
59
152,217,341
135
6
Norway
4,676,305
397
858
37
Oman
2,967,717
97
281
271
184,404,791
1,436
308
270
Nigeria
Pakistan
13
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Country
Population
People with
hemophilia
Palestine
2,514,845
135
10
63
Panama
3,410,676
262
346
16
Paraguay
6,375,830
448
1
1
Peru
29,907,003
743
144
17
Philippines
99,900,177
1,081
29
Poland
38,463,689
2,653
1,202
629
Portugal
10,735,765
632
48
21
840,926
112
7
62
Qatar
Romania
People with von
Willebrand disease
People with other
bleeding disorders
21,959,278
1,662
350
9
139,390,205
5,421
1,254
954
Saudi Arabia
25,731,776
326
75
36
Senegal
12,323,252
136
1
7
Serbia
7,344,847
445
189
18
Singapore
4,701,069
204
58
85
Slovak Republic
5,470,306
561
506
855
Slovenia
2,003,136
203
154
98
South Africa
49,109,107
1,886
579
217
Spain
46,505,963
1,925
702
292
Sri Lanka
21,513,990
664
Sudan
43,939,598
650
156
120
Sweden
9,074,055
1,020
1,538
Switzerland
7,623,438
697
133
70
Syria
22,198,110
465
30
16
Thailand
67,089,500
1,039
69
53
Tunisia
10,589,025
375
76
112
Turkey
77,804,122
3,914
574
596
Ukraine
45,415,596
2,600
United Kingdom
62,348,447
6,573
9,187
7,218
310,232,863
17,485
13,239
1,772
3,510,386
236
316
11
Uzbekistan
27,865,738
1,155
88
33
Venezuela
27,223,228
2,040
707
670
Viet Nam
89,571,130
1,815
57
216
Zimbabwe
11,651,858
311
3
6,176,411,696
162,781
65,100
Russia
United States
Uruguay
Total
WFH Global Survey 2010
14
29,301
World Federation of Hemophilia Global Survey 2010
Distribution of reported bleeding disorders by country
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahrain
Bangladesh
Belarus
Belgium
Belize
Bolivia
BosniaHerzegovina
Brazil
Bulgaria
Cambodia
Cameroon
Canada
Chile
China
Colombia
Costa Rica
Cote d'Ivoire
Croatia
232
18
1,849
184
1,927
257
18
463
853
32
19
437
452
813
1
66
94
175
9
5
100
8,449
10
1,616
30
4,480
531
57
90
2,722
1,068
7,365
1,446
165
58
8
5
658
184
994
303
29
79
1
1
3,563
145
0
Platelet disorders:
Other/Unknown
Bernard Soulier
Glnzmann’s.
Bleeding Dis.:
Type Unknown
FXIII
FXI
FX
FVII
FV+VIII
FV
FII
FI
vWD
Hemophilia type
unknown
Hemophilia B
Country
Albania
Algeria
Hemophilia A
(NOTE: In all of the population charts a 0 indicates that the member organization reported the number zero,
a blank space indicates that no number was reported.)
2
158
356
10
1,748
23
5
15
13
138
6
0
0
171
1,338
3
4
2
48
2
10
1
126
16
8
7
3
3
1
3
14
1
4
26
81
1
4
2
9
19
309
55
98
36
352
118
20
126
6
3
2
83
0
80
10
1
0
53
0
28
9
2
0
553
5
5
20
2
0
1,774
9
11
38
1
140
1
17
23
6
78
7
1
1
0
78
0
11
0
50
0
4
0
246
0
21
0
322
2
1
0
51
44
208
58
2
15
1
9
2
9
2
6
17
8
1
4
13
11
5
1
7
4
37
9
385
92
282
6
0
12
3
48
3
19
7
3
Cuba
Czech
Republic
Denmark
Dominican
Republic
Ecuador
Egypt
Eritrea
334
69
110
1
1
1
1
0
0
11
6
3
719
388
114
93
391
1
1
2
4
8
4
9
216
437
129
49
33
50
37
7
71
79
25
1
1
1
4
5
2
4
22
1
12
3
1
1
4
Ethiopia
Finland
35
332
9
96
2
5
7
4
2
13
58
17
3,004
1
8
15
1
1
7
1
146
1
3
3
2
1
17
90
5
3
20
WFH Global Survey 2010
1
4,491
218
3,957
750
987
38
697
140
Guatemala
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Israel
Italy
108
199
792
63
11,648
334
4,187
676
514
458
2,697
6
19
207
2
2,061
48
882
226
216
92
573
Japan
Jordan
Kazakhstan
Kenya
Korea,
Republic of
Kyrgyzstan
Latvia
Lebanon
Lesotho
Lithuania
Macedonia
Malaysia
Mexico
Moldova
Mongolia
Nepal
4,394
249
1,036
120
952
78
324
13
1,522
209
140
109
15
130
211
1,008
3,582
227
62
298
345
17
25
29
0
22
104
180
576
14
13
40
Netherlands
New Zealand
Nicaragua
Nigeria
1,195
341
191
129
202
75
28
6
Norway
Oman
Pakistan
Palestine
301
90
1,213
107
96
7
216
28
0
10
0
0
284
1,006
0
21
84
0
0
369
0
1
1,186
22
4,447
684
18
11
1,318
96
477
WFH Global Survey 2010
36
16
13
1
1
36
7
107
2
18
6
56
7
14
1
1
206
0
116
46
25
1
10
6
1
13
7
1
15
61
1
1
0
180
12
39
19
45
16
20
6
46
877
182
975
21
1,650
96
34
0
115
1
86
162
1
0
330
53
74
130
11
93
102
1
145
174
16
7
66
388
64
1
0
658
11
3
49
14
73
23
308
54
156
21
45
944
215
460
58
6
4
26
11
7
54
40
15
21
26
36
23
10
90
10
101
62
1
149
90
464
191
4
4
1
6
0
4
8
26
1
13
5
19
0
21
0
0
0
1
0
4
0
1
2
1
0
1
0
3
0
2
0
0
2
0
35
0
4
2
18
2
1
43
5
1
14
1
1
1
40
3
1
13
1
9
281
308
10
0
4
3
5
7
12
52
1
3
177
57
6
Platelet disorders:
Other/Unknown
Bernard Soulier
Glnzmann’s.
Bleeding Dis.:
Type Unknown
FXIII
FXI
FX
FVII
FV+VIII
FV
FII
1
48
0
7
FI
vWD
Hemophilia type
unknown
Hemophilia B
Country
France
Georgia
Germany
Greece
Hemophilia A
World Federation of Hemophilia Global Survey 2010
306
83
239
115
93
1
5
2
3
11
42
1
0
35
1
0
0
0
4
1
5
0
14
0
0
4
1
1
0
2
6
20
2
0
5
5
23
48
24
0
3
24
11
0
17
2
1
29
8
42
24
76
36
2
11
2
151
18
16
1,153
4,209
30
1,032
1,613
1,475
125,049
Uzbekistan
Venezuela
Viet Nam
Zimbabwe
Total
20
3
193
3
6
75
1
189
58
0
2
3
1
1
0
0
15
506
154
579
702
66
7
15
156
Platelet disorders:
Other/Unknown
5,420
13,276
185
0
2
2
Bernard Soulier
115
48
112
38
620
50
48
7
350
1,254
1
1
0
0
51
17
2
46
43
1
10
0
5
1
0
16
33
10
1
2
7
20
1
1
1
1
2
6
5
1
1
9
13
1
0
6
3
6
9
0
5
46
4
3
2
2
5
3
553
11
18
21
18
0
3
48
9
43
12
10
9
36
14
28
24
3
1
7
20
171
9
1
20
0
4
9
0
17
0
133
30
69
76
574
11
5
1
11
0
0
2
2
3
20
4
3
1
5
29
2
12
15
257
4
1
1
1
74
8
14
0
4
7
0
13
40
175
123
1
132
163
2
23
679
730
3
183
89
1
1,918
504
2
59
115
21
9,187
13,239
316
117
436
336
4
88
741
57
43
1
7
66
3
38
1
24
6
3
148
15
91
9
380
4
13
1
25,160
2,323
62,102
1099
210
1189
375
4938
1141
4560
894
15
0
0
29
0
0
1
Glnzmann’s.
