Mali 1 project: reaching out to ensure a better life for people with haemophilia

Improve haemophilia care by capacity building and awareness creation.

“As a child I remember watching other kids playing football and wondering why I could not play. I did not know what was wrong with me. Sometimes I had to stay at home, away from school for 2-3 weeks”. Despite being one of the very few people in Mali formally diagnosed with haemophilia, Daouda Mallé still faced a childhood full of uncertainty and unexplained pain caused by his condition.

Now 28 years old, Daouda remembers that there was no patient organisation in place and very little information about how to manage the condition when he was initially diagnosed in the early 1990s.

In fact, up to 2016 only 42 people with haemophilia had received a formal diagnosis in Mali. There were only six trained haematologists living in the country, and only two of them actually working in haemophilia. Dr Yacouba Diallo was one of those two. Dr Diallo knew that too many people were still undiagnosed and living a life of pain and isolation, so he set out to change that.

In 2016 only 42 out of 1,640 people with haemophilia were  diagnosed in Mali. 

Reaching people with haemophilia in Mali

The Mali 1 project started in 2016 with the main objectives of identifying as many new people with haemophilia and establishing haemophilia care in the regions by training healthcare professionals.

As a first step, Dr Diallo visited the Kenya Haemophilia Association to learn from their team, who has been a NNHF partner since 2012. The collaboration allowed Dr Diallo to get a better understanding of haemophilia, its impact on the African population and strengthened the ties between the two teams.

Using awareness to build a strong haemophilia network

To help identify new people with haemophilia, the project team started by creating awareness about the condition and organising outreach visits to densely populated cities. During one of his first outreach visits to deliver an educational session to traditional practitioners, Dr Diallo was confronted by a system of strong ethnical beliefs which attributed the symptoms of haemophilia to witchcraft, leading to marginalisation of people with haemophilia and their families. “I realised how crucial it is to educate the population, not only traditional practitioners but also families, and explain to them that people are suffering from a medical condition and are not victims of witchcraft,” Dr Diallo recalls. “This simple distinction makes a big difference to people’s lives.”

That first session set the tone and helped shape further educational sessions in the Bamako, Kayes, Sikasso, Ségou and Mopti regions of Mali. The project team adopted an integrated approach, involving healthcare professionals, traditional practitioners and families in each of the sessions. These sessions led to the creation of a haemophilia network between people with haemophilia, healthcare professionals and traditional practitioners. Inspired by a new sense of empowerment, each group now plays an active role in creating change. Today, people with haemophilia like Daouda are more engaged and create awareness by sharing their experiences both in Bamako and across the other regions. Daouda, who has learned how to self-infuse, notes: “The educational session taught me a lot. If haemophilia is explained in a good way – meaning if people receive good information about haemophilia – there will be fewer problems and fewer disabled people”. 

“Collaboration is key“ observes Dr Diallo

Engaging the media to reach out to more people with haemophilia

The project team knew that to reach out to as many people living with bleeding disorders as possible they had to engage the media. They started to broadcast an awareness radio documentary over the period of one year then produced a short movie which was broadcasted in collaboration with the national television and subsequently retransmitted by other TV stations. Team members also undertook a series of media interviews. The media coverage resulted in consultations with those who had seen the movie or the interviews and recognised that they were experiencing the symptoms being described. By the end of the project, the number of people diagnosed with bleeding disorders had risen to 123.

To ensure newly identified people with haemophilia received the right support, wherever they live, the team also established a WhatsApp group to answer questions, provide support, and make referrals when needed.

Establishing basic haemophilia care across the country

The team presented the results of the project at the WFH Congress in Glasgow, UK in May 2018, showing the remarkable progress that had already been made in the country. Thanks to what has been achieved with the NNHF Mali 1 project, there is now greater knowledge about the condition across the country, basic care is available in key regions and people with haemophilia can receive care closer to their home. Before, many people had to travel 700-800 km to Bamako and stay in hospital for 2-3 days to receive basic care, missing school or days of work. The cost of the travel for the family was also very high, with many unable to afford it. That’s no longer the case for people like Daouda and his fellow people with haemophilia in Mali. Yet, there is still a need to travel to the capital city to receive advanced care. The Mali 2 project subsequently approved in November 2018 will focus on increasing the diagnosis rate even further by focusing on advocacy, training healthcare professionals and physiotherapists, decentralisation of care, and educational activities in three regions.