Are we already at the end of 2019?! While to many of us it felt like the year flew by, APHL staff, members and partners accomplished a LOT in an effort to protect the public’s health. In this episode, Scott Becker, APHL’s executive director, reviews some of the highlights of the year along with Gynene Sullivan, APHL’s manager of communications, who is finalizing our Annual Report.
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
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.”
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.”
APHL has a long history of involvement in Sierra Leone where we’ve provided technical assistance to strengthen the nation’s laboratory system for over a decade. Following the 2014-2015 Ebola outbreak, we were invited back to build laboratory response capability for Ebola and other highly infectious diseases.
We found there was a lot to be done: a strategic plan for the laboratory system, renovation of the central lab, training and mentoring of lab staff, reducing turnaround time for Ebola testing, and much more.
With the engagement completed earlier this year, APHL Executive Director Scott Becker and Manager of Global Health Sherrie Staley share insights from APHL’s on-the-ground experience, which include the value of a healthy ram.
Nearly two years ago, a malaria researcher named Dr. Abel Olusola “Sola” Idowu left Lagos, Nigeria and emerged into the frosty, winter air of Milwaukee, Wisconsin. Milwaukee, a quintessential Midwestern American city, may not be associated in many people’s minds with global health, but this Fulbright Scholar knew better: this journey was the opportunity of a lifetime.
Sola had pursued a Fulbright Visiting Researcher scholarship to continue his PhD research, which focused on how Plasmodium falciparum develop resistance to antimalarial drugs and the public health implications of such resistance. Not only would he be exposed to new ideas and techniques, but it was also “an opportunity for cultural exchange that would promote understanding among people of different nations,” Sola recalls. He chose Milwaukee for the opportunity to access the research facilities and learn from the staff at the University of Wisconsin-Milwaukee (UWM) and City of Milwaukee Health Department Laboratory (MHDL), which he knew would help expand his technical capabilities and enhance the quality of his research.
“My research at MHDL enabled me to learn new skills, especially in molecular techniques, and to appreciate processes in a public health laboratory with the kind assistance of the wonderful staff of the laboratory,” Sola said. “The state-of-the-art facilities at MHDL and the UWM College of Health Sciences were an eye opener for me. Overall, it was a rewarding experience that enabled me to accomplish my doctoral research objectives.” It also helped him build a network with other researchers, as his research collaborations extended beyond Milwaukee to the Malaria Branch of the US Centers for Disease Control and Prevention (CDC) in Atlanta and the Wadsworth Center, the New York State Department of Health’s laboratory.
As he had foreseen, though, his research findings weren’t the only lessons he took away from his time in the US: Sola formed new relationships, both professional and personal, and experienced firsts such as surviving a Wisconsin winter, eating new American cuisine, volunteering at a local food pantry and Habitat for Humanity, and visiting historic sites in New York, Philadelphia, Milwaukee and Chicago.
“I returned to my country with fond memories of my time in the US and look forward to (the) future opportunity to visit again,” Sola said.
Building a Culture That Grows More than Pathogens
Supporting research and experiences like Sola’s is part of MHDL’s larger, ongoing efforts to develop a strong laboratory workforce—both locally and globally—and cultivate a culture that encourages staff to work beyond the laboratory bench.
Over the last five years, MHDL has hosted internships and research rotations for over 60 local students, and, in addition to countless student tours, the laboratory’s leadership and staff routinely participate in career fairs, academic and community outreach events. MHDL has also hosted several international professional and student groups, including Nigerian public health professionals participating in the US State Department’s International Visitor Leadership Program, students from Kashiwa High School in Japan, and public health laboratory professionals from India and the Botswana Ministry of Health. The lab also hosted another University of Lagos PhD student, Dr. Nwamaka Igbokwe, who researched E. coli and antimicrobial susceptibility testing in drinking water at UW-Milwaukee and MHDL in 2012.