582
252
927
162
3,294
0
1
Bleeding Dis.:
Type Unknown
74
21
301
270
137
92
1
FXIII
489
182
1,585
1,655
498
558
0
FXI
66
7
64
28
0
3
1
8
FX
260
129
381
176
Saudi Arabia
Senegal
Serbia
Singapore
Slovak
Republic
Slovenia
South Africa
Spain
Sri Lanka
Sudan
Sweden
Switzerland
Syria
Thailand
Tunisia
Turkey
Ukraine
United
Kingdom
United States
Uruguay
1
FVII
110
25
204
701
FV+VIII
522
87
1,443
4,720
FV
Portugal
Qatar
Romania
Russia
63
42
0
346
1
144
29
1,199
FII
25
14
103
137
389
FI
237
434
577
919
2,216
vWD
Country
Panama
Paraguay
Peru
Philippines
Poland
Hemophilia type
unknown
Hemophilia B
Hemophilia A
World Federation of Hemophilia Global Survey 2010
6
954
0
0
10
48
17
0
66
2
0
1
1
10
3
16
15
6
22
23
52
60
3
0
138
6
186
5
109
58
2
1
1
33
1
10
37
5
15
63
3132
1584
323
WFH Global Survey 2010
1,306
71
71
5377
World Federation of Hemophilia Global Survey 2010
Gender distributions
This table provides the number of males and females with each bleeding disorder for the
countries that have that data.
Disorder
Hemophilia A (81 countries reporting)
Total
patients
identified
96,691
Male
94,095
Female
2494
Gender
not
known
102
Hemophilia B (81 countries reporting)
20,149
19,269
852
28
Hemophilia type unknown (81 countries reporting)
1,011
961
50
0
50,274
19,727
30,382
165
Factor I Deficiency (62 countries reporting)
913
401
512
0
Factor II Deficiency (62 countries reporting)
116
59
57
0
Factor V Deficiency (62 countries reporting)
1000
478
522
0
273
158
114
1
Factor VII Deficiency (62 countries reporting)
Factor X Deficiency (62 countries reporting)
4,116
937
2,058
478
2,049
449
9
10
Factor XI Deficiency (62 countries reporting)
3,838
1,740
2,082
16
771
436
325
10
Bleeding Disorder: Type Unknown (62)
2,097
863
900
291
Platelet disorders: Glanzmanns thrombasthenia (62)
Platelet disorders: Bernard Soulier Syndrome (62)
Platelet disorders: other or unknown (62)
1,245
254
5,318
568
125
2,000
647
118
3,062
30
11
256
Von Willebrand Disorder (64 countries reporting)
Factor V+VIII Deficiency (62 countries reporting)
Factor XIII Deficiency (62 countries reporting)
WFH Global Survey 2010
18
World Federation of Hemophilia Global Survey 2010
Patients with current clinically significant inhibitors (Patients who do not respond to standard treatment.)
Hemophilia A
Hemophilia B
w/ clinically
w/ clinically
Hemophilia
identified
Hemophilia
identified
Country
A
inhibitors
%
B
inhibitors
Argentina
%
1,849
281
15
257
8
3
Armenia
184
7
4
18
1
6
Australia
1,927
137
7
463
6
1
15
NA
1
NA
853
12
1
32
8,449
642
8
1,616
30
2
531
16
3
58
1
2
90
5
6
5
0
0
Canada
2,722
80
3
658
5
1
Chile
1,068
31
3
184
1
1
China
7,365
24
0
994
1
0
Colombia
1,446
54
4
303
6
2
165
17
10
29
0
0
Austria
Azerbaijan
Brazil
Bulgaria
Cameroon
Costa Rica
Cote d'Ivoire
0
10
NA
1
NA
Cuba
334
61
18
69
0
0
Czech Republic
719
16
2
114
1
1
Denmark
Dominican
Republic
388
9
2
93
1
1
216
1
0
33
Finland
332
43
13
96
1
1
4,491
107
2
987
4
0
218
1
0
38
3,957
68
2
697
12
2
Greece
750
20
3
140
2
1
Guatemala
108
2
2
6
0
Honduras
199
1
1
19
0
Hungary
792
36
5
207
1
0
63
0
0
2
0
0
334
65
19
48
Iran
4,187
223
5
882
6
1
Iraq
676
14
2
226
1
0
Ireland
514
10
2
216
1
0
Italy
2,697
288
11
573
8
1
Japan
4,394
78
2
952
16
2
249
18
7
78
1
1
1,036
5
0
324
2
1
140
2
1
25
2
8
France
Georgia
Germany
Iceland
Indonesia
Jordan
Kazakhstan
Latvia
19
0
0
0
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Country
Hemophilia
A
Hemophilia A
w/ clinically
identified
inhibitors
Hemophilia
B
%
Hemophilia B
w/ clinically
identified
inhibitors
%
Lebanon
109
3
3
29
0
0
Lesotho
15
0
0
0
0
NA
Lithuania
130
8
6
22
0
0
Macedonia
211
2
1
104
1
1
Malaysia
1,008
87
9
180
2
1
Mexico
3,582
169
5
576
10
2
New Zealand
341
13
4
75
0
0
Nicaragua
191
1
1
28
Norway
301
12
4
96
0
0
90
12
13
7
0
0
Pakistan
1,213
50
4
216
4
2
Panama
237
12
5
25
0
0
Peru
577
7
1
103
1
1
Philippines
919
9
1
137
1
1
Poland
2,216
156
7
389
3
1
Romania
1,443
102
7
204
3
1
Saudi Arabia
260
23
9
66
0
0
Senegal
129
10
8
7
Serbia
381
16
4
64
0
0
Singapore
176
10
6
28
0
0
Slovak Republic
489
12
2
74
1
1
Slovenia
182
2
1
21
0
0
6
2
Oman
Spain
1,655
75
5
270
Sri Lanka
498
43
9
137
Sudan
558
12
2
92
21
NA
Sweden
0
0
0
1
1
5
NA
Switzerland
582
13
2
115
1
1
Syria
252
24
10
48
4
8
Tunisia
162
7
4
38
0
0
Turkey
3,294
61
2
620
10
2
U.K.
