June 14, 2024
This article originally appeared in AABB News, a benefit of AABB membership. Join AABB today to read the rest of this month’s issue.
In Kenya, sickle cell disease (SCD) is a major public health concern and a significant contributor to child and adult morbidity and mortality. The Ministry of Health in Kenya, in partnership with Novartis, Non-communicable Diseases Alliance Kenya (NCDAK) and Academic Model Providing Access to Healthcare (AMPATH), launched the Sickle Cell Disease Afya Dhabiti Project in September 2023 to help reduce the burden of SCD in Kenya and strengthen health systems to improve patients’ access to quality care. The groundbreaking initiative aims to enhance the quality of life for people with SCD in Kenya through comprehensive awareness, education and advocacy in 17 high SCD burden counties. The three-year program will focus on training, research, capacity building of health care workers, affordability and accessibility to treatment.
NCDAK spoke with AABB News about the landmark achievement and the urgent need for a coordinated national strategy to effectively manage and prevent SCD across Kenya. The SCD Afya Dhabiti project addresses challenges in SCD management, such as stigmatization and weak support structures, through targeted awareness campaigns, policy advocacy and the formation of robust support networks. As an implementing partner of the new sickle cell program, NCDAK focuses on advocacy group formation and advocacy training to establish and train SCD champions in targeted counties and equip them with skills to advocate for their needs.
“Our first step is to map sickle cell warriors by county, and then we train them on advocacy and empower them to do their advocacy work at national and county levels,” explained Jared Owuor, NCDAK program officer. Since the program’s inception, NCDAK has mapped partners, networks and approximately 93 SCD advocates in seven counties and conducted seven advocacy trainings.
“The main goal is to target policymakers and community leaders with advocacy messages to influence budgetary allocations for comprehensive SCD interventions and increase prioritization of SCD management in health care plans,” Owuor stated.
Catherine Karekezi, PhD, NCDAK executive director, noted that SCD can be a highly stigmatized condition in the community. Many in the public have limited knowledge about the disease, and certain misconceptions and superstitions, such as attributing the disease to demonic possession or witchcraft, further hinders access to care and support for those affected and may cause ostracism in the community, she pointed out.
“Many families don’t actually come out and say they have children with SCD because of the stigma associated with the condition,” Karekezi said. “It is not only stigmatized, but it’s also the cause of family breakups and many psychosocial and emotional issues. Those are some of the challenges we’re also trying to address.”
Owuor shared he receives numerous testimonies from young people with SCD about their encounters with discrimination, particularly when seeking treatment and medication at a health care facility during a SCD crisis. Children and young adults often struggle in school, especially when teachers and students have limited knowledge about SCD.
“The school environment is not always supportive. Some students are in and out of school. We have examples of children who face many problems because their teachers don’t understand SCD and think they are lazy, which presents another barrier,” Owuor said. “Some have had to change schools. We hope this project will be an eye opener and help us develop and maintain a more systematic approach to managing SCD in Kenya.”
Approximately 14,000 children in Kenya are born with SCD annually, and an estimated 50-90% die before their fifth birthday without proper intervention.1 In contrast, the average life expectancy of publicly insured patients with SCD in the United States is roughly 52.6 years.2 The project will implement a newborn screening program in four counties to reduce mortality rate through early diagnosis and detection throughout Kenya.
“SCD was previously highly neglected in our country, and the Ministry of Health is focused on ensuring that SCD is not left behind as we look at the other non- communicable diseases,” Karekezi noted. According to the Ministry of Health, NCDs in Kenya account for more than 50% of total hospital admissions and more than 55% of hospital deaths.1 Despite the high early mortality rate of SCD, Karekezi remains hopeful about the program’s potential to improve the quality of life and life expectancy for Kenyan children and young adults with SCD. Owuor’s ongoing advocacy work with a growing number of young sickle cell warriors demonstrates progress, Karekezi pointed out.
“Previously, we didn’t have very many SCD warriors in that age group. They never received the support in early childhood, so they never made it to young adulthood. It’s a big battle that we’re facing, but now there’s a plan. We should be able to enable children born with SCD, so they have a fighting chance of reaching adulthood, especially with the newborn screening,” Karekezi noted. “People are becoming aware of SCD in the community. We hope that this will be something that will change the face of sickle cell disease in our country and in other regions of Africa.”
Sickle cell warrior and patient advocate Absolom Mukunga Simiyu, 26, lauded the program’s efforts to transform sickle cell care and offer Kenyan sickle cell warriors hope for a brighter future. Simiyu was diagnosed with SCD at seven months of age. He credits his family for helping him manage the disease, as well as his healthy lifestyle. SCD is a rough road paved with many challenges, he noted.
