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