5,420
198
4
1,153
11
1
13,276
738
6
4,209
69
2
185
3
2
30
1
3
Uzbekistan
1,032
73
7
117
Venezuela
1,613
82
5
436
2
0
Viet Nam
1,475
29
2
336
0
0
98,531
4554
5
25,160
302
1
United States
Uruguay
WFH Global Survey 2010
20
0
World Federation of Hemophilia Global Survey 2010
Age distribution: hemophilia A (73 countries reported age data)
Country
Albania
0-4
5-13
14-18
19-44
Age not
known
45+
6
40
50
120
16
107
272
202
811
407
Armenia
5
20
27
120
11
Australia
99
238
150
750
690
Austria
10
72
51
202
108
Azerbaijan
7
76
69
500
201
Bangladesh
16
136
106
154
25
0
Belarus
8
66
21
357
Belgium
29
109
68
275
324
8
7
1
1
376
1,570
1,074
4,120
1,253
56
152
Argentina
Belize
Brazil
Bulgaria
9
29
34
267
Cambodia
19
25
6
6
Cameroon
11
15
16
42
1
143
387
236
1,141
815
Chile
24
173
145
475
206
China
489
1,623
807
3,491
955
Colombia
26
130
131
472
136
Costa Rica
19
39
19
71
17
Canada
Cote d'Ivoire
50
0
45
551
6
20
12
8
2
2
Cuba
13
43
44
189
45
0
Czech Republic
38
79
71
282
248
Ecuador
27
103
45
174
51
37
Egypt
80
29
3
14
Eritrea
3
15
4
19
3
5
Ethiopia
8
10
6
7
4
France
271
732
447
1,923
1,118
Georgia
18
36
25
108
31
Greece
16
87
44
310
293
8
38
27
33
4
27
78
50
358
279
Iran
194
611
394
2,466
552
Iraq
131
239
131
155
20
34
96
36
214
134
5
30
30
20
10
71
239
192
803
217
28
147
34
12
57
28
Guatemala
Hungary
Ireland
Kenya
Korea, Republic
of
Kyrgyzstan
Latvia
4
14
21
0
0
25
0
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Country
0-4
5-13
14-18
19-44
45+
Age not
known
Lesotho
0
3
4
4
0
Lithuania
0
17
20
62
31
Malaysia
235
212
50
77
25
409
99
578
426
1,382
276
821
Moldova
4
21
20
114
68
Mongolia
6
12
8
24
1
Nepal
39
103
42
112
11
Netherlands
16
226
117
360
434
New Zealand
29
53
31
126
70
Nicaragua
84
87
84
25
Oman
16
32
12
29
1
Pakistan
177
312
170
502
46
Palestine
15
33
30
20
9
Panama
11
34
15
155
22
Paraguay
29
65
82
190
68
Peru
35
123
72
236
52
57
Philippines
33
246
164
327
54
95
Poland
44
174
151
1,209
693
Portugal
12
57
26
235
145
47
Romania
4
99
111
685
475
69
Saudi Arabia
56
92
51
59
3
Senegal
10
48
12
50
6
Serbia
21
46
44
160
110
Slovak Republic
22
41
25
239
162
Mexico
Slovenia
11
42
6
3
5
17
6
96
58
South Africa
80
265
158
714
368
45
Spain
39
157
89
787
452
131
Sri Lanka
43
149
38
26
5
237
Sudan
58
194
87
190
12
17
Switzerland
10
79
42
230
221
0
Syria
24
82
40
96
10
Turkey
United
Kingdom
189
764
483
1,421
437
0
279
702
461
2,113
1,862
3
Uruguay
15
40
15
47
30
40
Venezuela
Total
104
187
287
582
288
4,200
12,789
8,290
33,405
14,920
WFH Global Survey 2010
22
2,812
World Federation of Hemophilia Global Survey 2010
Age distribution: hemophilia B (71 countries reported age data)
Country
Albania
0-4
5-13
14-18
19-44
Age not
known
45+
1
4
4
7
2
Argentina
12
46
33
107
50
Armenia
1
2
2
13
Australia
9
15
66
27
203
152
Austria
5
8
9
26
18
Azerbaijan
1
4
5
6
16
Bangladesh
2
24
23
15
2
0
Belgium
4
19
12
63
75
2
2
1
2
60
335
217
739
261
4
Bulgaria
1
2
3
35
10
Cambodia
4
1
2
1
Cameroon
3
1
1
0
0
Canada
30
65
72
280
211
Chile
10
30
35
62
28
China
57
180
110
484
163
Colombia
6
38
22
101
28
Costa Rica
3
4
5
17
0
Cote d'Ivoire
1
2
1
1
0
0
Cuba
3
10
9
34
13
0
Czech Republic
5
15
12
45
38
Ecuador
1
13
8
14
7
28
6
2
5
1
1
2
3
2
4
2
1
France
65
172
93
424
233
Georgia
3
4
3
18
10
Greece
2
12
3
72
51
Guatemala
2
2
2
0
0
Hungary
2
24
21
84
76
Iran
26
121
80
550
105
Iraq
34
70
50
53
19
Ireland
23
93
16
75
58
10
3
73
36
173
45
Belize
Brazil
Egypt
Eritrea
Ethiopia
Kenya
Korea, Rep. of
18
Kyrgyzstan
19
108
7
1
1
4
12
Latvia
1
4
0
16
4
Lesotho
0
0
0
0
0
23
0
0
0
0
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Country
0-4
5-13
14-18
19-44
45+
Age not
known
Lithuania
2
2
3
11
4
Malaysia
65
46
7
28
4
30
Mexico
16
99
78
225
54
104
Moldova
1
1
1
6
5
Mongolia
4
2
2
4
Nepal
8
13
2
15
1
Netherlands
1
39
23
65
67
New Zealand
4
4
5
30
27
Oman
1
5
1
1
1
3
1
Pakistan
44
57
53
59
3
Palestine
2
4
10
12
Panama
1
7
2
14
1
Paraguay
2
2
3
5
2
Peru
5
30
23
30
7
8
Philippines
2
35
28
46
12
14
10
35
33
205
99
Portugal
2
13
4
50
31
10
Romania
1
18
6
80
90
9
Saudi Arabia
4
26
4
28
3
Senegal
1
4
1
1
Serbia
7
10
6
23
18
Slovak Republic
8
9
3
34
20
1
1
12
7
20
48
30
132
67
4
Poland
Slovenia
South Africa
Spain
8
23
16
128
82
13
18
41
10
2
0
66
Sudan
8
42
7
19
4
12
Switzerland
1
8
9
54
43
0
Syria
2
16
9
18
3
Turkey
United
Kingdom
45
155
94
246
80
60
133
86
504
370
Uruguay
1
11
8
3
2
28
50
75
150
75
813
2,453
1,573
5,983
2,858
Sri Lanka
Venezuela
Total
WFH Global Survey 2010
24
0
4
430
World Federation of Hemophilia Global Survey 2010
Age distribution: VWD (59 countries reported age data)
Country
Argentina
0-4
5-13
1
14-18
19-44
Age not
known
45+
7
20
179
3
3
4
27
198
125
759
639
Azerbaijan
2
11
17
78
30
Bangladesh
0
0
0
0
0
0
Belgium
32
221
101
570
404
10
Brazil
36
580
552
2,229
1,055
28
0
4
3
35
26
Armenia
Australia
Bulgaria
Cambodia
Cameroon
95
53
1
1
0
0
0
0
49
408
349
1,700
1,057
China
2
11
7
22
2
Colombia
3
4
38
75
7
81
1
1
7
16
51
36
0
14
9
37
12
7
15
2
382
Canada
Cote d'Ivoire
Cuba
0
Ecuador
Egypt
10
6
Ethiopia
France
42
196
100
466
15
7
10
122
67
271
214
0
6
3
7
2
Hungary
14
150
86
623
445
Iran
29
131
89
525
103
Iraq
37
48
68
25
4
Ireland
Korea, Republic
of
41
107
41
525
261
0
14
20
47
9
2
2
6
65
Georgia
Greece
Guatemala
Kyrgyzstan
0
0
Latvia
0
0
4
Lesotho
0
0
0
1
0
Lithuania
0
2
8
93
46
Malaysia
59
120
36
164
23
62
5
23
25
55
8
75
1
3
Mexico
Moldova
Mongolia
1
Nepal
29
0
3
3
1
Netherlands
3
30
37
59
118
New Zealand
1
23
20
50
41
25
42
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Age not
known
Country
0-4
5-13
14-18
19-44
45+
Pakistan
26
83
87
93
19
4
3
3
25
166
50
92
13
Peru
2
20
12
50
40
20
Philippines
0
7
9
7
0
6
20
165
134
601
282
Portugal
-
2
6
15
22
3
Romania
0
10
28
225
62
25
Saudi Arabia
4
10
34
26
1
Palestine
Panama
Poland
Senegal
1
Serbia
2
16
8
119
44
Slovak Republic
7
47
25
266
127
Slovenia
2
27
10
81
34
South Africa
6
57
59
246
184
27
Spain
4
19
24
286
263
106
Sudan
19
54
18
25
10
30
0
Switzerland
1
9
11
56
56
Syria
3
10
4
12
1
Turkey
United
Kingdom
36
185
100
209
44
0
173
880
735
4,014
3,379
6
Venezuela
51
96
155
298
141
786
4,321
3,360
15,479
9,779
Total
WFH Global Survey 2010
26
584
World Federation of Hemophilia Global Survey 2010
HIV and HCV infection (People currently living with HIV or HCV)
Country
Albania
Argentina
Armenia
Austria
Azerbaijan
Belarus
Belgium
Brazil
Bulgaria
Cameroon
Canada
China
Colombia
Costa Rica
Cote
d'Ivoire
Croatia
Cuba
Czech
Republic
Dominican
Republic
Ecuador
Egypt
Ethiopia
France
Georgia
Germany
Greece
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Israel
Italy
Japan
Jordan
Kazakhstan
Korea, Rep.