Laboratory Director Dr. Sanjib Bhattacharyya leads his staff by example through his involvement in global lab efforts, particularly around infectious diseases. Bhattacharyya, a current member of APHL’s Global Health Committee and the Milwaukee Global Health Consortium (MGHC) Advisory Committee, has served as CDC’s Influenza real-time PCR trainer, provided coaching and mentoring to public health laboratory professionals, Ministry of Health in Lesotho and Uganda, participated in APHL’s National Center for Public Health Lab Leadership coaching program. He has also represented APHL at the World Summit on Antivirals in Kunming, China, lectured on Influenza in India and gastrointestinal pathogen testing in Monaco. Closer to home, Bhattacharyya, an adjunct faculty at UWM, is engaged in dialogs with Zilber School of Public Health to develop public health laboratory leadership and management curriculum to integrate with school’s global health programs.
MHDL leadership and passionate laboratory staff work together to engage their local and global community to build strong public health laboratories and protect public health.
In the US, nearly all children born with sickle cell disease survive into adulthood. Across the globe in sub-Saharan Africa, more than half of babies born with the genetic condition don’t survive until their fifth birthdays.
A major reason for the stark disparity is the region’s lack of newborn screening capacity, which allows for early detection and medical intervention. Here in the US, state public health laboratories automatically test babies for a number of genetic and metabolic disorders, including sickle cell disease, as part of their universal newborn screening programs. In sub-Saharan Africa, however, diagnostic and treatment capacity is severely limited, despite the region being home to more than 75% of the disease’s global burden.
Researchers estimate that about 240,000 babies are born with sickle cell disease in sub-Saharan Africa every year, with studies estimating that at least half of such children die before age five (though research finds the under-five mortality rate related to sickle cell disease in the region could be as high as 90%). Globally, the number of people with sickle cell disease is expected to grow by 30% by 2050. Early detection and diagnosis is critical to pushing that child mortality rate down, but to date, no country in sub-Saharan Africa has been able to establish universal newborn screening for any disease, including sickle cell disease.
Sickle cell disease is an inherited red blood cell disorder in which abnormally shaped red blood cells block the adequate flow of blood and oxygen throughout the body. The disease causes a number of adverse and debilitating effects, including anemia, chronic pain, delayed growth, vision problems and more frequent infections. The disease is manageable with access to relatively easy, low-cost interventions, such as folic acid supplementation, vaccines and antibiotics, pain treatment, dietary changes and high fluid intake.
“This is the same disease we screen for here in the US and we know that if we’re able to detect it early enough and provide the right treatment — prophylaxis penicillin and folic acid — it increases their chances of having a normal life enormously,” says Jelili Ojodu, MPH, director of newborn screening and genetics at APHL. “Sickle cell disease doesn’t have to be a death sentence, as it is now in these countries.”
This summer, the Sickle Cell Disease Coalition — APHL is a member of its steering committee — released a new public service announcement directing viewers to a library of global resources on sickle cell disease screening sites and treatment centers in African regions. Also unveiled was an eight-minute documentary from the American Society of Hematology on sickle cell disease newborn screening efforts now underway in Ghana and how families impacted by sickle cell disease can access appropriate care.
For more than a decade, APHL has been working with providers and health officials in sub-Saharan Africa to institute newborn screening for sickle cell disease, providing technical assistance and guidance on testing methodologies, facilitating relationships with laboratory vendors and in some cases, providing hands-on training in validating lab instruments. The goal, Ojodu said, is to help countries take the first steps in the slow scale-up toward universal newborn screening and foster small pilot projects that expand the evidence base and justification for further investment. For example, in Ghana, where sickle cell disease is endemic, APHL partnered with the Centers for Disease Control and Prevention and the Sickle Cell Foundation of Ghana to offer technical assistance on a variety of related screening activities, such as needs assessments, genetic counseling and educating providers and parents. The initiative, launched in 2011, began with a survey of community needs, which revealed a gap in the availability of genetic counselors who specialize in sickle cell disease.
In turn, APHL led a 2013 workshop on developing a sickle cell disease counselor training and certification program in Ghana, where participants helped tailor a culturally competent training program specific to the needs of Ghana’s communities. Then in 2015, APHL put together a curriculum and trained the first 15 counselors using the new Genetic Education and Counseling for Sickle Cell Conditions in Ghana. A second training workshop took place in Ghana in the summer of 2016.
