Changemaker Using her Experience as a Sickle Cell Disease Patient to Drive Powerful Advocacy Work
July 27, 2022
Children in most communities signify hope, continuity and new beginnings. In the African setting they are received with delight and celebration, that can sometimes be dulled by a medical diagnosis. I know you are possibly wondering where this is going but read on to learn how one changemaker is impacting communities and transforming lives one diagnosis at a time.
8 years ago, Ruth Chipa walked out of hospital with her bundle of joy, and lots of hopes and dreams for her newborn baby. Nothing could have prepared her for the unfortunate turn of events that saw her in and out of hospital trying to find a cure for her daughter Grace’s sudden ill health. While Grace had been a healthy child at birth, she began to frequently fall ill from the age four months. Many hospital visits later, they finally had a diagnosis, Sickle Cell Disease(SCD). SCD is a genetic disorder that affects the shape of red blood cells into deformed crescents, which disrupt blood flow and can cause damage to bones, muscles and organs. Statistics show that approximately 6,000 children are born with SCD every year in Kenya. Sadly 50 to 80 percent do not make it to their fifth birthday.
Ruth had not heard much about the disease until then and was subjected to rumours, superstition and even stigma within her community with many declaring her bewitched and ostracising her. At home, her husband struggled with the news and distanced himself from the child. Even he thought that the child had been bewitched by Ruth’s family. She spent most of Grace’s first year helping her husband understand the disease and accept the child. At the same time, she was dealing with the costly medical care required to manage the disease which is characterised by pain, anaemia, predisposes one to infections and in later stages causes organ failure.
Hundreds of kilometres away from Ruth’s county in coastal Kenya, was a young sickle cell disease patient in her 20s who had also lived through the stigma, countless hospital visits and come face to face with the high cost of medical care for the disease. Lea Kilenga grew up in a family of 4 children and she and her two older sisters had sickle cell disease. Their parents took care of them with their medical cover coming in handy during what Lea describes as a ‘merry go round’ of hospitalizations. But once Lea turned 18, she could no longer be covered under her parent’s medical insurance. At this point she also realised that sickle cell disease was uninsurable in Kenya except for minors who accessed treatment under their guardians’ cover.
Each hospital visit would cost up to Ksh.30,000(USD 253) and this financial burden greatly bothered her.
“I wondered who was doing something about sickle cell disease in Kenya and I decided that I needed to make something happen,” she says.
In 2014, Lea set out on a project called 10,003 Warrior Project with the support of her brother and one of her friends. Through this project, she sought to find and photograph 10,003 SCD patients to demonstrate that many people were impacted by the condition and in need. She visited various parts of Kenya with high cases of SCD but stopped the project at the 400 mark.
“The situation was so dire, and I could not continue to document their stories without providing a solution. Most of the patients were children under 5 and a few adults. Majority of the children did not live past the age of 5. Those who did had multiple strokes and acute bone damage, brain damage and severe stunted growth due to lack of medical care.”
Using the stories collected, Lea persistently knocked on doors and lobbied Kenya’s Ministry of Health department of non-communicable diseases. This tough journey built her resilience and led to the creation of guidelines for the management and control of SCD, which were finally launched in 2021.
At this point Lea felt the urge to sharpen the focus of her advocacy work through redefining her vision and understanding how to tell her story. She joined the Amani Institute Social Innovation Management fellowship program in 2015.
“That journey that Amani takes you on shaped me and helped me to figure out that this was just more than a hobby. It also enabled me to understand how to approach my initiative and take it to the next level. The training gave me a new perspective where I interacted with the problem, not as someone living with it but as a solution provider for others. It gave me a chance to frame my approach to the problem, personal bias aside.”
Lea addresses a gathering in Taita Taveta
Armed with a fresh perspective and a strong changemaking resolve, Lea registered the Africa Sickle Cell Organization(ASCO) and moved to Taita Taveta County. Her work involves raising awareness on the disease and breaking myths that prevent families from seeking medical care. In her time here, two SCD clinics have been funded and established with the support of Novo Nordisk Haemophilia Foundation and the government. She has also successfully lobbied the county government, resulting in a dedicated budget that caters for medication at both clinics. The local hospitals have also increased diagnostic and clinical capacity and patients now access treatment under the National Hospital Insurance Fund medical covers, all provided through ASCO partners.This has brought medical care closer to the community enabling patients like Grace to access medical support.
Grace’s mum, Ruth, says that ASCO’s work has greatly impacted her family as she is now able to focus on her income-earning activities and support her family without the burden of medical bills. With her daughter’s condition now in check, she also has time to work as a Community Health Volunteer within her locality. Seeing her now 8-year-old daughter in good health and full of life fills her with great joy and renewed hope.
Lea’s big dream is that every parent that walks out of hospital with a child diagnosed with SCD, especially in low income communities, gets to see that child not just reach the age of five but thrive despite the condition.
If you would like to learn more about Lea’s work and support ASCO, connect with her on LinkedIn where she frequently shares her reflections, news and updates.