Lebanon
Lesotho
Lithuania
People
with
hemophilia
250
2,264
208
509
885
546
988
10,065
589
96
3,380
8,590
1,915
194
HIV+
1
64
HIV+
%
0.4
2.8
38
7.5
0
50
113
8
0
205
30
49
0.0
5.1
1.1
1.4
0.0
6.1
0.3
2.6
55
477
403
6
4
833
249
238
5,307
44
5,478
256
4,654
890
999
64
13,993
1,388
5,069
902
730
540
3,270
5,346
327
1,360
1,867
165
15
152
HCV+
HCV+
%
626
48
146
27.7
23.1
28.7
85
15.6
533
173
0
860
190
16
5.3
29.4
0.0
25.4
2.2
0.8
1.3
1.0
198
151
41.5
37.5
7
0.8
110
13.2
1
0
0
2
452
0
410
66
32
0
162
1
200
0
36
25
220
765
2
18
19
0
0
0.4
0.0
0.0
4.5
8.3
0.0
8.8
7.4
3.2
0.0
1.2
0.1
3.9
0.0
4.9
4.6
6.7
14.3
0.6
1.3
1.0
0.0
0.0
3
3
26
3
1,681
129
1.2
1.3
0.5
6.8
30.7
50.4
334
390
9
37.5
39.0
14.1
57
2,500
188
142
172
1,156
2,485
46
60
510
15
4.1
49.3
20.8
19.5
31.9
35.4
46.5
14.1
4.4
27.3
9.1
57
37.5
27
People
with
vWD
355
10
HIV+
1
HIV +
%
NA
HCV+
HCV+
%
NA
10.0
NA
3
30.0
NA
0.0
1.6
0.9
138
171
1,338
4,480
79
1
3,563
44
208
58
8
0
0
5
0.2
0.0
0.0
0.1
47
50
0
64
1.0
63.3
0.0
1.8
0
12
0.0
20.7
10
4.8
2
282
110
0
0
0.0
0.0
25
8
8.9
7.3
NA
71
35
455
17
1,186
22
4,447
684
1,318
96
477
877
182
975
4
1,650
944
215
460
90
63
1
149
NA
0
0
0.0
0.0
0
0
0.0
0.0
14
1.2
146
3
12.3
13.6
4
1
0
0
0
0.1
0.1
0.0
0.0
0.0
NA
30
109
0
0
4.4
8.3
0.0
0.0
NA
0
0
0.0
0.0
32
11
17.6
1.1
7
7
0.4
0.7
69
132
4.2
14.0
0
0
0.0
0.0
1
1
1.1
1.6
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Country
Macedonia
Malaysia
Mexico
Nepal
New
Zealand
Nicaragua
Oman
Pakistan
Palestine
Panama
Romania
Saudi
Arabia
Senegal
Serbia
Singapore
Slovak
Republic
Slovenia
South
Africa
Spain
Sudan
Sweden
Syria
Thailand
Tunisia
United
Kingdom
United
States
Uruguay
Uzbekistan
Venezuela
Viet Nam
People
with
hemophilia
315
1,188
4,527
336
HIV+
0
3
24
0
168
118
5
14.1
2.6
1.5
People
with
vWD
90
464
191
1
147
75
10
329
12
21
943
35.3
34.6
10.3
22.9
8.9
8.0
56.7
177
59
281
308
10
346
350
88
HCV+
HCV+
%
HIV+
HIV +
%
HCV+
HCV+
%
0
1
0
0.0
0.5
0.0
0
2
0
0.0
1.0
0.0
0
1
0.0
1.7
7
4.0
0
0.0
52
16.9
0
0.0
1
0.3
75
1
189
58
0
2
0
0.0
1.1
0.0
0
12
2
0.0
6.3
3.4
416
217
97
1,436
135
262
1,662
15
1
1.4
0.5
2.1
0.3
0.0
5.7
0.1
326
136
445
204
31
0
9
0
9.5
0.0
2.0
0.0
125
65
27.0
0.0
28.1
31.9
561
203
0
7
0.0
3.4
147
89
26.2
43.8
506
154
0
0
0.0
0.0
23
6
4.5
3.9
1,886
1,925
650
1,020
300
1,039
250
65
476
1
34
0
10
16
3.4
24.7
0.2
3.3
0.0
1.0
6.4
221
1,024
23
11.7
53.2
3.5
50
60
140
16.7
5.8
56.0
579
702
156
1,538
30
69
76
0
28
0
0
0
0
0.0
4.0
0.0
0.0
0.0
0.0
3
132
3
130
7
1
0.5
18.8
1.9
8.5
23.3
1.4
6,573
329
5.0
9,187
5
0.1
17,485
236
1,155
2,040
1,815
134,390
2,006
1
6
86
1
6,073
11.5
0.4
0.5
4.2
0.1
4.5
13,239
316
88
707
57
55,261
26
0.2
479
3.6
9
1.3
6
25
6.8
3.5
131
0.2
1,634
3.0
WFH Global Survey 2010
6
1
2
5
HIV+
%
0.0
0.3
0.5
0.0
6,471
71
300
324
114
24,242
28
37.0
30.1
26.0
15.9
6.3
18.0
World Federation of Hemophilia Global Survey 2010
Healthcare System
Number of Hemophilia Treatment Centres
A Hemophilia Treatment Centre (HTC) is a medical centre providing basic diagnosis and treatment for inherited
bleeding disorders.
A Hemophilia Comprehensive Care Centre (HCCC) is a medical centre providing a full range of facilities for the
diagnosis and management of inherited bleeding disorders.
Some patients seek treatment at more than one centre. Some centres treat all bleeding disorders. Not all HTCs are
comprehensive care centres.
Percentage of patients on prophylaxis
Prophylaxis is regular, long term treatment with clotting factor concentrates to prevent bleeds. When a zero is entered
in the table it means no patients receive prophylaxis. A blank means no data was reported.
