WFH WORK IN NIGERIA

ENUGU, NIGERIAAUGUST 2014

Assad Haffar

Deputy Programs Director

2012

THE GLOBAL LEADER IN INHERITED BLEEDING DISORDERS

• International NGO

• WHO

• Unique: all stakeholders

WFH GLOBAL REACH (2014)

127 countries

WORLD FEDERATION OF HEMOPHILIA

OUR VISION: TREATMENT FOR ALL

One day, all people with bleeding disorders will have proper care, no matter where they live:

•Proper diagnosis and management

•Safe, effective treatment products

•Service for all bleeding disorders

OUR WORK

• Establish sustainable care in developing countries

• Promote quality, safety standards

• Provide training, education and capacity building

• Enhance patient empowerment

PREVALENCE OF BLEEDING DISORDERS

Hemophilia A and B• 400,000 people• 200,000 severe• 172,373 known to WFH

– 142,205 FVIII– 28,008 FIX

Von Willebrand− 6,000,000 people− 66,144 known to WFH

Very rare bleeding disorders – non FVIII, FIX, VWD− 35,549 known to WFH - no global estimate

Source: WFH 2012 Annual Global Survey

IDENTIFIED PATIENTS – REGION

GLOBAL VIEW

• 70% of people born with hemophilia are not diagnosed• Adequate treatment is available to about 25%; The other 75% face pain, isolation and early death• The majority of people with hemophilia in developing countries die before age 20

Living with haemophilia in this situation is like travelling in the dark without a light’

Megan Adediran

THE OPPOSITE PICTURE/DEVELOPING WORLD

• Hemophilia is unidentified/under diagnosed

•Basic Coagulation tests

• Patients suffer from early death/severe disabilities

• Primitive Blood Transfusion Services

• Bleedings are treated by whole blood/FFP/Cryo

I have seen only 4 cases of hemophilia in the last 20 years. Diagnosis was mainly clinical, and supported by an isolated APTT, no reagents for factor assay. They were treated by fresh whole blood and FFP. The equipment to prepare cryoprecipitate is not working.

A hematologist from Tanzania

WFH WORK IN THE AFRICAN REGION

Step 1:

•Promote the establishment of hemophilia groups

Step 2:

•Accredit the new groups as WFH National Member Organizations (NMOs)

JOINING THE WFH

• 1970: South Africa

• 1972: Nigeria

• 1977: Kenya

• 1988: Zimbabwe

• 1996: Senegal, Sudan

• 2004: Botswana, Eritrea

Only 4 countries 20 years ago

14 new countries in the last 10 years

• 2006: Lesotho• 2008: Cameroon, Ivory Coast• 2010: Ethiopia, Ghana, Tanzania• 2012: Mauritius, Uganda

• 2014: Mali, Mauritania, Togo, Zambia

WFH WORK IN THE AFRICAN REGION

Step 3:

•Support the National Member Organizations

• Hemophilia Organization Twinning (HOT)

• NMO training programs

• Coalition with health professionals

• Ongoing relations with government

• Good governance

o Board developments

o Volunteers

o Education

o Fundraising

Hemophilia Foundation of Nigeria with National Hemophilia Foundation (USA)

NHF ASSESSMENT VISIT IN 2012

WFH WORK IN THE AFRICAN REGION

NMO Board Training

• National (Nigeria 2013 and 2014)

• Regional (Cape Town 2009, Barcelona 2011, Dubai 2012 and 2014)

• Global (at Congress)

WFH WORK IN THE AFRICAN REGION

Step 4:

•Support health professionals in the country

• Hemophilia Centre Twinning

o 16 medical twinning partnerships in the last 12 years

• Medical training fellowships, 37 in the last 12 years

• In-country training programs

• Regional trainings (lab, nurses, physiotherapy)

REGIONAL PHYSIOTHERAPY TRAINING, KENYA 2011

REGIONAL NURSES TRAINING, KENYA 2013

REGIONAL WEST AFRICA LABORATORY DIAGNOSIS TRAINING WORKSHOP/ DAKAR, SENEGAL

WFH WORK IN THE AFRICAN REGION

Step 5:

•Help the country to develop a National Hemophilia Care Program

• Country Programs

• Global Alliance for Progress (GAP)

• South Africa (2011)

• Cornerstone Initiative

• Nigeria (2013)

• Ethiopia (2014)

GAP PSYCHOSOCIAL TRAINING, SOUTH AFRICA

MULTIDISCIPLINARY SYMPOSIUMAbuja, NIGERIA 2013

LABORATORY DIAGNOSIS TRAINING WORKSHOP Abuja, NIGERIA 2013

PHYSIOTHERAPY TRAINING WORKSHOP, ETHIOPIA

The Cornerstone Initiative

2013-2022

THE CORNERSTONE INITIATIVE 2013-2022

• Through training the WFH will lay the foundation cornerstone upon which future building and development may occur

• Targeted to underserved and impoverished regions of the world

• Designed to develop basic care– Develop or improve diagnosis

capacity– Provide basic training in the

management of bleeding disorders– Strengthen patient organizations

CORNER STONEYEAR 1, NIGERIA

Organize laboratory training•20 lab technicians from 7 cities participated in this 3 day laboratory diagnosis training workshop

Organize Basic training for front line doctors and health professionals•247 attended a one day training session on hemophilia care which was awarded CME credits by the Nigeria Medical Association

CORNER STONEYEAR 1, NIGERIA

Organize training for Board of Nigeria Hemophilia Foundation •9 Board members attended a one day training on strategic planning where 4 strategic objectives were identified for the coming 2 years

– Improve fundraising

– Improve availability of CFCs

– Increase public awareness

– Recruit volunteers

WFH WORK IN THE AFRICAN REGION

Step 6:

•Support some countries with product donations

•Product donations to Nigeria

– 2014: 400,000 IU

– 2013: 450,000 IU

– 2012: 1,000,000 IU

– 2011: 800,000 IU

– 2010: 350,000 IU

A total of 3 million international units over the last 5 years

A detailed report on utilization is mandatory. Failing of providing reports will stop future donations

WFH WORK IN THE AFRICAN REGION

Step 7:

•Create Cooperation between different countries in the African region

• South Africa

• Senegal

• Kenya

REGIONAL COOPERATION

TogoVisit of Dr. Diop from Senegal to Lome, Togo and meeting with hemophilia community

WFH WORK IN THE AFRICAN REGION ESTABLISH SUSTAINABLE CARE IN DEVELOPING COUNTRIES

The WFH Development MODEL

1.Ensuring accurate diagnosis and good Management

2.Achieving government support

3.Improving care delivery system

4.Increases treatment product availability

5.Building strong patient organizations

6.Enhancing data collection & outcomes research

THE FUTURE

•Try to work with Nigerian Ministry of Health in order to establish a National Hemophilia Care Program

•Establish a second medical twinning partnership between Lagos and Philadelphia (USA)

•Establish a comprehensive team in the Hemophilia Treatment Centres in all major cities

•Provide proper training to all team members

THE FUTURE

•Support Hemophilia Foundation of Nigeria (HFN) outreach programs in order to identify new patients

•Support the labs in the HTCs in major cities with proper training, quality control and reagents in order to do the diagnosis of new patients

•Increase donations of Clotting Factor Concentrates (CFCs) to Nigeria in order to reach 3-4 million IU per year

•Support Nigeria to become major target country in the future WFH African initiative

UNITED TO ACHIEVE TREATMENT FOR ALL

WFH National Member Organizations

WFH committee members & volunteers

Healthcare professionals

Public health officials

Industry partners

Donors

WFH executive committee members

WFH staff