Early in 2016, while 1,600 people were expected to be living with haemophilia in Malawi, diagnosis was not possible as the country was lacking public facilities and expertise to provide diagnosis and care for people with haemophilia and allied bleeding disorders.
Among the patients awaiting to have access to haemophilia care and treatment in the country is Osbourne, a 10-year old boy, who suffered from the symptoms of haemophilia since he was three months old. (Read the article published in April 2016)
To address this need, the Novo Nordisk Haemophilia Foundation (NNHF) partnered with Dr Yohannie Bily Mlombe of the University of Malawi, College of Medicine to establish haemophilia care in the capital city Lilongwe and perform outreach activities in Blantyre and Zomba.
Today, thanks to the joint efforts of a variety of local and international experts and engaged individuals, people in Malawi can receive haemophilia care at the Kamuzu Central Hospital in Llilongwe, where the first haemophilia clinic was officially inaugurated by the Ministry of Health in November 2016.
Furthermore, international experts Dr Kate Khair, from Great Ormond Street Hospital in London, and Dr Angus MCraw from UK provided professional training to more than 70 healthcare professionals in the capital, as well as in the cities of Blantyre and Zomba, and to 14 lab technicians in Lilongwe, where a diagnosis facility was established as part of the project.
“Teaming up with expert trainers from the UK, patients and healthcare professionals across Malawi, as well as organisations like the WFH, NNHF and Haemophilia Scotland has been key to our success in establishing haemophilia care. It means we have been able to train lab technicians and healthcare professionals to diagnose and care for patients, and that patients and family members are now acting as ambassadors to raise awareness of haemophilia. Teaming up has definitely helped create this change," said Dr Mlombe.
To enable change, the team knew that it was crucial to inform the largest number of people about the condition. Therefore, Mrs Chimwemwe Chande, president of the patient association, led a media campaign to raise awareness of the symptoms of haemophilia, and asked those who were experiencing those symptoms to contact the patient association.
More than 1,000 calls were received as a result of the campaign of which around 200 were invited for a medical consultation and those suspected of having haemophilia were referred for diagnosis at the hospital in Lilongwe.
Thanks to the new expertise acquired, the establishment of the haemophilia clinic in Lilongwe and the awareness raised in Malawi, more than 40 patients coming from different regions of Malawi were able to receive diagnosis. Many more may be identified in the upcoming months, as the team pursue the screening of the calls received by the patient association following the media campaign.
Among the people benefitting from the project and able to receive diagnosis at the screening day held in November 2016 was Osbourne who had initially received a diagnosis in 2015 in a private lab, but was not aware of the severity nor the type of the condition.