Country
Albania
Argentina
Armenia
Australia
Austria
Azerbaijan
Bahrain
Bangladesh
Belarus
Belgium
Brazil
Bulgaria
Cambodia
Cameroon
Canada
Chile
China
Colombia
Costa Rica
Cote d'Ivoire
Croatia
Cuba
Cyprus
Czech
Republic
Dominican
Republic
Ecuador
Egypt
El Salvador
Number
of HTCs
1
1
1
2
7
1
1
3
7
151
7
2
Number
of
HCCCs
24
16
4
0
32
1
25
32
31
30
1
31
9
1
1
Percent with
access to
HTCs or
HCCCs
50
70
90
100
100
95
20
60
100
100
50
100
60
30
100
Percent
under 18
on
prophylaxis
0
58
Precise or
estimate
estimate
9
Percent
over 18 on
prophylaxis
0
29
Precise or
estimate
estimate
5
80
estimate
55
estimate
3
20
estimate
precise
40
precise
10
100
100
55
100
100
64
10
estimate
5
estimate
4
precise
2
estimate
49
precise
11
4
16
1
16
15
4
100
3
10
10
3
1
60
precise
100
29
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Country
Eritrea
Estonia
Ethiopia
Finland
France
Georgia
Germany
Greece
Guatemala
Honduras
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Israel
Italy
Jamaica
Japan
Jordan
Kenya
Korea,
Republic of
Latvia
Lebanon
Lesotho
Lithuania
Macedonia
Malaysia
Mexico
Moldova
Mongolia
Nepal
Netherlands
New Zealand
Nicaragua
Nigeria
Norway
Oman
Pakistan
Palestine
Panama
Paraguay
Peru
Philippines
Number
of HTCs
3
3
2
5
Number
of
HCCCs
0
1
2
72
5
4
2
19
1
14
13
29
5
4
3
52
3
15
4
1
1
17
0
1
16
2
1
1
3
1
60
75
2
3
2
13
6
1
4
1
2
14
1
0
2
1
6
7
WFH Global Survey 2010
Percent with
access to
HTCs or
HCCCs
100
39
80
95
2
0
40
13
1
3
3
1
Percent
under 18
on
prophylaxis
0
100
70
98
100
0
96
100
50
72
70
70
90
100
Precise or
estimate
Percent
over 18 on
prophylaxis
0
estimate
estimate
Precise or
estimate
estimate
estimate
0
50
estimate
estimate
30
estimate
30
50
10
100
60
precise
estimate
0
100
40
30
estimate
0
85
100
50
8
100
100
100
76
68.3
estimate
36.9
estimate
10
5
estimate
estimate
2
1
estimate
estimate
estimate
100
100
1
0
1
0
1
4
0
65
70
100
100
100
85
100
100
10
100
9
1
43
60
60
3
0
30
35
precise
0
precise
13
0
0
6
6
0
0
precise
World Federation of Hemophilia Global Survey 2010
Country
Poland
Portugal
Qatar
Romania
Russia
Saudi Arabia
Senegal
Serbia
Singapore
Slovak
Republic
Slovenia
South Africa
Spain
Sri Lanka
Sudan
Sweden
Switzerland
Syria
Thailand
Tunisia
Turkey
Ukraine
United
Kingdom
United States
Uruguay
Uzbekistan
Venezuela
Viet Nam
Zimbabwe
Number
of HTCs
21
19
2
12
5
4
1
7
3
40
1
4
52
2
1
3
9
3
42
4
34
2
81
Number
of
HCCCs
6
7
Percent
under 18
on
Precise or
prophylaxis
estimate
99 estimate
Percent
over 18 on
prophylaxis
10
Precise or
estimate
estimate
50
2
5
1
0
326
40
0
estimate
precise
40
0
estimate
precise
75
36
precise
precise
estimate
25
27
estimate
precise
estimate
80
80
4
100
100
14
4
0
5
6
100
98
40
100
70
100
precise
33
estimate
estimate
16
estimate
100
70
100
40
23
1
100
27
63
0
31
0
85
22
135
21
1
6
2
Percent with
access to
HTCs or
HCCCs
100
0
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Factor VIII per
capita
Factor VIII per
capita without
humanitarian aid
Total percent
plasma-derived
Total percent
recombinant
83%
75%
11%
85%
17%
24%
89%
11%
0.005
1.969
5.468
0.034
1.151
0.002
1.948
5.468
0.000
1.151
58%
42%
0%
0%
0%
100%
0%
0%
0
292,654
0
250,000
0
72,000
0.015
5.296
1.379
1.525
0.192
0.000
5.296
1.373
1.525
0.186
13%
0%
56%
100%
100%
52%
100%
44%
0%
0%
1,891,688
1,423,000
0
210,522
3.709
0.160
95%
20%
5%
80%
70,654,790
3,350,000
326,552,000
50,000
0
96,500
3.709
0.181
0.562
6.133
0.739
6.133
0.718
18%
99%
82%
1%
567,752,617
3,544,900
72,300,000
5,350,000
289553834.8
2,550,000
50,000,000
4,500,000
278,198,782
994,900
22,300,000
850,000
994,900
0
1,593,700
6.900
0.444
7.236
0.005
6.900
0.319
7.236
0.003
51%
72%
69%
84%
49%
28%
31%
16%
Indonesia
Iran
Iraq
8,006,750
120,000,000
20,000,000
6,240,000
120,000,000
0
1,766,750
628,880
20,000,000
0
0.033
1.560
0.674
0.030
1.560
0.674
78%
100%
0%
22%
0%
100%
Ireland
Japan
32,896,529
369,540,000
0
91,690,000
32,896,529
277,850,000
0
7.116
2.914
7.116
2.914
0%
25%
100%
75%
Jordan
Kenya
Korea, Rep. of
Latvia
Lebanon
5,702,306
331,908
138,758,500
2,884,190
2,000,000
38,800
73,298,000
2,884,190
293,108
65,460,500
0
308,350
331,908
0
357,136
0.890
0.008
2.853
1.300
0.485
0.842
0.000
2.853
1.300
0.398
0%
12%
53%
100%
0%
88%
47%
0%
Macedonia
Malaysia
Mexico
Moldova
Mongolia
3,564,600
14,810,000
67,140,750
1,742,400
249,200
3,564,600
14,620,000
64,494,500
376,100
50,000
57,500
155,750
2,646,250
1,339,000
199,200
0
2,408,650
1,369,900
249,200
1.720
0.524
0.597
0.404
0.081
1.720
0.524
0.576
0.086
0.000
100%
99%
96%
22%
20%
2%
1%
4%
77%
80%
New Zealand
Nigeria
41,383,600
313,604
0
313,604
0
313,604
9.732
0.002
9.732
0.000
0%
0%
0%
100%
Factor VIII
recombinant
0.167
2.424
6.959
1.716
Factor VIII
plasma-derived
0.402
2.438
6.959
1.752
Country
Albania
Argentina
Australia
Azerbaijan
Factor VIII total
IU
Factor VIII
humanitarian aid
Reported Use of Factor Concentrates: Factor VIII
1,200,000
100,800,000
149,723,404
14,545,400
1,000,000
75,600,000
17,029,250
12,396,400
200,000
24,600,000
132,694,154
1,530,000
700,000
600,000
Bangladesh
Belarus
Belgium
Bolivia
Brazil
754,000
19,000,000
57,000,000
334,079
231,392,750
439,000
315,000
364,500
200,000
0
57,000,000
Cameroon
Canada
Colombia
Costa Rica
Cuba
292,654
178,792,631
60,955,000
6,887,300
2,209,000
38,800
440,960
34,020,000
6,887,300
2,209,000
152,224
178,351,671
26,685,000
Czech Republic
Dominican Rep.
