For thousands of families across Kisumu County, sickle cell disease is not just a medical condition. It is a lifelong struggle marked by recurring pain, expensive treatment, missed opportunities, stigma, and an often frustrating search for healthcare services that remain out of reach.
As the world prepares to mark World Sickle Cell Day on June 19 under the theme "Closing the Survival Gap: Equity in Sickle Cell Disease," sickle cell warriors, caregivers and advocates in Kisumu are raising their voices, demanding urgent reforms to address the gaps that continue to deny them quality healthcare and dignified lives.
Their message is clear-despite years of advocacy and growing awareness, many people living with sickle cell disease in Kisumu still face significant barriers in accessing medication, screening services, specialized care and affordable treatment.
The concerns emerged during a meeting convened by the Kisumu County Non-Communicable Diseases (NCD) Advocacy Chapter, bringing together warriors, caregivers, civil society groups and county officials to discuss challenges facing people living with sickle cell disease and other NCDs.
At the centre of the discussion was a petition outlining what advocates describe as longstanding gaps in policy implementation, budgeting, healthcare access and patient representation.
"We want the government to understand that non-communicable diseases are becoming a major burden in Kisumu County," says Michael Mando, Kisumu County Advocacy Coordinator for NCDs.
"These conditions are expensive to manage, and many families are suffering. We want the county government to allocate resources that reflect the magnitude of the problem."
While non-communicable diseases such as hypertension, diabetes, cancers and chronic respiratory diseases continue to rise across Kenya, sickle cell disease remains one of the most neglected conditions despite its heavy burden in Western Kenya.
According to the World Health Organization (WHO), approximately 14,000 children are born with sickle cell disease every year in Kenya. Globally, more than 300,000 babies are born with the condition annually.
Kisumu County remains one of the country's hotspots.
Health data shows that approximately 1,500 children are born with sickle cell disease annually in the county. Nearly 30 percent of the population carries the sickle cell trait, making Kisumu one of the regions most affected by the disease in Kenya.
Experts attribute the high prevalence to the area's malaria-endemic environment. Over generations, the sickle cell trait has provided some protection against severe malaria, allowing the gene to persist within populations living around the Lake Victoria basin.
Yet despite the high prevalence, advocates say healthcare systems have not evolved fast enough to meet the growing needs of patients. One of the major concerns raised during the meeting was the cost of accessing healthcare.
Patients say recent changes at Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) have made care increasingly unaffordable.
According to advocates, consultation fees that previously stood at Sh50 have risen to Sh500 following the hospital's transition to a Level 6 facility.
For patients who require regular clinic visits, the increase has become a significant burden. "We are requesting the management of JOOTRH and relevant authorities to review these charges," says Mando.
"Sickle cell disease is not something somebody chooses. It is a condition people are born with. Many patients require frequent consultations and follow-up appointments. The current costs are making access difficult."
Beyond consultation fees, patients continue to spend substantial amounts of money purchasing medication out of pocket.
Although the Social Health Authority (SHA) has introduced coverage for some sickle cell services, advocates argue that many critical healthcare needs remain uncovered. "SHA has helped, but it is not comprehensive," Mando explains.
"It mainly covers admission services. Many warriors still buy medication from their own pockets. Families are still carrying a huge financial burden."
Michelle Omulo,33, a sickle cell warrior and advocate, says the financial realities facing many patients cannot be ignored. "What we want is for care to be brought closer to communities and made affordable," she says.
"Many warriors are not working because of their health challenges. Some struggle even to pay for SHA contributions."
She believes the government should consider subsidizing healthcare costs for vulnerable patients living with chronic conditions. "If consultation fees can be reduced and if insurance contributions can be made affordable, more warriors will be able to access care."
They also exposed concerns regarding the availability of medication saying essential medicines such as hydroxyurea, folic acid, penicillin and pain management drugs are often difficult to access outside major facilities.
Hydroxyurea, considered one of the most effective treatments for reducing painful crises and complications associated with sickle cell disease, remains inaccessible to many patients due to supply challenges and cost barriers.
"We want these medicines available in all sub-county facilities and Level Three hospitals," Mando says.
Advocates argue that concentrating specialized services at JOOTRH forces patients from rural parts of Kisumu to travel long distances, often during painful crises.
Many caregivers describe spending hours searching for treatment, medication and laboratory services.
The group is now pushing for dedicated NCD clinics and help desks in all Level Three facilities, with trained healthcare workers capable of managing sickle cell disease and other chronic illnesses.
Eric Magambo, a caregiver and representative of the Nyanza Youth Advocacy Forum, says many families feel excluded from conversations that directly affect their lives.
"There is still a gap between policy makers and people living with these conditions," he says.
Magambo says one of the key demands in the petition is meaningful representation of patients and caregivers within county health planning structures. The advocates are seeking inclusion in technical working groups, health committees and budgeting forums.
"They want seats at the table because they understand these challenges better than anyone else," he says. "Nothing about them should be decided without them."
Early diagnosis remains one of the most effective ways to improve outcomes for children born with sickle cell disease.
However, many newborns in Kisumu continue to miss screening opportunities, especially in lower-level facilities.
Speaking after receiving the petition, Kisumu County Executive Committee Member for Medical Services, Public Health and Sanitation, Dr Gregory Ganda acknowledged the challenges and promised continued investments in NCD care.
He noted that the county government is already working to establish wellness centres in every ward to improve access to chronic disease services.
"We are strengthening healthcare systems from the community level all the way to referral facilities," Dr Ganda says.
He pointed to ongoing investments in cancer services, HPV vaccination and specialized treatment facilities as evidence of the county's commitment to addressing NCDs.
Among the most ambitious projects is the establishment of a cancer centre and future bone marrow transplant services that could also support management of hematological disorders such as sickle cell disease.
"Kisumu should position itself as a centre of excellence for hematological disorders," Dr Ganda says.
However, advocates maintain that while progress is welcome, more deliberate action is needed.
Their petition calls for a dedicated NCD budget line, establishment of a County NCD Coordination Desk, implementation of a county-specific sickle cell policy and stronger enforcement of laws targeting risk factors such as tobacco and alcohol use.
The filmmaker and advocate has spent years challenging myths surrounding sickle cell disease while navigating her own health journey.
She says many people still believe the disease is linked to curses or witchcraft, misconceptions that fuel discrimination and social exclusion. "There is still a lot of stigma," she says.
She believes awareness campaigns, policy reforms and improved healthcare access must go hand in hand. Most importantly, she says, people living with sickle cell disease must be included in every conversation about their future.
"We are not asking for favours," she says. "We are asking for equal opportunities, affordable healthcare and the right to participate in decisions that affect our lives."
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