The ASH-sponsored Consortium on Newborn Screening in Africa (CONSA) is an international network that seeks to demonstrate the benefits of newborn screening and early interventions for children with sickle cell disease (SCD) in sub-Saharan Africa. Members of the consortium met Friday in San Diego to report on their progress and share their respective insights. Bernard Awuonda, MD, lead of the CONSA project in Kenya, writes about his experiences. He is a consultant pediatrician, lecturer, and hematology-oncology fellow at Maseno University and Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu, Kenya.
In Kenya, approximately 14,000 babies a year are born with SCD. However, despite previous newborn screening (NBS) initiatives in the country, such efforts have yet to be scaled nationwide. This is partly because Kenya, like most African countries, faces several challenges, including the cost of setting up NBS programs and integrating them into the health care system, budgetary constraints, and the burden of other diseases such as HIV, malaria, tuberculosis, and malnutrition. The good news is that while SCD has previously not been considered a priority in Kenya, despite being a public health burden, the landscape has changed rapidly, with a new Ministry of Health department created to address the issue. This is particularly promising for Kisimu County, which lies within the western Lake Victoria belt of Kenya, as it has the country’s greatest prevalence of SCD, as well as the highest burden of endemic malaria infections.
To date, one of the greatest achievements of CONSA in Kenya has been helping quantify the burden morbidity and mortality from SCD in children under age 5 in an effort to attract policy support and resources to promote prevention, early diagnosis, and treatment. With CONSA support, we have been able to set up a systematic and verifiable way of screening newborns, documenting this data in a shared database, analyzing the data, and sharing this information for use in developing policy and conducting further research. CONSA has helped us identify newborns with SCD at an early enough age to initiate them on prophylactic medications, thereby averting early complications associated with the disease and affording children the opportunity to live comfortably and pursue their future goals.
In a further sign of Kenya’s increased focus on SCD, the Ministry of Health has developed a new NBS policy, with plans to bring screening to other counties, prioritizing those regions with the greatest prevalence. With demand for NBS within the country growing, more stakeholders are committing resources and expertise to further implementation.
CONSA is also implementing several initiatives meant to strengthen and scale up NBS across Africa, including sitewide health practitioner training and capacity-building. I have personally seen dozens of health care providers (from nurses to primary doctors) learn more about the management of SCD. Another exciting activity is CONSA’s policy awareness initiative, designed to equip various NBS sites with the skills, tools, and techniques needed to raise awareness among policymakers of the need for improved care and sustainable solutions for children living with SCD.
On a personal note, my work with ASH and CONSA has exposed me to national and international networks of experts and advocates for SCD. I have been able to attend conferences and discuss our experiences in setting up and running an NBS program. Last year, I also had the opportunity to enroll in a six-month clinical hematology and bone marrow transplant fellowship program at the Fortis Memorial Research Institute in Gurgaon, India, widening my clinical and experiential horizons in hematology and particularly on curative therapies for SCD.
In summary, ASH is making a huge difference in the lives of Kenyans living with SCD, as well as educating and supporting health care providers and caregivers. It is an honor to be a part of this initiative, and I look forward to its continued implementation in the years to come.
CONSA is a part of this year’s annual meeting with the presentation of two abstracts. The first abstract addresses issues around capacity building for SCD in sub-Saharan Africa, while the second focuses on the initial results of CONSA in seven African countries. Details are available in the online program.