Ecuador
France
Georgia
37,833,757
1,783,000
8,307,800
397,206,790
3,400,000
35,942,069
360,000
Germany
Honduras
Hungary
India
WFH Global Survey 2010
300,000
334,079
32
510,363
179,495,000.00
16,404,500
2,248,937
26,500
25,623,250
522,549,500
69,704,500
Saudi Arabia
Serbia
Slovak Republic
Slovenia
South Africa
40,096,000
10,045,050
27,700,000
11,949,539
40,848,000
30,000,000.00
10,045,050
10,096,000
3,260,539
40,600,000
8,160,500
248,000
Sri Lanka
Sudan
Switzerland
Syria
Thailand
4,710,502
2,179,125
31,500,000
7,000,000
5,150,000
1,844,125
7,900,000
335,000
23,600,000
2,460,000
Total percent
recombinant
2,759,300
181,548,612
42,027,750
11,220,768
592,000,000
Total percent
plasma-derived
Philippines
Poland
Portugal
Romania
Russia
Factor VIII per
capita without
humanitarian aid
1,200,000
508,872
Factor VIII per
capita
11,250
258,079
1,800,000
13,892,500
Factor VIII
humanitarian aid
Factor VIII
plasma-derived
1,201,000
766,951
1,800,000
16,352,500
Factor VIII
recombinant
Country
Oman
Pakistan
Palestine
Peru
Factor VIII total
IU
World Federation of Hemophilia Global Survey 2010
0
666,951
155,000
60,000
0.405
0.004
0.716
0.547
0.405
0.001
0.654
0.545
1%
34%
100%
85%
100%
66%
0%
15%
2,248,937
0
0.028
4.720
3.915
0.511
4.247
0.005
4.720
3.915
0.499
4.247
18%
99%
39%
0%
88%
82%
0%
61%
0%
12%
0
1.558
1.368
5.064
5.965
0.832
1.558
1.368
5.064
5.965
0.832
75%
100%
0%
27%
99%
25%
0%
0%
68%
1%
373,976
335,000
0
216,750
424,982
0.219
0.050
4.132
0.315
0.077
0.202
0.042
4.132
0.306
0.070
0%
85%
25%
0%
15%
75%
0%
0%
153,640
533,770
0.401
1.466
7.511
5.157
0.019
0.387
1.466
7.511
5.157
0.000
77%
13%
31%
9%
23%
87%
69%
91%
0
354,280
17,769,424
1.506
0.046
1.433
1.506
0.042
1.418
41%
100%
42%
59%
0%
53%
269,655
0
0
Tunisia
Turkey
U.K.
United States
Uzbekistan
4,250,000
114,056,500
468,320,897
1,600,000,000
533,770
87,894,500
62211280
500,000,000
50,000
26,162,000
406109617
1,100,000,000
483,770
Venezuela
Viet Nam
41,000,000
4,132,000
6,013,837,683
17,000,000
4,132,000
2,484,086,280
24,000,000
3,157,733,556
0
The quantities of factor VIII in the chart above are as reported to the WFH and are not independently verified. In some
cases the numbers reported may be for one region or hospital only. Some countries report the amount of factor
concentrate consumed in the year 2010 while others report the amount purchased. Where available the percentage of
plasma-derived and recombinant product used is reported this distribution includes humanitarian aid. In cases where
the amount of humanitarian aid reported is lower than the WFH records for 2010, the higher WFH number was used.
The per capita number divides the total IUs used by the total population of the country. This gives an indication of the
amount of product being used in a country but cannot be used to determine the level of care for individual patients.
Please note that some FVIII products are used in the treatment of von Willebrand disease and not for hemophilia A.
33
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
11,900,000
2,126,500
1,104,000
50,000
Bolivia
Brazil
Cameroon
Canada
Colombia
50,000
48,723,350
12,593
43,612,325
11,969,000
48,723,350
10,563
6,640,082
8,364,000
Costa Rica
Cuba
France
Georgia
Germany
3,834,000
96,000
62,665,710
600,000
83,105,817.9
Honduras
Hungary
India
Iran
Iraq
2,900,000
23,579,250
0
50,000
50,000
Total percent
recombinant
14,800,000
25,705,750
1,104,000
50,000
Total percent
plasma-derived
Argentina
Australia
Azerbaijan
Bangladesh
Factor IX per
capita without
humanitarian
aid
300,000
Factor IX per
capita
Factor IX
humanitarian
aid
Factor IX
recombinant
Country
Albania
Factor IX
plasma-derived
Factor IX total
IU
Reported Use of Factor Concentrates: Factor IX
0.10044
0.10044
0%
0%
0.35798
1.19474
0.13296
0.00032
0.35798
1.19474
0.13296
0.00000
80%
8%
100%
100%
20%
92%
0%
0%
0.00503
0.24228
0.00065
1.29184
0.27076
0.00000
0.24228
0.00055
1.29184
0.27065
0%
100%
84%
15%
70%
0%
0%
16%
85%
30%
2,030
36,972,243
3,600,000
2,030
0
5,000
3,834,000
84,000
27,523,210
600,000
12,000
35,142,500
0
12,000
0
0.84894
0.00836
0.96754
0.13041
1.01000
0.84894
0.00732
0.96754
0.13041
1.01000
100%
88%
44%
100%
0%
0%
13%
56%
0%
0%
118,700
2,700,000
1,100,000
15,000,000
5,000,000
75,000
2,700,000
1,100,000
43,700
0
0
43,700
0
1,000,000
0
5,000,000
0
0.01486
0.27021
0.00094
0.19500
0.16851
0.00939
0.27021
0.00009
0.19500
0.16851
63%
100%
100%
0%
0%
37%
0%
0%
0%
100%
Ireland
Jordan
Korea, Rep. of
Latvia
9,457,250
70,000
26,194,500
485,000
0
9,457,250
0
70,000
2,928,000
485,000
23,266,500
0
0
2.04573
0.01093
0.53858
0.21867
2.04573
0.00000
0.53858
0.21867
0%
0%
11%
100%
100%
0%
89%
0%
Macedonia
Malaysia
Mexico
953,500
8,590,000
11,372,000
953,500
8,590,000
11,372,000
0
0
0
0.46016
0.30380
0.10111
0.46016
0.30380
0.10111
100%
100%
100%
0%
0%
0%
Moldova
Mongolia
New Zealand
Nigeria
Oman
74,500
43,500
10,345,900
0
0
74,500
43,500
74,500
43,500
0
0
0
0.01726
0.01409
2.43303
0.00000
0.00000
0.00000
0.00000
2.43303
0.00000
0.00000
100%
100%
0%
NA
NA
0%
0%
0%
NA
NA
Pakistan
Palestine
Peru
Philippines
Poland
187,151
120,000
4,341,000
294,312
20,116,000
187,151
120,000
4,341,000
25,875
20,109,000
187,151
0.00101
0.04772
0.14515
0.00295
0.52299
0.00000
0.04772
0.14515
0.00000
0.52299
100%
100%
100%
9%
100%
0%
0%
0%
91%
0%
Portugal
Russia
Saudi Arabia
Serbia
6,719,000
70,010,450
1,681,500
894,700
4,150,000
70,010,450
1,681,500
894,700
0.62585
0.50226
0.06535
0.12181
0.62585
0.50226
0.06535
0.12181
62%
100%
100%
100%
38%
0%
0%
0%
WFH Global Survey 2010
0
0
0
268,437
7,000
2,569,000
0
0
34
0
294,312
0
0
Total percent
recombinant
9695050
100,000
7,000,000
0
267,638,931
Total percent
plasma-derived
82,250,651
250,100,000
7,000,000
0
867,946,860
Factor IX per
capita without
humanitarian
aid
U.K.
