On a warm Thursday morning at Nyalkilnyi Health Facility in Homa Bay town, 37-year-old Everlyne Awuor sits quietly among fellow patients. Her face is weary but determined.
For most of her life, Awuor has battled sickle cell anemia, a condition that has tested not just her body but also her resilience as a mother of two.
For her, every day is a balancing act between survival and sacrifice. She relies on hydroxyurea, a vital medication that reduces the painful and sometimes life-threatening complications of the disease.
But at Sh50 per capsule, with a daily requirement of two, the cost is crushing. “Some days I don’t even have the money, so I am forced to choose between buying food for my children or my medication,” she says softly.
“If drugs for HIV and TB can be given for free, why not hydroxyurea? Sickle cell is just as serious as any other diseases that requires the attention it deserves for patients to get the needed support,” she says.
Sickle cell anemia is a genetic blood disorder caused when both parents pass on the sickle gene. It alters the shape of red blood cells, leaving patients vulnerable to chronic pain, fatigue, infections, and organ complications.
A child who inherits the gene from both parents develops the disease, while inheriting from just one parent makes them a carrier.
In Homa Bay, the struggle is not only genetic but also economic. Without regular medication, patients like Awuor endure agonizing crises that can last hours or even days.
“The pain is unbearable. It feels like my bones are being crushed from the inside,” she admits.
Hydroxyurea offers some relief by reducing the frequency of such attacks. Yet, despite its proven effectiveness, the drug is rarely stocked in public hospitals.
Patients are forced to buy it from private pharmacies, a cost many cannot sustain.
However, the financial weight is heavier for parents caring for sickle cell children. Ken Ouma, whose son was diagnosed at a young age, struggles to put his experience into words.
“It is painful watching your child cry in pain, knowing there is a drug that can help but you cannot afford it. To make it worse, the Social Health Authority does not cover these costs. Families are left to carry the burden alone,” he says.
For Jackline Oginga, another caregiver, every hospital visit is a reminder that the battle is not just against the illness but also against poverty. “Sometimes I wonder if we are being punished twice, once by the disease and again by the cost,” she laments.
Health experts say this is where government intervention is urgently needed. Médecins Sans Frontières (MSF), which supports sickle cell patients in Homa Bay, believes affordable and accessible medication would transform lives.
“Hydroxyurea is critical for improving patient outcomes, but so are preventive measures such as malaria treatment, vaccines and antibiotics, especially for children whose immune systems are already compromised,” says Steven Kimwaki, MSF’s Mobile Health Activity Manager for the region.
MSF currently supports patients across three facilities in the county, including Nyalkilnyi Health Centre, where over 170 people are enrolled. Yet, Kimwaki notes that many patients seek help only when complications are advanced, often due to limited awareness, stigma, and late diagnosis.
“There is still a misunderstanding around sickle cell. Communities must be educated to understand this is a medical condition, not a curse,” he adds.
Back at Nyalkilnyi, Awuor clings to hope that the government will one day treat sickle cell with the same urgency given to HIV, TB, and other chronic conditions.
“We are not asking for anything extraordinary, just a fair chance to live, to work, to raise our children without being destroyed by pain or poverty,” she states.
For now, her life just like that of many others with sickle cell in Homa Bay, remains a cycle of hard choices: choosing medicine or food, treatment or survival. Each day she continues to hope that her voice will finally reach those who can ease her burden.
By Sitna Omar
