In Malawi, it is expected that there are 1,800 people living with haemophilia. Of these, only 9 have been identified. This is because there are no facilities or trained staff in public hospitals to diagnose patients with haemophilia. With such a low number of identified patients, awareness of the condition is very low. People living with the condition do not realise that they have it. When healthcare professionals see a patient showing symptoms of haemophilia, they do not always realise what is causing them.
Establishing diagnosis, knowledge and awareness
This is why the NNHF Malawi project is the NNHF global fundraiser for 2016. With the funds raised, the project will establish a coagulation laboratory Kamuzu Central Hospital, a public hospital in Lilongwe. It will train lab technicians to diagnose haemophilia. It will deliver healthcare professional training so that there is a medical network who can identify patients and refer them for appropriate care.
Additionally, it will support a targeted awareness raising campaign that will help identify new patients and let them know where to get care and advice. All of these activities will culminate in a diagnosis day and patient education camp, to take place at the end of 2016.
Haemophilia is not a curse
One of the patients who will benefit from the project is 10-year old Osborne from Tongan. Unlike most people with haemophilia in the country, Osborne does have a diagnosis. This is thanks to the determination and perseverance of his parents – after seeing Osborne suffer for five years from swollen and painful joints, they undertook the 150km journey from their village to the hospital in Lilongwe.
With the doctors in Lilongwe suspecting haemophilia but unable to confirm the diagnosis, his parents took Osborne to a private laboratory for diagnosis, at great personal cost to themselves.
“We still don’t know what type of haemophilia he has, but at least we know he has it. We can tell our local doctors and our neighbours in our village about it” explains Alex, Osborne’s father. “Before he was diagnosed, people were accusing Osborne’s great grandmother of being a witch – saying she has cursed our family. Now they understand that the reality is that Osborne has a recognised medical condition.”
Engaging media and medical networks
Such incidences are caused by a lack of understanding of the condition, and are not isolated. That is why a crucial part of the NNHF project is an awareness campaign. This will use the media and medical networks to both help identify new patients, and increase understanding and empathy amongst the general public. To support the development of this campaign, the NNHF team delivered a 2-day strategic media engagement workshop to members of the patient association, in collaboration with Malawian journalists Jane Hauya and Tiya Kathewera.
As well as giving the participants – which included healthcare professionals, patients and family members such as Alex – the skills to engage media, it also provided the opportunity to develop a communications action plan together, and allocate roles and responsibilities accordingly. The team is now busy planning it’s first activity – an in-depth briefing session for media to help them understand the condition and the key needs surrounding this. This, and many other planned activities, are inspired by the NNHF Uganda project which also ran a strategic media engagement plan which resulted in a commitment from the government to support haemophilia diagnosis and care.
Like in Uganda, suspected patients identified through the awareness campaign will be invited for screening day in December, and those diagnosed on this day will then attend a patient education camp. Here, they will join patients like Osborne and his family, to gain a better understanding of how to live with their condition, and join a network of support and experience sharing.
Acquiring knowledge across borders
Alongside these awareness raising activities, NNHF lead project partner Dr Yohannie Mlombe is preparing to start his NNHF fellowship in June. The fellowship will take place in Johannesburg under the supervision of Prof Johnny Mahlangu. It will provide Dr Yohannie more in-depth knowledge of haemophilia as well as an understanding of the organisation of care, which will prove invaluable upon his return as he will be organising country wide healthcare professional training.