Cost of sickle cell: How patients are struggling silently with disease burden

At 41, Polycarp Wamalwa has lived with sickle cell disease for as long as he can remember. Diagnosed as a child, at a time when little was known about the condition in Kenya, he recalls a childhood filled with confusion, stigma, and endless hospital visits.

“My mother didn’t understand what was happening to me. I was always in pain, always in and out of clinics,” he says. “Back then, there was no awareness. People thought it was witchcraft.”

Polycarp is among an estimated 41,000 Kenyans living with sickle cell disease. While awareness has grown, the challenges remain overwhelming, particularly the cost of treatment.

“I have lost count of the friends I started clinic visits with who have died. Sometimes in our support group, someone posts that another member has passed away. It makes you scared and unsure of tomorrow,” he says.

For patients like Polycarp, every day is a delicate balance. Hydroxyurea,  the most widely prescribed drug, helps reduce painful episodes and complications. Newer treatments, such as L-glutamine (Endari) and Voxelotor (Oxbryta), have also shown promise. But the price puts them out of reach for most families.

“Most of us can’t afford them,” he explains. “I take five tablets every day. That alone costs about Sh100. Imagine the burden on a mother with two or three children living with sickle cell. All we ask is that the government makes these medicines free.”

As Kenya joins the world in marking Sickle Cell Awareness Month, patients and campaigners are urging the government to subsidise Hydroxyurea — a move they say could save thousands of lives.

According to Ministry of Health data, around 14,000 children are born with sickle cell each year, most in the western, Nyanza, and coastal regions. But doctors warn the disease is no longer confined to traditional hotspots.

Dr John Apella, a paediatrician at Baraka Health Clinic in Mathare Valley, says his clinic now treats patients from across the country.

“We have sickle cell clinics every Tuesday and Thursday, and I can tell you the disease is no longer restricted to certain regions. We see patients from Central and Northern Kenya, too.”

While screening has improved, treatment costs remain a stumbling block.

“The Social Health Authority was supposed to cover these medicines. But in reality, it doesn’t always happen. We still have patients who skip doses because they can’t afford them,” says Dr Apella, who works with German Doctors, a charity offering care in underserved communities.

Another challenge is data. Kenya lacks a comprehensive patient registry, making it difficult to track cases and plan interventions. Newborn screening is patchy, and many families still lack the knowledge to manage the disease.

Beyond treatment, doctors are pushing for prevention. Dr Apella strongly supports premarital sickle cell testing, comparing it to the mandatory HIV tests required by churches before weddings.

“With genetic conditions like sickle cell, we need to start thinking differently. Other countries such as Saudi Arabia and the UAE have already made such tests compulsory,” he says.

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• Ministry of Health
• Social Health Authority
• SHA
• sickle cell disease
• Hydroxyurea
• Cost of sickle cell: How patients are struggling silently with disease burden
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Polycarp agrees with this since he knows first-hand the impact of not screening.

“For my first marriage, I didn’t go for testing. My first daughter was born with sickle cell, and another child passed away. With my current spouse, we went for screening, and though my two children have the trait, they are not affected.”

For now, Polycarp and thousands of others carry on, managing daily pain while hoping for change.

“We live one day at a time,” he says. “Not just waiting for relief from the pain, but also from the financial struggle of managing this condition.”

As the country marks Sickle Cell Awareness Month, patients and doctors are united in their call that awareness is no longer enough. Lower drug costs, better screening, and informed choices are the steps that could finally break the cycle and save lives.