NAIROBI, Kenya, September 14 – Researchers at Kenya Medical Research Institute (KEMRI) have revealed that lack of sustainable funding for both research initiatives and patient support are key barriers hindering progress in combating sickle cell anaemia disease in Kenya.
KEMRI Wellcome Trust is currently undertaking research in collaboration with the Kilifi County Referral Hospital, which aims to excavate more ways to improve the survival and quality of life for people living with sickle cell anaemia.
KEMRI at the moment is also managing the Paediatric Sickle Cell Clinic in the hospital where it provides diagnosis for children and routine management.
Speaking to Capital FM, Dr. Sophie Uyoga, who is a researcher at Kemri and AG Deputy Director, Centre for Geographic Medicine Research (CGMR), said that lack of reliable funding is a major challenge in the deployment of more effective treatments for the disease, such as bone marrow transplants.
“The second challenge is that most research is funded by grants which poses a challenge in terms of sustainability,” she stated.
Dr. Uyoga further highlighted that financial constraints have prevented sickle cell patients from accessing treatment options and other expenses for transport, drugs, and laboratory tests in the clinic.
She, however, said that the institution is thus improving access to cheaper options such as hydroxyurea, which has also proven to be effective in the management of the disease through the NHIF/SHA program.
Furthermore, Dr. Uyoga stressed the need for economic empowerment so that patients can have the chance to better afford these medical services.
“Bone marrow transplant has become a more available option for our set-up, but access is impeded by the cost of the treatment,” she said.
“Most research is funded by grants which poses a challenge in terms of sustainability. Our work is centered on outpatient clinic visits hence access to care is limited by an individual’s ability to afford out-of-pocket expenses from transport, drugs, and laboratory tests,” she stated.
Sickle cell disease is a group of inherited disorders that affect haemoglobin, the major protein that carries oxygen in red blood cells.
Normally, red blood cells are disc-shaped and flexible so that they can move easily through the blood vessels.
In sickle cell disease, red blood cells are misshaped, typically crescent- or “sickle”-shaped, due to a gene mutation that affects the haemoglobin molecule.
When red blood cells sickle, they do not bend or move easily and can block blood flow to the rest of the body.
People who have sickle cell disease may experience serious health complications, such as chronic pain, stroke, lung problems, eye problems, infections, and kidney disease.
Sickle cell disease affects nearly 100 million people worldwide, and it is responsible for over 50% of deaths among those with the most severe form of the disease.
It is estimated that each year over 300,000 children are born annually with this disease, and over 70% of these births occur in Sub-Saharan Africa.
According to the Ministry of Health, 14,000 children are born with sickle cell disease annually in Kenya, significantly contributing to both child and adult morbidity and mortality, with high-burden areas being lake-region, western, and coastal regions.
“The sickle cell disease burden follows malaria endemic patterns in Kenya,” the Ministry of Health said last year.
According to Dr. Uyoga, earlier studies on the disease have proved that early diagnosis and routine outpatient management such as vaccinations, iron supplementation, and infection prevention of children with sickle cell disease enable them to survive better; however, lack of commitment is also a key barrier.
“The initial challenge was the stigma associated with the disease so families were not accepting the diagnosis. Continuous education of the patients and their caregivers has helped families to accept the condition. Intensive community engagement activities have helped to demystify the condition,” she stated.
To tackle this challenge, the institution has stressed the need for continuous education of the patients and their carers so that patients affected by the disease may accept their conditions and cooperate with treatment routines.
“The clinic has been operational for over 20 years and seeing a growing number of adolescents and youth accessing clinical services is a testimony to the success in the management of the condition,” she stated.
