Newborn Screening in Kenya: Opportunities in the Context of Universal Healthcare

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Kenya has made significant progress in addressing the health needs of children generally and newborns in particular. 

The infant mortality rate has been steadily declining in the last 2 decades. This commendable trend is attributed to increased access to healthcare services in many parts of the country. The country has invested heavily in both primary and secondary healthcare, and this is bearing fruit.

Newborn Screening in Kenya

Many of the strategies and interventions have focused on infectious diseases. In order to maintain the downward trend and improve the overall health of children, there is a need to focus on non-infectious diseases as well.

In this article, we make the case for policymakers, healthcare providers, parents and communities to have conversations about newborn testing.

What is Newborn Screening (NBS)? 

 Newborn Screening is a public health program that aims to identify babies with certain genetic, metabolic, and other disorders shortly after birth so that early intervention can be provided to improve health outcomes. Newborn screening is a state-run healthcare initiative that involves a specific set of laboratory evaluations and point-of-care examinations performed on newborn infants to identify clinically occult but potentially serious disorders that require expedient intervention. The disorders targeted by newborn screening are generally those that, without intervention, would cause significant morbidity, mortality, or intellectual disability.

As study after study has pointed out, the healthcare systems in Africa pay little attention to the critical interface between education and good health

This is particularly true for newborns, who are often overlooked in the provision of healthcare services. In Kenya, for example, there is no national newborn screening program, despite the fact that there are quite a number of congenital disorders of public health importance, the biggest being sickle cell disease.

This is a missed opportunity to improve the health outcomes of affected babies and their families. The WHO Standards for Improving Quality of Maternal and Newborn Care in Health Facilities recommend that all babies receive a comprehensive newborn examination within 24 hours of birth, including screening for common conditions. 

However, in Kenya, this is not always the case. The country has yet to implement a nationwide strategy for screening and managing newborn diseases. Efforts have been made to screen for sickle cell disease in Kisumu County on a pilot basis. These interventions need to go national and cover a wider range of conditions.

Opportunities for NBS in Kenya

The implementation of universal healthcare in Kenya presents an opportunity to improve the provision of healthcare services, including newborn screening. Universal healthcare is a system that provides healthcare services to all citizens regardless of their ability to pay. It is a key component of the Sustainable Development Goals (SDGs) and is seen as a way to improve health outcomes and reduce poverty.

Strengthening the Health System as a Strategy to Achieving Universal Health Coverage in Underprivileged Communities in Africa: A Scoping Review highlights the importance of strengthening the health system as a strategy for achieving universal health coverage in underprivileged communities in Africa. This includes improving the provision of healthcare services, such as newborn screening, to ensure that all citizens have access to quality healthcare services.

Scope of Newborn Screening

The number of disease screening vary between countries and even regions within a country. This depends on the specific disease burden, availability of resources to screen and treat and so on. The number of conditions in some developed countries can be as high as 30.

Generally, the conditions screen falls under these categories

1. Metabolic Conditions

These are disorders that affect the body’s ability to break down and use nutrients. Examples of metabolic disorders that are screened for include galactosemia, maple syrup urine disease, and medium-chain acyl-CoA dehydrogenase (MCAD) deficiency[1][3].

2. Genetic disorders:

These are disorders that are caused by changes in a person’s genes or chromosomes. Examples of genetic disorders that are screened for include cystic fibrosis, sickle cell disease, and phenylketonuria (PKU) [1][3].

3. Endocrine disorders: 

These are disorders that affect the body’s hormone-producing glands. Examples of endocrine disorders that are screened for include congenital hypothyroidism and congenital adrenal hyperplasia[1][3]. 

4. Blood disorders:

These are disorders that affect the blood cells or the proteins in the blood. Examples of blood disorders that are screened for include sickle cell disease (SCD) which is very common in Kenya as well as other hemoglobinopathies[3].

5. Hearing loss:

Newborns are also screened for hearing loss, which can be caused by a variety of factors, including genetics, infections, and exposure to loud noises[1][5].

6. Critical congenital heart defects (CCHDs):

Newborns are also screened for CCHDs, which are structural heart defects that can cause serious health problems if not detected and treated early[1][5].

