Accessing haemophilia care in Uganda

The theme for World Hemophilia Day 2024 is ‘Equitable Access for All: Recognizing All Bleeding Disorders’. If you have haemophilia and live in a developed country, access to care tends to be good. In some parts of the world, though, there are various reasons why people with haemophilia find it difficult to access the care they need. An important paper by Agnes Kisakye and colleagues, recently published in The Journal of Haemophilia Practice, explores the reasons why people with haemophilia in Uganda might not access care and support quickly when they experience a bleed.

 

Uganda’s haemophilia landscape

The authors begin by describing the haemophilia landscape in Uganda. Only 7% of people with haemophilia are formally diagnosed, and there is no national policy on haemophilia care and management. Health care professionals follow the World Federation of Hemophilia (WFH) guidelines – as far as possible. As in many countries in the Global South, access to much of what the WFH recommends is limited, and treatment is mostly on-demand (rather than prophylaxis) due to insufficient supplies of factor products.

In the event of acute bleeding, people with haemophilia in Uganda are encouraged to report to one of the country’s seven Haemophilia Treatment Centres. The WFH recommends seeking treatment within two hours of the onset of bleeding, but data suggests that less than 30% manage to make it to their closest haemophilia centre in that time. Agnes and her colleagues were keen to understand the reasons for these delays in seeking care, and the barriers to accessing timely support. They hope that by understanding what might prohibit health-seeking habits, they can develop strategies and resources to enable people with haemophilia in Uganda to overcome challenges to accessing timely care.

 

Understanding the challenges

Through questionnaires, the researchers found that various social and situational factors had an impact on when and how people with haemophilia in Uganda seek treatment for bleeds. Those with less education were more likely to delay seeking treatment, highlighting the importance of community education programmes. People who had a good relationship with health care staff tended to seek treatment more quickly, but experiences during previous bleeds were also a factor. Those who had had to wait a long time for treatment in the past were less likely to seek support when they had another bleed.

They also found that only 14% of people sought treatment immediately when they experienced a bleeding episode. In fact, for one person it took 65 hours (almost three days) from the onset of bleeding symptoms to getting treatment at a haemophilia centre! Agnes and her colleagues compare this to a global study that suggests around two thirds of bleeds are treated within one to two hours following the onset of an acute bleeding episode.

One very important finding was that delays in seeking treatment weren’t always from lack of trying. The vast majority (85%) of people that Agnes and her colleagues questioned explained that high transport costs were a big challenge. The researchers found that people with haemophilia from hard-to-reach areas can spend many hours travelling, during which time bleeds may worsen. Consequently, they recommend that reimbursing transport costs for people with haemophilia could be an important possible future healthcare policy.

 

Finding solutions

Treating bleeding episodes early is associated with better health outcomes for people with haemophilia. However, as Agnes and her colleagues explain, one of the big challenges in Uganda is the lack of available resources to implement home treatment. This contributes to staggering delays in accessing treatment compared to the experiences of people with haemophilia in well-resourced countries. Introducing home treatment in Uganda could have a huge impact on improving quality of life for people with haemophilia – but it’s not an easy task to ensure a sustainable and accessible supply of factor across the country.

The authors reflect on the opportunity to establish more satellite Haemophilia Treatment Centres across Uganda, to reduce the challenges associated with distance. They also reiterate the importance of health education among people with haemophilia in Uganda, to ensure that people understand the risks of not seeking support immediately and the benefits of early treatment. They conclude by calling for the Ugandan government to ‘purchase treatment products rather than depending on donations which are not sustainable’.

 

Solidarity and sustainability

The high cost of treatment for bleeding disorders is prohibitively expensive and campaigns such as the World Federation of Hemophilia’s Humanitarian Aid Program are vital. Ultimately, though, as a community, we need to do more to develop international solidarity and campaign for affordable treatment for all if we want to ensure sustainability and equity of care globally.

 

Further reading

Kisakye A, Kasirye PG, Muramuzi D, Opuch D, Nampiima K, Ndeezi G, Yeka A, Vultur H. Factors associated with delays in seeking treatment for acute bleeding among persons living with haemophilia in Uganda: a cross-sectional mixed methods study. J Haem Pract 2023; 10(1). doi: 10.2478/jhp-2023-0018

 

About the author

Rich Gorman lives with severe haemophilia A. He works as a researcher at Brighton and Sussex Medical School.

 

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