Partnership Creates Lasting Impact for Blood Disorders Care
For too long, children and families living with blood disorders, such as sickle cell disease and hemophilia, in Kenya faced a lack of diagnostic tools, medications, and trained specialists. These conditions, which can be life-threatening without proper care, often went undiagnosed or untreated, resulting in unnecessary suffering and lost potential.
“Previously, care for people with hemophilia or sickle cell disease had not been given the attention it deserved,” said Dr. Festus Njuguna, head of the Pediatric Hematology-Oncology Unit at Moi Teaching and Referral Hospital (MTRH) in Eldoret. “The patients were undergoing a lot of suffering, and it was important for healthcare providers to step in and bridge this gap.”
Sickle cell disease is an inherited condition in which red blood cells become crescent or sickle shaped. These “sickled” cells are rigid and slow or block the flow of blood, causing extreme pain and tissue/organ damage. Sickle cell disease evolved as a protective mechanism against malaria-- carrying one copy of the gene that causes sickle cell confers some protection against malaria. Sickle cell is therefore much more prevalent in a malaria endemic area like Kenya, where it is estimated to affect 1% of newborns. Hemophilia is a heritable disorder that prevents blood from clotting in a typical way due to a lack of blood-clotting proteins.
Today, thanks to a long-standing partnership between MTRH and the Indiana Hemophilia and Thrombosis Center—now known as Innovative Hematology, Inc. (IHI)—care for people with sickle cell disease and hemophilia has shifted dramatically. Over more than a decade, this collaboration, rooted in AMPATH’s values of bidirectional exchange and equity, has transformed blood disorder care in western Kenya and inspired reciprocal innovations in Indiana.
A Collaborative Model for Hematology
The hematology partnership began humbly but has grown into a robust and far-reaching network. Dr. Njuguna and his team at MTRH, alongside counterparts from IHI, have built a program that not only treats patients but also trains providers, strengthens laboratory infrastructure, and connects families through education and support groups.
“All of this has been achieved in partnership with IHI,” said Cyrus Githinji, AMPATH’s sickle cell and hemophilia program manager. “They have walked this whole journey with us—supporting exchange programs for staff, providing medications, enabling diagnostic services, and helping expand care to our satellite centers.”
Anne Greist, MD, co-founder of IHI, has traveled to Kenya twice a year since 2011, often with multidisciplinary teams. “We get back a lot more than we give on each trip,” she said. “There’s a sense of shared purpose, of family, between our teams in Indiana and Kenya.”
Strengthening Systems and Saving Lives
To date, more than 10,500 healthcare providers across Kenya have received training in the diagnosis and treatment of sickle cell disease and hemophilia. This includes nurses, clinicians, pediatricians, laboratory staff and physiotherapists—all working together to build a comprehensive care ecosystem.
A key milestone has been the expansion of diagnostic services at MTRH. The hospital now regularly performs hemoglobin electrophoresis to confirm sickle cell disease (over 6,200 tests conducted) and specialized tests for hemophilia and clotting inhibitors (more than 700 completed to date).
As a result, care for these conditions in western Kenya has become dramatically more accessible.
A newborn and early childhood screening initiative has tested more than 15,200 children, helping estimate the region’s disease burden: 3% with sickle cell disease and 18% with sickle cell trait. Over 80% of children diagnosed have been successfully linked to care, with 1,100 receiving regular follow-up at MTRH. Ninety percent of the children receiving care are on Hydroxyurea, a critical medication that reduces complications and improves quality of life.
For patients with bleeding disorders like hemophilia, MTRH has become a hub of care. Today, 303 patients receive coordinated services, including medical care, physical therapy, and dental check-ups. Hemophilia primarily affects men. While estimates suggest 5,500 men in Kenya live with the disease, only about 1,000 have been identified. The program also has a goal to expand care to individuals with other bleeding disorders and reach women who are carriers of hemophilia, but have bleeding symptoms, or who have another diagnosis such as von Willebrand disease.
“The Kenyan team is really exceptional in their expertise and the level of care they provide for people with these two serious conditions,” said Terry Vik, MD, a pediatric hematologist-oncologist at Indiana University School of Medicine who serves as the in-country hematology-oncology lead for the AMPATH Consortium. “They show their dedication to improving the lives of their patients and expanding knowledge across western Kenya and beyond every day.”
Supporting Families and Advocating for Change
Beyond clinics, the program hosts regular community engagement events including twice-yearly comprehensive hemophilia clinics, patient support group meetings, and training sessions for patient leaders and local policymakers.
“We’ve built a platform for families to share their challenges and learn from one another,” Dr. Njuguna explained. “These groups give patients a voice and enable them to lobby for support and better care.”
Teen-focused events, such as a recent two-day camp for 33 adolescents with hemophilia, are helping young people learn to manage their conditions independently. At the camp, teens watched Bombardier Blood—a documentary about a mountain climber with hemophilia—and practiced self-infusions. They also traced family trees to better understand inheritance patterns and the role both mothers and fathers play in transmitting these conditions.
The peer connection and learning among patients and their families are now considered a key part of the treatment process.
Reciprocal Innovation and Global Learning
The impact of this partnership extends beyond Kenya. Staff from IHI return home with new insights into patient-centered care, adherence strategies, and the importance of community and family support.
“In Kenya, families tend to be more involved, and adherence to treatment is often better than what we see in the U.S.,” Dr. Greist observed. “It reminds us what’s possible when people are truly supported.”
The partnership has also helped catalyze innovations in Indiana, reinforcing a global understanding that improving health systems in one context can benefit others. Chris Roberson, chief research and strategy officer, noted that Innovative Hematology has modified their anti-coagulation clinic to more closely resemble AMPATH’s pharmacist-led program. “Our partnership with AMPATH has benefited our team as well as our patients in Indiana,” he said.
Looking Ahead: Building for the Future
As the program matures, partners are focusing on sustainability. With support from groups like the World Federation of Hemophilia, medications and supplies have been made available, but long-term solutions depend on public investment.
“Advocacy is critical,” said Dr. Njuguna. “We need county and national governments to take ownership and integrate blood disorder care into the broader health system.”
That includes expanding newborn screening for sickle cell disease, investing in diagnostic reagents, and continuing to train healthcare workers.
Technology platforms such as Project ECHO are already helping. Through virtual sessions, patients, families, and providers across Kenya and beyond are now connected, learning together and working for change.
“This partnership is about more than medicine,” said Dr. Njuguna. “It’s about building a future where no child in Kenya suffers needlessly from a treatable blood disorder.”
