Recently in-the news Igazi Foundation follows up the opening of the Eastern Cape’s first comprehensive haematology treatment unit at the Provincial Hospital in Port Elizabeth early in May 2012 with further benefits for the province:
It is thanks to the presence of the Aloe Igazi unit, the quality of its staff and facilities, that the Swiss-based Novo Nordisk Haemophilia Foundation (NNHF) has selected the Eastern Cape for a million rand grant for a rural haemophilia care project, according to Myron Leonard, president of the Igazi Foundation.
“The Novo Nordisk Haemophilia Foundation looked at the province and decided that we have the need, the talent and skills, to advance the goals of the foundation,” he says.
“We look forward to working with Igazi to support outreach for people with haemophilia and set up a reference centre, which will enable patients to access appropriate care more easily in Eastern Cape,” says NNHF project liaison officer Susanne Brunner.
“We have already had experience of working in South Africa, with a project in KwaZulu-Natal. So this is another step in supporting the development of sustainable change that will improve the lives of people with haemophilia in South Africa. The leadership of the Department of Health (DoH) and Igazi will be key to achieving the objectives of this project.
“If we look at what the Aloe Igazi Unit has achieved in such a short time, (an ultra-modern R20-million unit in less than two years of lobbying and facilitation by the Igazi Foundation, which was founded because the province suffers from one of the highest incidences of blood cancers in the country) we have a lot of confidence in Igazi, the Eastern Cape DoH, and the public and corporate supporters of Igazi. Certainly, the NNHF Council endorsed this project application very positively,” she says.
The unit has a history of outreach. Dr Neil Littleton, head of Department of Clinical Haematology at the Provincial Hospital, has been travelling to East London’s Frere hospital to hold monthly clinics in an outreach programme which is sponsored by a pharmaceutical company.
“To have been chosen as a partner for an NNHF Project is particularly gratifying for Igazi, as we have attracted commitment from this major international charitable entity within two years of the establishment of Igazi. This speaks volumes for our credibility as a responsible user of donated funds and the outstanding working relationship we have with DoH in the Eastern Cape,” says Igazi board member Richard Johnson.
“The Eastern Cape was identified by NNHF as an area ideal for a haemophilia care development project due firstly to the need to address under-diagnosis of haemophilia patients particularly in our extensive rural areas, as well as providing access to care which is presently difficult for many,” he says.
NNHF funding is granted to “sustainable, life-changing programmes reflecting our three focus areas – capacity building, diagnosis and registry, education and awareness – tailored to local needs,” says the NNHF.
Haemophilia, which is a chronic and disabling disease, is a serious health problem in the developing world, according to the NNHF. Without treatment cartilage, bones and joints are damaged, leading to early impairment, inability to function in society and work, and ultimately, low life expectancy.
Funding provided by the Novo Nordisk Haemophilia Foundation will be “spent primarily on training at all levels of health care – from ambulance personnel to specialist physicians – as well as raising awareness of haemophilia throughout the province,” he says.
“Haemophilia stands apart from many chronic life-threatening disorders in that when resources, care and effort are applied to its management, patient outcomes are generally excellent – permitting return to full and active participation in society. We look forward to working with Igazi, where we provide expertise and support whilst developing local sustainable future skills,” says Brunner.
According to Johnson, the programme will harness the existing structures within Eastern Cape rural communities. It will include outreach programs to circumcision coordinators “who are often primary health care providers to a large part of our population”.
Haemophilia almost exclusively affects males. In most cases it is an inherited genetic disorder due to a defect on the X chromosome. However the mutation can occur in suddenly in families with no prior history so it does remain a wider community concern. The clinical symptoms of haemophilia include easy bruising, excessive nose bleeds, musculoskeletal bleeding and excessive blood loss following injury or surgery. Bleeding from superficial cuts that last more than 15 minutes should “alert a clinician of a possible haemostatic disorder,” says the NNHF.
A related more common, but milder, condition is the von Willebrand (vWD) disease, where patients do not have the blood clotting protein called ‘von Willebrand factor’.
Treatment for haemophilia is based on intravenous injections of an active protein which has the ability to clot blood, either when a bleeding occurs or as a prophylactic.
The incidence and under-treatment of the disorders in the Eastern Cape provide both the opportunity and the need for Port Elizabeth, through the specialised haematology offered by the Aloe Igazi Unit, to develop into a centre of excellence for haemophilia care in the province, says Johnson.
Alan Straton
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