Joining forces for better care of blood disorders
What began as an off-shoot of Kenya’s fourth project supported by the Novo Nordisk Haemophilia Foundation has grown into a true joining of forces between the haemophilia and sickle cell communities. Together, they have laid the groundwork for a unified approach to impact the care of haematological disorders across the country.
Sickle cell disease (SCD) is an inherited group of red blood cell disorders with a high disease burden in sub-Saharan Africa. In 2018, the Kenyan government suggested haemophilia as a model and potential source of synergies to improve SCD treatment. People living with blood disorders in the region face limited resources, lack of capacity, delayed diagnosis and unavailability of treatment.
Synergies between disease areas
Kenya’s Ministry of Health first asked the NNHF project team to organise a workshop to share learnings about their successfully established referral system for people with haemophilia from primary care facilities to tertiary hospitals. The workshop, held in 2019, set the basis for collaboration between the two communities and inspired the team to submit an application for a pilot project taking a unified approach to address the challenges of both disorders.
Kenya’s first joint clinic treating haemophilia and sickle cell disease was opened in January 2020 with the support of the NNHF, in partnership with the county government of Taita-Taveta and the Sickle Cell Federation of Kenya. Located in Voi, the largest town in the southern Kenya county, the treatment centre is staffed with trained and motivated clinicians able to provide care for both blood disorders. At the same time, the Sickle Cell Federation of Kenya was registered and a team established to mobilise all sickle cell organisations in the country.
Dr Kibet Shikuku, a haematologist and NNHF project partner through the Kenya Haemophilia Association (KHA), commented: “Our new joint clinic is the first of its kind and will set a precedent for care in Kenya’s counties. Aligning our resources effectively enables us to share capacity, treat more patients, economise on infrastructure and better leverage our resources, for example with the training of health care providers, nurses and physiotherapists.”
Successful development of SCD treatment guidelines
Despite the challenges of the COVID-19 pandemic, the Kenya 4 team continued to decentralise care, completing the establishment of a haemophilia clinic at Kisii Teaching and Referral Hospital along with a satellite clinic in Murang’a County Referral Hospital. The pilot project also completed the creation of a sickle cell patient registry.
As part of the NNHF-supported project, the team at KHA held a fruitful meeting with representatives of the Ministry of Health on treatment guidelines and referral mechanisms for both haemophilia and sickle cell. They formed a team of experts to develop and submit consolidated sickle cell treatment guidelines which were approved and published by Kenya’s Ministry of Health at the end of 2020.
In January 2021, the first Annual General Meeting of the Sickle Cell Federation took place in a semi-virtual format. It is hoped that ongoing collaboration between the highly motivated haemophilia and sickle cell communities will continue generating sustainable impact to provide greater support for people living with haematological diseases in Kenya and beyond.