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
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