Bradley RaynerPresident, South AfricaHaemophilia Foundation

Haemophilia in South Africa (SA) islike an expensive car and a donkeycart traveling on the same

highway. If you have access to treatmentcentres that have clotting factor, yourjourney is generally smooth… providedyou do not need the expensive inhibitorproducts. Should you, however, live inrural areas you travel the bumpy road ofpain, crippling and even death. In SouthAfrica people with limited access tofinancial resources who live in the ruralareas have the added challenge of getting tothe closest treatment centre. Unfortunately,travel delays have resulted in several casesof severe hemorrhaging ending in death. Inthe rest of Africa the situation is muchworse because of the lack of treatmentproducts and treatment centres.

In November 2003, in discussions withDr. Assad Haffar, World Federation ofHemophilia (WFH) Program Officer forAfrica, it became clear that the SAHF hadthe opportunity to improve and offer itsexpertise in the Southern African Region.But like any successful organizationlooking to expand we had to be successfulin our own country, especially improvinglocal regional committees (chapters).

An acronym that probably bestdescribes what we need to do is to applythe principle of TCPiD; that is, Team work,Communication, Personal involvement andDedication, so that we can improve healthcare for people with bleeding disorders.

The South African Department ofHealth has huge challenges to meet itsresponsibilities for all people in SouthAfrica. Illnesses like tuberculosis and HIVaffect a large percentage of the populationand are prioritized above haemophilia.Access to inhibitor treatment is a problem.A treatment programme for hepatitis is notreadily available because of budgetconstraints. Socio-economic issues impactaccess to treatment and quality of life.

Benefits of twinning

We decided that we needed executiveassistance to assist the SAHF strategicallyand to formulate a plan to set a path goingforward. We needed a partner that wasexperienced, established, and could advisethe SAHF on lessons learned, specifically asregards national and regional governmentstructures and geographical challengessimilar to our own.

We believe that an organization like theCanadian Hemophilia Society (CHS) isclosest to the ideal partner. The CHS hasmatured through various phases and canassist the SAHF in many initiatives:defining a strategic plan, assisting theSAHF with educational material andliterature that the CHS has available andthat the SAHF would find extremelydifficult to compile, sharing experiences inareas of common strategic importance,expanding networks and reaching out,sharing resources and gaining access tocontacts depending on the need, andchanging people’s lives for the better.

Phase one for the SAHF in 2006 is toadapt for SAHF the CHS strategic planningmethodology. We are currently developinga project plan and schedule for our ownstrategic planning event. We have the bene-fit of having a partner in the CHS withwhom we can communicate to assist withformulating and implementing our plan.

Challenges of twinning

We understand what has worked forCanada cannot be applied to the SouthAfrican context verbatim. Numerous socio-economic challenges have an impact onachieving the SAHF objectives.

Our expectation is not one of a “quickfix”, but a “journey of learning anddiscovery”, sharing ideas and alwayslooking for “quick wins” with a strategicobjective in mind.

The main challenge to achieving ourobjectives is having the participation andvolunteer base that represents all the stake-holders to assist with the project. Fund-raising is critical to financing the activitiesand hosting the event. Since the SAHF hasno paid staff, we must make time as perour schedule and tasks identified.

We are positively inspired by the visitwith the CHS in Canada and grateful forthe chance to participate in the strategicplanning session. The Canadian hospitalitywas warm and the people genuinelyinterested. The SAHF is grateful for thisopportunity created by the CHS and WFH.We look forward to making a difference!

The December 2005 issue of HemophiliaToday reported on the newly formed twin-ning between the South Africa HaemophiliaFoundation (SAHF) and the CanadianHemophilia Society. Since then representa-tives of the SAHF have visited Canada toattend the CHS strategic planning event inToronto in February and see the CHS inaction at national, provincial and regionallevels. Hemophilia Today asked the SAHFPresident to tell us about the twinning fromhis perspective.

A journey of learning and discovery: the South Africa–Canada twinning initiative

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GLOBAL PERSPECTIVE

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Representatives of the Canadian Hemophilia Society and the South African Hemophilia Foundation in SouthAfrica in September 2005.