United States
Venezuela
Viet Nam
Factor IX per
capita
243,000
5,000,000
Factor IX
humanitarian
aid
800,000
243,000
5,500,000
21,427,200
0.51185
0.26384
0.09774
0.51185
0.26384
0.09774
0%
0%
100%
0%
0%
0%
0.03719
0.00553
0.72146
0.27540
0.03719
0.00553
0.72146
0.27540
0%
100%
91%
0%
0%
0%
9%
0%
1.31921
0.80617
0.25713
0.00000
0.24038
1.31921
0.80617
0.25713
0.00000
0.23988
12%
0%
100%
NA
31%
88%
100%
0%
NA
54%
0
0
0
500,000
0
0
4,800,000
Sri Lanka
Sudan
Switzerland
Turkey
0
Factor IX
recombinant
2,800,000
528,500
4,800,000
Factor IX
plasma-derived
Country
Slovak Republic
Slovenia
South Africa
Factor IX total
IU
World Federation of Hemophilia Global Survey 2010
72555601
250,000,000
0
465,875,511
0
0
0
1,832,193
The quantities of factor IX in the chart above are as reported to the WFH and are not independently verified. In some
cases the numbers reported may be for one region or hospital only. Some countries report the amount of factor
concentrate consumed in the year 2010 while others report the amount purchased. Where available the percentage of
plasma-derived and recombinant product used is reported, including humanitarian aid. In cases where the amount of
humanitarian aid reported is lower than the WFH records for 2010, the higher WFH number was used. The factor IX
per capita divides the total IUs used by the total population of the country. This gives an indication of the amount of
product being used in a country but cannot be used to determine the level of care for individual patients.
35
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Sample Survey Questionnaire
A. National hemophilia organization
Organization name
Address
City
State, Province, Region,
Prefecture, County
Postal/ZIP Code
Country
Phone
Fax
E-mail
Website
B. Identified patients
(Please DO NOT estimate or guess)
Number
Not known
1. Number of identified people with hemophilia A and B (PWH)
2. Number of identified people with von Willebrand disease
(vWD)
3. Number of identified people with other hereditary bleeding
disorders (including rare factor deficiencies and inherited platelet
disorders)
The WFH would like to know how you collect the data you are providing for this survey. If you have a
registry, we would like to know more about the registry. A registry is a regularly updated centralized
list of identified people with hemophilia (PWH) or inherited bleeding disorders. A registry includes
information on personal details, diagnosis, treatment, and complications.
4. What is the source of the numbers
provided for this survey?
Check one
A registry of all PWH and other inherited
bleeding disorders in your country.
A registry of all PWH and other inherited
bleeding disorders in your country’s hemophilia
treatment centres.
Count information provided by all of your
country's hemophilia treatment centres
Count information provided by some of your
country’s hemophilia treatment centres.
Other (Describe):
Ongoing update (can be updated anytime)
Yearly update (the registry is updated once each
year)
Other (please describe):
Doctors update the database
Patient organization updates the database
Hospitals or clinics update the database
Other (please describe):
Is your database updated throughout the
year or only once per year?
Who updates the database?
WFH Global Survey 2010
36
World Federation of Hemophilia Global Survey 2010
5. Number of people with hemophilia and von Willebrand disease by age group
Age group
Number with
hemophilia A
Number with
hemophilia B
Number with
VWD
0-4 years old
5 - 13 years old
14 - 18 years old
19 - 44 years old
45 years or older
Patients with age
unknown
No age data
6.Type of hereditary bleeding disorder
Diagnosis
Total
Male
Female
Gender
unknow
n
No
data
Hemophilia A
Hemophilia B
Hemophilia, type unknown
von Willebrand disease
Factor I deficiency
Factor II deficiency
Factor V deficiency
Factor V+VIII deficiency
Factor VII deficiency
Factor X deficiency
Factor XI deficiency
Factor XIII deficiency
Other hereditary bleeding disorders: type
unknown
Platelet disorders: Glanzmann's thrombasthenia
Platelet disorders: Bernard Soulier Syndrome
Platelet disorders: other or unknown
37
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
7. How are patients with rare bleeding disorders (deficiency in FI, FII, FV, FV+VIII, FVII, FX, FXI
FXIII) identified?
Factor level below 5%
Severe bleeding symptoms
Other
(please describe):
No data
Other
(please describe):
No data
How are patients with von Willebrand disease identified?
Laboratory diagnosis
Severe bleeding symptoms
8. Number of identified people with hemophilia by diagnosis of severity
Type of hemophilia
Mild
(factor level
above 5%)
Moderate
(factor level
1% to %5)
Severe
(factor level
below 1%)
Severity
unknown
No
Data
Hemophilia A male
Hemophilia A female
Hemophilia B male
Hemophilia B female
9. Number of severe VWD patients
Total number of
severe (type 3)
VWD patients
Number of VWD patients
receiving replacement
therapy
Number of VWD patients
with severe bleeding
symptoms
No
Data
10. Number of identified people with hemophilia with current clinically significant inhibitors.
(Patients who do not respond to normal treatment.)
Type of hemophilia
Number with current inhibitors
No
Data
Hemophilia A
Hemophilia B
11. Products used to treat hemophilia: What percentage of patients is treated with the following
products?
Plasma
%
Cryoprecipitate
%
Plasma-derived concentrate
%
Recombinant concentrate
%
DDAVP (Desmopressin)
%
12. Products used to treat VWD: What percentage of patients is treated with the following products?
Plasma
%
Cryoprecipitate
%
Plasma-derived concentrate
%
DDAVP (Desmopressin)
%
WFH Global Survey 2010
38
World Federation of Hemophilia Global Survey 2010
13. HIV and hepatitis C infection among living people with hemophilia
Infectious
Number of people infected
Percentage of people tested
Disease
No
Data
HIV
Hepatitis C
14. HIV and hepatitis C infection among living people with von Willebrand disease
Infectious
Disease
Number of people infected
Percentage of people tested
No
Data
HIV
Hepatitis C
15. Number and cause of deaths of people with bleeding disorders (January 1-December 31, 2010)
Cause of
death
Number of people with
Hemophilia A & B
Number of people with
von Willebrand disease
Number of people with
other inherited bleeding
disorders
Bleeding
HIV
Liver disease
Other causes
C. Hemophilia care system in your country
A Hemophilia Treatment Centre (HTC) is a medical centre providing basic diagnosis and treatment for
inherited bleeding disorders.
A Hemophilia Comprehensive Care Centre (HCCC) is a medical centre providing a full range of facilities
for the diagnosis and management of inherited bleeding disorders.
16. How many hemophilia treatment centres are there in your country?
How many hemophilia comprehensive care centres are there in your country?
Percentage of hemophilia patients with access to hemophilia treatment centres:
Prophylaxis is regular, long term treatment with clotting factor concentrates to prevent bleeds. Please
indicate if the percentage provided is precise or an estimate.
17. What percentage of children (under age 18) are
on prophylaxis?
What percentage of adults (over age 18) are on
prophylaxis?
39
Precise:
Not known
Estimate:
Precise:
Not known
Estimate:
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
D. The cost and use of factor concentrates
18. Annual usage of factor concentrates
Factor VIII
Factor IX
Not
known
How many international units (IU) of factor
concentrates were used in your country in 2010?
How many international units of plasma-derived
concentrates were used in your country in 2010?
How many international units of recombinant
concentrates were used in your country in 2010?
How
many
international
humanitarian aid?
units
were
PLEASE NOTE: If a product used in your country is not listed, please add it at the bottom of the
appropriate table.
Currency:
Tax included? No
Yes
Tax rate:
18. Factor VIII concentrates used in 2010
(Please check the box on the left if a product is used, and if known, fill out the cost per international unit in
the currency used to purchase the product. Please indicate if this price includes tax.)
