Sickle cell warriors are calling for better access to affordable treatment, flexible healthcare services and employment opportunities, saying the cost of managing the inherited blood disorder is taking a toll on their education, careers and family lives.
The warriors said recurrent illness can keep them away from work and school for weeks, while the cost of medication adds another burden to families already struggling to cope with the condition.
For 41-year-old Etemesi Ochola, the journey began at the age of seven when he was diagnosed with sickle cell disease and told he might not live beyond 10, 20 or 30.
More than three decades later, Ochola is pursuing a master’s degree, writing books and advocating for people living with the condition. However, he said recurrent illness has disrupted his education and made employment difficult despite his qualifications.
“There is fear of pain; there’s depression because you’re not getting jobs. You have gone to school, but no one wants to hire a person who is not feeling well,” Ochola said.
He wants the Government and employers to provide greater support for people living with sickle cell, including measures that allow them to remain in school and retain employment when illness forces them to take time off.
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The cost of medication is another concern. Ochola said hydroxyurea, which he takes daily, costs between Sh45 and Sh60 per tablet depending on where it is purchased.
He takes three tablets a day, in addition to folic acid and other medication, increasing the monthly cost of managing the condition.
He said the burden is even greater for families with more than one child living with sickle cell, with some parents struggling to afford medication for all their children.
Another warrior, 44-year-old Judy Malila, said recurrent illness cost her employment after she was away from work for two consecutive weeks.
Malila said sickle cell crises can become severe, leaving patients dependent on relatives for basic activities.
“Sometimes you are sick to an extent that you can't even walk,” Malila said.
She also challenged misconceptions surrounding the condition, including the belief that women living with sickle cell cannot have children.
Malila, who has two sons, said people living with the condition should be allowed to pursue careers, families and other ambitions when their health permits.
“We are human beings like the rest of human beings,” she said.
For 24-year-old Ivy Okoth, a sickle cell warrior, noted that misunderstanding of the condition was a major challenge during her school years.
Diagnosed at about one year old after showing symptoms as an infant, Okoth said she was bullied by classmates who accused her of pretending to be sick or receiving preferential treatment.
The situation improved after teachers brought medical professionals to educate students about sickle cell.
“Sickle cell does not define you,” she said.
They spoke during the fifth annual Sickle Cell Charity Football Tournament in Nairobi, where patients, caregivers and supporters called for greater support for affected families.
Children Sickle Cell Foundation Chief Executive Officer Selina Olwanda Ogweno said support must go beyond medical treatment to enable patients to lead productive lives.
She said the tournament also sought to reach young people with information about genetics and sickle cell, alongside screening for the disease, high blood pressure and diabetes.
Ogweno said partnerships with health facilities were expanding access to specialised care, identifying Kianda as the first public facility in Nairobi to establish a sickle cell clinic, with services offered every Tuesday.
French Ambassador to Kenya Wadid Benaabou said France was supporting early screening and training of healthcare workers, adding that addressing sickle cell required collaboration between the Government, development partners, civil society and health professionals.