Haemophilia patients left in the lurch after Queen II closed

’MATHATO SEBOKA

MASERU – The Haemophilia Association Lesotho (HAL) was established in 2004 by health workers from Queen Elizabeth II Hospital (QE II) to address the healthcare needs of individuals affected by this rare genetic disorder. Acting as a vital link between patients, their families, healthcare professionals, the public, other non-governmental organisations, and the government, HAL endeavours to provide comprehensive support and advocacy.

Currently, HAL boasts over 90 registered members nationwide, reflecting its widespread reach and significance in the haemophiliac community. Haemophilia is a rare genetic bleeding disorder characterised by insufficient clotting of blood, leading to heightened susceptibility to bleeding and bruising. This deficiency arises due to inadequate levels of clotting factors, essential proteins responsible for blood coagulation.

Haemophilia manifests in several forms, ranging from severe to moderate to mild, depending on the quantity of clotting factors present in an individual’s blood. Medical intervention for haemophilia primarily revolves around replacing the deficient clotting factors. While no definitive cure exists for haemophilia, prompt diagnosis and treatment significantly enhance patients’ life expectancy, enabling them to lead fulfilling lives comparable to those unaffected by the disorder.

In an interview, Moeketsi Mootisa, President of HAL and a haemophilia patient himself, said the association currently manages 16 diagnosed haemophilia cases, comprising 13 males and one female. Mootisa lamented the loss of patients following the closure of QE II, emphasising the critical importance of timely treatment and care in preventing fatalities associated with untreated haemophilia.

He said the association plays a crucial role in advocating for the needs of the bleeding disorder community, including treatment, care, social support, and addressing challenges faced by patients and their families. Mootisa highlighted several challenges encountered by the association, ranging from insufficient treatment and care facilities to lack of expertise among healthcare workers in managing haemophilia patients.

Regarding the identification and diagnosis of patients, Mootisa emphasised the disparity between the estimated number of haemophilia cases in Lesotho and the actual diagnosed cases, indicating a pressing need for improved awareness and identification efforts. Additionally, he pointed out the limited availability of adequate treatment and care facilities outside of Maseru, underscoring the importance of initiatives like the dedicated clinic at QE II Hospital.

Financial constraints pose another significant challenge for the association, hampering its ability to support daily operations and essential administrative tasks. Mootisa stressed the need for funding to procure expensive treatment products crucial for the well-being of bleeding disorder patients, praising Lesotho’s government for its support while also advocating for additional assistance and subsidies to sustain the association’s growing activities.

He emphasised the critical role of the association in complementing the government’s efforts to manage bleeding disorders effectively, thereby reducing the overall financial burden on the healthcare system. Mootisa highlighted the high costs associated with untreated or mismanaged haemophilia, which not only strain government resources but also lead to long-term disabilities among patients.

Living with haemophilia poses significant challenges, as individuals are prone to injuries and bruises, limiting their ability to engage in normal activities. Mootisa underscored the importance of raising awareness and providing support to enable haemophilia patients to lead fulfilling lives despite their condition.