world federation of hemophilia · hemophilia a and b 400,000 people 200,000 severe 187,183 known to...
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WORLD FEDERATION OF
HEMOPHILIA
Mark Brooker
Senior Public Policy Officer
Barcelona – June 2017
B R I N G I N G O U R M I S S I O N TO L I F E
The World Federation of Hemophilia
improves and sustains care for people with
inherited bleeding
disorders around the world
Treatment for All
T R E AT M E N T F O R A L L
134 national member organizations
Founded in
1963
Recognized by
the WHO in
1969
The World Federation of Hemophilia improves and sustains care
for people with inherited bleeding disorders around the world
G L O B A L A L L I A N C E F O R P R O G R E S S ( G A P )
• Flagship WFH healthcare
development project
• Launched in 2003
• Foster partnership between
government, healthcare
providers and patients
• Develop sustainable national
care programs
• Multi-sponsored program
G L O B A L A L L I A N C E F O R P R O G R E S S
Government supportActively involving the government in allocating resources to hemophilia care
Care deliverySupporting the structure through which hemophilia services are provided in a country through a network of hemophilia treatment centres
Medical expertise and laboratory diagnosisEnsuring that medical professionals are well trained and patients are accurately diagnosed
Treatment productsHelping to enhance the supply of safe treatment products
Patient organizationProviding coaching on effective management, public relations skills, fundraising, advocacy, and patient education
G L O B A L A L L I A N C E F O R P R O G R E S S
Data Collection & Outcomes ResearchHelping to gather evidence needed to make the case for better care
P R E VA L E N C E A N D I N C I D E N C E R AT E S O F
I N H E R I T E D B L E E D I N G D I S O R D E R S
Source: WFH 2015 Annual Global Survey
Type Prevalence Incidence Rate
Hemophilia A and B 400,000 people 200,000 severe
187,183 known to WFH
A: 1 in 10,000 B: 1 in 50,000
Von Willebrand 6,000,000 people
74,819 know to WFH
1 in 1,000
Very rare bleeding disorders
– non FVIII, FIX, VWD
42,360 known to WFH 0.33 to 10 in 1 Million
W F H A N N U A L G L O B A L S U RV E Y
FVIII use over time: World, Lower, Middle and Upper Income
Report on the WFH Annual Global Survey 2015
FA C TO R V I I I N E E D E D F O R A P P R O P R I AT E T H E R A P Y
Evatt, Haemophilia 2002; 8:152
E S T I M AT E D G L O B A L F V I I I U S E
Asia Pacific60%
Africa16%
Europe10%
Latin America and the
Caribbean9%
Northern America
5%
Population
Asia Pacific18%
Africa2%
Europe34%Latin America
and the Caribbean
14%
Northern America
32%
FVIII TOTAL IU
Source: WFH 2015 Annual Global Survey and Worldometers
U S E O F P L A S M A A N D C RY O
Source: WFH 2015 Annual Global Survey
4
1
11 11
1920
6
4
0
5
10
15
20
25
Plasmaused Cryoused
Useofplasmaandcryoprecipitate2015
highincome,$12,475ormore uppermiddleincome,$4,036- $12,475
lowermiddleincome,$1,026- $4,035 lowerincome,$0-$1,025
U S E O F P L A S M A A N D C RY O
Source: WFH 2015 Annual Global Survey
G A P : I N C R E A S E I N I D E N T I F I E D P W H ( 2 0 0 3 - 2 0 1 6 )
0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15
Turkey - 2016 new
Vietnam - 2016 new
Egypt - 2015
Serbia - 2015
Mexico - 2014
Colombia - 2013
Morocco - 2012
Moldova - 2011
Syria - 2009
Belarus - 2008
Ecuador - 2007
Azerbaijan - 2005
Thailand - 2004
Armenia - 2004
Georgia - 2003
Philippines - 2003
Total DiagnosedPatients at GAPenrollment - Adjusted
Total NewlyDiagnosed/Registered Patients
G A P : I N C R E A S E I N FA C TO R V I I I I U P E R C A P I TA
( 2 0 0 3 - 2 0 1 6 )
0.0
00
0.2
00
0.4
00
0.6
00
0.8
00
1.0
00
1.2
00
1.4
00
1.6
00
1.8
00
2.0
00
2.2
00
2.4
00
2.6
00
2.8
00
3.0
00
3.2
00
3.4
00
3.6
00
3.8
00
4.0
00
4.2
00
4.4
00
4.6
00
4.8
00
5.0
00
5.2
00
5.4
00
5.6
00
5.8
00
6.0
00
China- 2016
Morocco - 2016
Egypt - 2015
Serbia - 2015
Mexico - 2014
Colombia - 2013
Morocco - 2012
Moldova - 2011
Syria - 2009
Tunisia - 2008
Ecuador - 2007
Jordan - 2005
Armenia - 2004
Thailand - 2004
Mexico - 2003
Egypt - 2003
GAP Enrollment(IU per capita) Year-end 2010 or 2011(IU per capita) Year-end 2012(IU per capita) Year-end 2014(IU per capita) Year-end 2015(IU per capita) Year-end 2016(IU per capita)
THANK YOU