“The project has shone a ray of hope to warriors and our community at large in the effort to attain quality health and life for the warrior,” Simiyu said, expressing his gratitude to the project’s key stakeholders. “By creating awareness about SCD and encouraging screenings to ensure early diagnosis of the condition and by seeking the availability and affordability of vital drugs for the management of SCD, the program has proved to be of significant importance to us and our caregivers who bear the financial burden when it comes to taking care of us warriors.”
Although hydroxyurea is a commonly used drug to treat SCD in the U.S., research shows it has been underutilized in sub-Saharan Africa due to limited access, availability and costs.3 To that end, the Sickle Cell Disease Afya Dhabiti project seeks to reduce the cost of hydroxyurea to alleviate the financial burden faced by those battling this condition.
Owuor recalled a young sickle cell warrior breaking down due to the economic burden of SCD. The patient could not afford to pay for the costly medication and purchase groceries and other necessities. Unfortunately, this scenario is far too common in the community.
“Medication is not guaranteed in Kenya,” Owuor said, noting the added expense of laboratory monitoring. “Patients also need to get lab tests to see how well the medicine is controlling their disease, which is an additional cost. This doesn’t include nutrition and other factors that support optimal management of the condition. Treatment tends to be extremely expensive for the patient and their families.”
A 2019 study reported that hydroxyurea treatment was feasible and safe in children with SCD living in sub-Saharan Africa, reducing vaso-occlusive crises, malaria incidence and mortality.4 Despite the clinical benefits in children fighting SCD, hydroxyurea is still only recommended for adults with SCD per Kenyan clinical guidelines.
“We currently don’t have a pediatric formulation, so you have to make an extemporaneous preparation, which doesn’t guarantee you are giving the exact dose required for treatment,” Karekezi noted. “There’s a pediatric formulation in the pipeline, and we hope it will be available soon. The current drug being used is very expensive for the families.”
The shortage of qualified health care providers to treat SCD is a major challenge in sub-Saharan Africa, hindering patients’ access to quality care and treatment.
“Some patients with SCD are truly at a loss that physicians may not understand their condition, but we explain to them that some doctors are not well versed with the presentation of the disease and may not have seen a case in a decade depending on which regions they are posted to work,” Owuor noted.
A major component of the project will focus on provider education. To date, AMPATH has trained more than 140 health care providers across Kenya on treating the disease and managing patients with SCD at their facilities.
Karekezi noted the project highlighted an educational gap in Kenya’s health care system.
“Even though SCD is endemic in some of these counties, we found that health care providers in those counties were not well versed in its management and diagnosis,” Karekezi said. “SCD was previously not really prioritized. This program is aiming to change that.” Capacity building at lower-level facilities and health centers will help providers identify patients experiencing a sickle cell crisis and initiate treatment or refer them upwards.
“As more awareness is created amongst the health care professionals, we hope we’ll have a better handle on management, treatment and diagnosis of SCD to give children and young adults a chance to thrive,” Karekezi said.
Simiyu hopes the awareness campaigns will help the masses understand the plight of sickle cell warriors in Kenya and eradicate the stigma around the condition by bringing greater visibility to their challenges and the complications of SCD.
“To a sickle cell warrior, awareness means letting the masses know we are functional humans like any other capable humans, and we should be included in decision making, accepted in social circles and considered for jobs and other opportunities,” Simiyu told AABB News. “Awareness to us means being able to feel free, understood and accepted.”
“We Can All Spark Change”
What being a sickle cell warrior means to me...
Life can be hard sometimes, but that does not mean you should not fight or stay positive. Hold onto your worth, commitment and goals. You’ll soon get there. No condition is permanent.
Vivian Okello, 31, Nairobi, Kenya, has navigated rocky terrain with ups and downs throughout her sickle cell disease (SCD) journey, including barriers to treatment, health complications, stigma, pain crisis and financial hardship. She has received multiple blood transfusions since her diagnosis at two months old. The single mother of two credits her children and parents for inspiring her to push through adversity.
“Living with SCD takes an incredible amount of courage and strength,” Okello said.
Okello told AABB News she encountered intense bullying throughout her school years. Her classmates teased her about her appearance, often making fun of her wiry frame and jaundiced eyes. Her teacher mocked her because of her condition, telling her that SCD did not make her more special than other students. She became withdrawn as a result.
“Life was not easy in primary and secondary school. Things became a whole lot worse when people started calling me names,” she stated. “I always felt like I couldn’t fit in or do sports or any activities like the other kids. I never had friends. My parents recognized this, and they consoled and advised me. They became my pillar of support, joy and love.”
Okello said she is grateful for the opportunity to serve as a patient advocate for the Sickle Cell Disease Afya Dhabiti project. She hopes her story will encourage others in the fight and remind them they are not alone.
“We can all spark change. I want to be someone’s voice of hope. I want sickle cell warriors to get better and receive free treatment, and the project ensures that more individuals will receive timely diagnosis and care,” Okello said. “Sickle cell is not a death sentence. One day I’ll do great things for people. I believe good deeds and a little help can save lives.”
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