Kenya 4 project: Joining together for better care of blood disorders

Lea Kilenga was diagnosed with sickle cell anaemia at just three months old. The diagnosis came as no surprise: her two older sisters already had sickle cell disease (SCD), an inherited red blood cell disorder with a high disease burden in sub-Saharan Africa.

Although her parents were told she might never see her ninth birthday, Lea beat the odds. In 2014 she founded the ‘10003 Warrior Project’ in memory of her eldest sister, who died of malaria-related complications. Today, Lea works tirelessly to raise awareness of sickle cell disease and advocate for better care. 

A unified approach to haematological disorders in Kenya

In 2018, the government in Kenya took steps to identify a strategy to address the lack of public health programmes and improve sickle cell disease treatment. Haemophilia was suggested as a model and potential source of synergies. The two disease areas face similar challenges: limited resources, lack of capacity, delayed diagnosis and unavailability of treatment.

Based on its successful referral system workshop for haemophilia, NNHF was asked by Kenya’s Ministry of Health to organise a similar event for sickle cell disease and began looking at ways to align local efforts. The workshop participants identified five strategic objectives, and in May 2019 the Kenya project team submitted an application for a pilot project with a unified approach to treating both conditions.

“I am happy that Kenya has taken steps to improve care for sickle cell disease,” says Lea. “The main challenge with this disease – aside from the symptoms, which include chronic anaemia, acute pain and long-term complications such as organ damage – is policy. Without a healthcare policy that prioritises sickle cell response and budget allocation at the highest level, patients living with sickle cell don’t stand a chance. Many die before reaching adulthood.”

First joint haemophilia and sickle cell clinic

In January 2020, Kenya’s first joint clinic treating haemophilia and sickle cell disease was opened with the support of NNHF, in partnership with the county government of Taita-Taveta and the Sickle Cell Federation of Kenya. Lea Kilenga attended the opening, along with many honoured guests including nine county First Ladies from across the country, representatives from the World Federation of Haemophilia (WFH), and the Kenya Haemophilia Association (KHA). Located in Voi, the largest town in the southern Kenya county, the treatment centre is staffed with trained and motivated clinicians able to treat patients with both blood disorders.

Dr Kibet Shikuku, a haematologist and NNHF project partner through the KHA, is enthusiastic about the potential of taking a unified approach to blood disorders: “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.”  

Despite the challenges of the COVID-19 pandemic, the Kenya 4 pilot project is moving ahead with activities such as the creation of a national patient organisation and sickle cell patient registry. Consolidated treatment guidelines for standardised care of sickle cell have been developed and are under review by Kenya’s Ministry of Health. Factor donations have been received from the WFH and a senior nurse has been allocated to the clinic. After lockdown is lifted, lab equipment will be brought to Voi and an expert from Kenyatta National Hospital will offer training. It is hoped that collaboration between the highly motivated sickle cell and haemophilia communities will help create awareness and leverage greater support for patients living with haematological diseases.

19 June 2020

Celebrate World Sickle Cell Day with a video from Lea Kilenga