Used
Brand Name
Manufacturer
Price per IU
Aafact
Sanquin
Advate rAHF PFM
Baxter Bioscience
Alphanate
Grifols
Amofil
Sanquin OY
Beriate P
CSL Behring
BIOSTATE
CSL Bioplasma
Conco-eight-HT
Benesis
Confact F
Kaketsuken
Cross Eight M
Japanese Red Cross
Emoclot D.I.
Kedrion
FACTANE
LFB
Factor 8 Y
BioProducts Lab.
Faktor VIII SDH Intersero
Intersero
Fanhdi
Grifols
GreenEight
GreenCross
GreenGene
GreenCross
WFH Global Survey 2010
40
World Federation of Hemophilia Global Survey 2010
GreenMono
Greencross Corp
Haemate P
(= Haemate HS)
Haemoctin SDH
CSL Behring
Haemosolvate Factor VIII
National Bioproducts
Helixate NexGen = Helixate FS
CSL Behring
Hemofil M AHF
Baxter BioScience
HEMORAAS SD plus H
Shanghai RAAS
HEMORAAS-HP, SD plus H
Shanghai RAAS
HEMORAAS-IP, SD plus H
Shanghai RAAS
Humate P
CSL Behring
Immunate
Baxter BioScience
Koate DVI
Talecris
Kogenate FS = KOGENATE Bayer (in EU)
Bayer
Monoclate P
CSL Behring
Octanate
Octapharma
Octanativ-M
Octapharma
Optivate
Bio Products Laboratory
Recombinate rAHF
Baxter BioScience
ReFacto AF
Pfizer (Wyeth)
Replenate
Bio Products Laboratory
Wilate
Octapharma
Xyntha
Pfizer (Wyeth)
Biotest
Other:
19. Factor IX concentrates
(Please check the box on the left if a product is used, and if known, fill out the cost per international unit in
your currency.)
Used
Brand Name
Manufacturer
Price per IU
Aimafix
Kedrion
AlphaNine SD
Grifols
BeneFIX
Wyeth
Berinin-P = Berinin HS
CSL Behring
BETAFACT
LFB
Christmassin-M
Benesis
Factor IX Grifols
Grifols
Faktor IX SDN
Biotest
Hemo-B-RAAS
Shanghai RAAS
Immunine
Baxter BioScience
MonoFIX-VF
CSL Bioplasma
Mononine
CSL Behring
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Nanotiv
Octapharma
Nonafact
Sanquin
Novact M
Kaketsuken
Octanine F
Octapharma
Replenine – VF
BioProducts Lab.
Other:
20. Prothrombin complex concentrates
(Please check the box on the left if a product is used, and if known, fill out the cost per international unit in
your currency.)
Used
Brand Name
Manufacturer
Price per IU
Bebulin VH
Baxter BioScience
Beriplex P/N
CSL Behring
Cofact
Sanquin
Facnyne
Greencross Corp
Haemosolvex Factor IX
National Bioproducts
HT DEFIX
SNBTS
KASKADIL
LFB
Octaplex
Octapharma
PPSB-human SD/Nano 300/600
German Red Cross NSTOB
Profilnine SD
Grifols
Proplex – T
Baxter BioScience
Prothrombinex- VF
CSL Bioplasma
Prothromplex-T
Baxter BioScience
Prothroraas
Shanghai RAAS
UMAN Complex D.I.
Kedrion
Other:
21. Other products
(Please check the box on the left if a product is used, and if known, fill out the cost per international unit in
your currency.)
Used
Brand Name
Manufacturer
Price per IU
Clottagen (fibrinogen)
LFB
Fibrinogen HT
Benesis
FIBRORAAS (fibrinogen)
Shanghai RAAS
Haemocomplettan P =
Haemocomplettan HS (fibrinogen)
Riastap
CSL Behring
Factor VII
Baxter BioScience
Factor VII
Bio Products
FACTEUR VII
LFB
Factor X P Behring
CSL Behring
WFH Global Survey 2010
42
CSL Behring
World Federation of Hemophilia Global Survey 2010
Factor XI
Bio Products
HEMOLEVEN (Factor XI)
LFB
WILFACTIN (Von Willebrand
Factor)
Fibrogammin P (=Fibrogammin
HS) (Factor XIII)
FEIBA
LFB
NovoSeven (=Niastase)
(activated factor VII)
Coagil 7 (activated factor VII)
NovoNordisk
CSL Behring
Baxter
Pharmstandard
Price:
Vial size:
Price:
Vial size:
Other:
WFH Global Survey 2010
World Federation of Hemophilia Global Survey 2010
Glossary of terms
Bernard-Soulier syndrome: A severe congenital bleeding disorder characterized by
thrombocytopenia and large platelets, due to a defect in the platelet glycoprotein 1b/V/IX
receptor.
Cryoprecipitate: A fraction of human blood prepared from fresh plasma. Cryoprecipitate is
rich in factor VIII, von Willebrand factor, and fibrinogen (factor I). It does not contain factor IX.
Desmopressin (DDAVP): A synthetic hormone used to treat most mild cases of von
Willebrand disease and mild hemophilia A. It is administered intravenously or by subcutaneous
injection or by intranasal spray.
Factor concentrates: These are fractionated, freeze-dried preparations of individual clotting
factors or groups of factors derived from donated blood.
Glanzmann's thrombasthenia: A severe congenital bleeding disorder in which the platelets
lack glycoprotein IIb/IIIa, the blood platelet count is normal, but their function is very abnormal.
Hemophilia A: A condition resulting from factor VIII deficiency, also known as classical
hemophilia.
Hemophilia B: A condition resulting from factor IX deficiency, also known as Christmas
disease.
Hemophilia treatment centre: A specialized medical centre that provides diagnosis,
treatment, and care for people with hemophilia and other inherited bleeding disorders.
HIV: Human immunodeficiency virus. The virus that causes AIDS.
Identified person: A living person known to have hemophilia, von Willebrand disease, or
another bleeding disorder.
Inhibitors: A PWH has inhibitors when their body's immune system attacks the molecules in
factor concentrate, rendering it ineffective.
International Unit (IU): A standardized measurement of the amount of factor VIII or IX
contained in a vial. Usually marked on vials as 250 IU, 500 IU, 1000 IU or 2000 IU.
Mild hemophilia: Condition resulting from a level of factor VIII or factor IX clotting activity
below normal but above 5% of normal activity in the bloodstream. (National definitions differ on
the upper limit for mild hemophilia, ranging from 24% to 50%. The normal range of factor VIII
or IX is 50 to 200%)
Moderate hemophilia: Condition resulting from a level of factor VIII or factor IX clotting activity
between 1 to 5 % of normal activity in the bloodstream.
Plasma-derived products: Factor concentrates that contain factor VIII or IX that have been
fractionated from human blood.
PWH: Person with hemophilia
Recombinant products: Factor concentrates that contain factor VIII or IX that have been
artificially produced and are, therefore, not derived from human blood.
Registry: A database or record of identified people with hemophilia or inherited bleeding
disorders. A registry includes information on personal details, diagnosis, treatment and
complications.
Severe hemophilia: Condition resulting from a level of factor VIII or factor IX clotting activity of
less than 1 % in the bloodstream.
von Willebrand disease (VWD): An inherited bleeding disorder resulting from a defect or
deficiency of von Willebrand factor.
WFH Global Survey 2010
44
1425 René Lévesque Boulevard West, Suite 1010
Montréal, QC H3G 1T7 Canada
Tel.: +1 (514) 875-7944 Fax: +1 (514) 875-8916
www.wfh.org