Outside of the US and other resource-rich nations, few countries have the capital, infrastructure and human resources required to sustain a newborn screening program. Despite these barriers, APHL staff and members have worked diligently to increase access to newborn screening worldwide. In recognition of these efforts, APHL Newborn Screening and Genetics Director Jelili Ojodu received the Gerard Loeber Award for Contributions to Newborn Screening Expansion in Developing Countries at the tenth in September. The award recognizes years of work by Ojodu and his team at APHL to make newborn screening the norm—not the exception—for babies around the world.
While much remains to be done to achieve this goal, as more countries consider the impact of non-communicable diseases on their populations, interest in newborn screening is growing. In the last year alone, APHL has received requests for technical assistance to develop or expand newborn screening programs from Brazil, Canada, Ghana, Jordan, India, Mexico, Nepal, Nigeria and Tanzania.
Such interest has led APHL to expand partnerships with nonprofits and governmental agencies to develop newborn screening guidance and resources. For example, APHL has collaborated with the Global Issues Working Group of the Sickle Cell Disease Coalition to develop a Global Resource Library with information on sickle cell disease activities worldwide and a public service announcement. In addition, the association worked with other sickle cell disease advocates to create tools to assess a nation’s needs and readiness to develop a sickle cell disease program. APHL is also currently collaborating with the US Centers for Disease Control and Prevention (CDC), the CDC Foundation, the Pediatric Endocrine Society and Vanderbilt University Medical Center to finalize a document detailing the capabilities required to launch a newborn screening program.
On the ground, APHL continues to extend its reach within Africa, South America, Europe and Southeast Asia. It supports development of implementation plans and strategies, offers related training and shares recent developments in US newborn screening. For example, APHL recently participated in the first Pan-African Workshop on Newborn Screening in Rabat, Morocco, where delegates reported on the status of newborn screening in their countries, and APHL discussed developing a newborn screening case registry to coordinate patient follow up, and infrastructure required for electronic data exchange of newborn screening results.
The association has also been collaborating with partners in India as that country gears up to implement universal newborn screening—a daunting undertaking in a country where 1.5 million babies are born each month. APHL recently teamed up with PerkinElmer to support newborn screening and genetics training for a fellow from Jaipur, whom APHL staff later visited to assess readiness for newborn screening new disorder implementation and technical assistance in that state. Currently, APHL is developing case studies about the benefits of newborn screening to educate physicians in Jaipur, and, with the International Neonatology Association (ISNS), is coordinating with local NBS leaders to explore opportunities to initiate an ISNS chapter in India.
Despite the challenges of strengthening newborn screening programs in countries where the service is now virtually unknown, Ojodu and his team foresee tremendous benefits to public health as well as national income and stability. Says Ojodu: “When we reduce or eliminate the symptoms of newborn screening disorders, kids are healthier, healthcare costs go down and mothers can take on income-generating work. This raises family income and, when multiplied by millions of families, also raises national income. We get a cascade of benefits from a single investment in public health.”