It is important to note that the specific conditions screened for can vary by country and region, and the list of conditions is subject to change as new screening technologies become available and as the understanding of genetic and metabolic disorders evolves

Benefits of A National NBS Program

The benefits of newborn screening are numerous. 

🩺Early detection and intervention

By starting treatment early, serious problems like illness, intellectual disabilities, or death can often be prevented. Early intervention of congenital conditions leads to improved health outcomes for affected babies. For example, babies with sickle cell disease can be on proper care to prevent the development of complications. Detection of hearing loss can lead to early intervention, such as hearing aids or cochlear implants, which can improve language development and communication skills.

💰💰Lower cost of healthcare

In addition to improving health outcomes, newborn screening can also be cost-effective. Early detection and intervention can prevent costly hospitalisations and other medical interventions later in life. For example, a study in Nigeria found that using a new special health fund to provide universal coverage for a basic maternal and child health benefits package was financially feasible.

👍🏾👍🏾Improved outcomes: 

Through early identification and treatment, newborn screening provides an opportunity for significant reductions in morbidity and mortality while reducing healthcare costs associated with the treatment of lifelong debilitating conditions

👼🏾👼🏾Prevention of intellectual and physical disabilities:

 Many of the diseases included in newborn screenings can be successfully treated, preventing the development of intellectual and physical disabilities

👪Family planning: 

Newborn screening can help families make informed decisions about future pregnancies and family planning

🫅🏾Public health benefits:

Newborn screening is a state-run healthcare initiative that encompasses the process of parental education, infant screening, appropriate follow-up, diagnostic testing, disease management, and continued evaluation. These processes have a positive effect on the wider public health space.

Challenges and Solutions

Limited Resources and Infrastructure

Implementing a national newborn screening program in Kenya will not be without its challenges. One of the biggest challenges is the need for more resources and infrastructure. Kenya must invest in the necessary diagnostic facilities and highly trained personnel to implement a comprehensive newborn screening program. This will require significant financial resources. Stakeholder buy-in and persuasion will be critical in mobilising and advocating for these services.

Lack of awareness on benefits of Newborn screening

Newborn screening has not been in public consciousness in Kenya. healthcare providers and the general public need to know about the importance of newborn screening. Many healthcare providers may not be familiar with the screening tests or the conditions that are screened for. The general public may not understand the importance of early detection and intervention.

To address this challenge, Kenya could launch public awareness campaigns to educate all stakeholders about the importance of newborn screening and the specific conditions that are screened for

Publications such as ours are at the forefront of providing accurate, timely and practical information on this subject

Kenya can also partner with international organizations like the Consortium on Newborn Screening in Africa (CONSA) to provide technical assistance and support. Kenya can also leverage technology to improve screening and follow-up. For example, mobile health (mHealth) technologies can be used to send reminders to healthcare providers and parents about follow-up appointments and test results.

Data collection and reporting: 

Kenya’s health information system faces challenges in collecting and reporting neonatal data, which can make it difficult to track progress and evaluate the effectiveness of NBS programs. Kenya could invest in improving its health information system, including the use of digital health technologies, to improve data collection and reporting

Limited access to follow-up care: 

Even when newborns are identified with a condition through screening, they may face challenges in accessing follow-up care and treatment. To address this challenge, Kenya could invest in improving national referral systems and, use of ubiquitous mobile technology to enhance follow-up to newborns diagnosed with conditions.

Limited political will:

Finally, Kenya may face challenges in garnering political will to prioritize newborn screening and allocate resources to support it. Engagement  with policymakers and stakeholders to build support for newborn screening and highlight the potential benefits of such programs

Newborn Screening: A Call to Action

Newborn screening is an important public health program that can improve the health outcomes of affected babies and their families. Kenya has an opportunity to implement a national newborn screening program in the context of universal healthcare. By doing so, Kenya can improve the provision of healthcare services to newborns and their families, and improve health outcomes. While there are challenges to implementing a comprehensive newborn screening program, there are also solutions. By partnering with international organizations and leveraging technology, Kenya can overcome these challenges and provide quality healthcare services to all citizens.

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