In all, Ojodu said, APHL has worked with providers in about a half-dozen African nations to improve sickle cell disease outcomes and newborn screening, including Mali, Kenya, Nigeria, Liberia, Uganda and Tanzania. The work, he said, has shown that newborn sickle cell disease screening and counseling in sub-Saharan Africa is possible — the real sticking point is securing the funding and support to shift from small pilots at hospitals and universities to population-wide screening. (He added that most sickle cell disease screening in sub-Saharan Africa is happening in hospital labs, which he said might be the preferred setting for such newborn screening in the region, as public health agencies there must focus their limited resources on considerable communicable disease threats.)
In Ghana, Ojodu noted, providers use the same technology to screen for sickle cell disease as labs do in the US, which underscores the adaptability of current sickle cell disease screening techniques to a variety of settings.
“If we can do it here, they can do it there,” Ojodu said. “Of course, it will take time and coordinated efforts. It’s really a slow build-up of justifying that No. 1, this saves lives, and No. 2, it can be done.”
Venée Tubman, MD, MMSc, a member of the African Newborn Screening and Early Intervention Consortium, which came out of the American Society of Hematology’s Sickle Cell Disease Working Group on Global Issues, noted that a number of attempts have been made to start newborn screening programs in sub-Saharan African, but also reported that no country has yet succeeded in adopting a universal screening effort. She noted that based on progress in sickle cell disease survival rates in the US — where about 96% of babies with sickle cell disease now survive into adulthood — it’s reasonable to believe that similar improvements can be achieved for children in sub-Saharan Africa with the expansion of early detection and treatment. For instance, in the US, CDC reports that with the introduction of pneumococcal disease vaccination, sickle cell disease related deaths among black children younger than four dropped by 42% between 1999 and 2002.
“That fact that we were able to implement some basic measures and increase survivability pretty dramatically leads me to believe that, yes, most of these deaths are preventable,” said Tubman, an assistant professor in pediatrics at Baylor College of Medicine.
She added that the existence of the consortium and the Sickle Cell Disease Coalition speaks to the progress being made to boost early detection and intervention in sub-Saharan Africa.
“Even beginning to strategize and organize around this problem — the infrastructure limitations and the myth and perceptions around sickle cell — is a sign of progress,” Tubman said. “We have a long way to go, but at least we’re on the road.”
Ojodu noted that with the elimination of CDC funding for global newborn screening development, APHL is looking for new funding partners to continue its work abroad.
“This is possible,” he said, referring to improving sickle cell disease survivability rates in sub-Saharan Africa. “We can affect change there just like we did in the US.”
*Header photo is a screenshot from the Sickle Cell Disease Coalition’s “Global Sickle Cell Disease Public Service Announcement.”
Ed note: Today we welcome Junaid Nabi back to the blog. For more about Junaid, please see the bottom of this post. The following is adapted from a speech that was delivered as one of
By Dr. Jenniffer Mabuka In 2014, West Africa encountered its worst recorded outbreak of Ebola with over 11,000 reported deaths. The memory of this crisis hadn’t faded yet when Ebola reared its ugly head
By Benjamin Waldmann Selvarasu, a coconut farmer in Erode, India, met his fate with a bite from a Russell’s viper. With his life hanging in the balance, it wasn’t until he reached a third
Optimism, but Obstacles Abound for the Future of Malaria Control post-info PLOS Medicine Specialty Consulting Editor Lorenz von Seidlein reports that highlights from the Pan African Malaria Conference and the Malaria Summit portend
Ed note: Today we welcome Junaid Nabi back to the blog. For more about Junaid, please see the bottom of this post. The following is adapted from a speech that was delivered as one of
By Dr. Jenniffer Mabuka In 2014, West Africa encountered its worst recorded outbreak of Ebola with over 11,000 reported deaths. The memory of this crisis hadn’t faded yet when Ebola reared its ugly head
By Benjamin Waldmann Selvarasu, a coconut farmer in Erode, India, met his fate with a bite from a Russell’s viper. With his life hanging in the balance, it wasn’t until he reached a third
Optimism, but Obstacles Abound for the Future of Malaria Control post-info PLOS Medicine Specialty Consulting Editor Lorenz von Seidlein reports that highlights from the Pan African Malaria Conference and the Malaria Summit portend