Improving newborn sickle cell screening in Africa: ‘We can affect change there just like we did in the US’

Improving newborn sickle cell screening in Africa: ‘We can affect change there just like we did in the US’ |

by Kim Krisberg

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.”

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The Humility of Expertise

  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

How Can Africa Prevent the Next Haemorrhagic Fever Crisis? Invest in Research and Development

  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

Striking Back: Snakebites Gain Global Attention

  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

  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

APHL: President Trump’s FY 2019 budget request is “disheartening and disappointing”

APHL: President Trump’s FY 2019 budget request is “disheartening and disappointing” |

APHL: President Trump’s FY 2019 budget request is “disheartening and disappointing” |

The Association of Public Health Laboratories (APHL) is very concerned about the decline in federal funding for public health functions such as detection, surveillance and response in the administration’s budget for fiscal year 2019. “It is extremely disheartening and disappointing to see such severe cuts to public health programs at CDC, HRSA, USAID and the Department of State at a time when the services they support are most in need,” said Scott Becker, executive director of APHL. “What is more, these cuts to public health funding come after a historic bipartisan agreement between Congress and the White House to increase federal spending overall for the next two years.”

CDC cuts include:

HRSA cuts include:

Global Health Programs:

  • $1.26 billion cut to Department of State Global Health Programs which includes funding provided to CDC for PEPFAR; and
  • $1.11 billion cut to USAID Global Health Programs.

While the majority of the president’s budget proposal is grim for public health, there were a few areas that are not as dark. APHL was pleased to see that the budget request designates $175 million to CDC to address the growing opioid crisis. Additionally, funding for the Global Disease Detection Program would increase by $51 million and funding for the Public Health Emergency Preparedness program would increase by $4.5 million.

As Scott Becker explained, “The director of the president’s Office of Management and Budget said, ‘the budget is a messaging document.’ In that case, the message to the American people seems to be, ‘Good luck if there is an outbreak or other public health emergency because federal early warning and response programs won’t be there to help you through.’”

APHL will continue work with Congress to assure that funding levels continue at the much-higher amounts provided in previous years. Adequate levels of federal support for state and local laboratory contributions are critical to the nation’s public health security.

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Day Zero: The impact of Cape Town’s water shortage on public health

0000-0002-8715-2896 A story that’s been making the rounds recently is the impending water shortage in Cape Town. Multiple years of droughts have resulted in lower and lower water levels in the reservoirs that supply the

Lab Culture Ep. 7: APHL’s International Team Meeting

Lab Culture Ep. 7: APHL’s International Team Meeting |

The APHL International Team Meeting allows for US-based APHL leadership and global health program staff and consultants working in-country to discuss organizational operations and key programmatic successes and challenges. In most cases, this is the only time during the year that these individuals have an opportunity to meet face-to-face. Participants from Zambia, Zimbabwe, Kenya, Tanzania, Mozambique, Guinea, Sierra Leone and APHL’s US headquarters were all in attendance.

In November, Scott Becker, APHL’s executive director, traveled to Johannesburg, South Africa for the second APHL International Team Meeting. While he was there, he sat down with five members of the APHL international team to discuss their work and what led them to pursue a career in laboratory science.

Interviews include:

  • Levi Vere, Laboratory Quality Monitoring Manager, APHL Zimbabwe
  • Shanette Nixon, Global Health Consultant, APHL
  • Esther Vitto, Laboratory Program Support, APHL Sierra Leone
  • Mohamed Fofanah, Associate Specialist, Administration and Finance, APHL Sierra Leone
  • Rufus Nyaga, LIS Technical Consultant and Project Manager, APHL Kenya
Scott Becker and Levi Vere Scott Becker and Shanette Nixon Scott Becker, Esther Vitto and Mohamed Fofanah Scott Becker and Rufus Nyaga


APHL’s Global Health Program

Mudslides in Sierra Leone

Zimbawe After Mugabe


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Scaling-up viral load testing in Ghana is critical to stopping HIV

Scaling-up viral load testing in Ghana is critical to stopping HIV |

By Robyn Sagal, specialist, Global Health, APHL; Samantha Dittrich, manager, Global Health Security, APHL

When HIV first struck Ghana in 1986, it didn’t adhere to global trends. There was a high prevalence of HIV in females, not males. The spread began in rural areas, not urban centers. Regions with more polygamy had lower rates of HIV, not higher. Over 30 years later, Ghana has made significant headway in slowing new infections, but there continues to be an upward trend that’s deeply concerning.

The top HIV/AIDS experts around the world see substantial evidence that antiretroviral therapy (ART) can be highly successful in suppressing the virus in infected people and decreasing the likelihood of transmission. In fact, evidence shows that when the virus is suppressed to the point of being undetectable, the infected individual has low or no risk of transmitting the virus to others. Given these facts, one key to slowing and eventually halting the transmission of HIV is close monitoring of every infected person’s viral load (testing for the amount of HIV in the blood). Regular and consistent viral load testing can determine whether ART is a success or failure. If ART is successful, viral load testing will indicate viral suppression; if not, as when treatment is inconsistent or the virus has become drug resistant, it will show either no change or an increase in viral load. Viral load testing is critical to determining next steps for individual treatment as well as determining whether the epidemic is progressing or regressing.

In keeping with global HIV response efforts, Ghana is shifting their attention to scaling-up viral load testing per the World Health Organization’s (WHO) “treat all” recommendation. That is, not only should infected and high-risk individuals receive ART, they should also have access to regular viral load testing. Additionally, the country has adopted the UNAIDS 90/90/90 global targets aimed at ensuring that 90% of the people receiving treatment are virally suppressed, with the goal of ending HIV/AIDS by 2030. Scaling-up viral load testing requires increasing laboratory capacity, an undertaking to which Ghana and APHL are committed.

In order to develop the Ghana Laboratory Viral Load Testing Extension plan, APHL has worked closely with CDC-Ghana, the Ghanaian Ministry of Health (MOH), Ghana Health Service (GHS), the National AIDS Control Programme (NACP) and many other partners and stakeholders. This plan outlines a strategy to increase and monitor laboratory capacity for viral load testing. It includes an ambitious, targeted approach that balances achieving global goals of ART treatment monitoring with the limited resources available in the country. The plan accelerates the scale-up of viral load testing by defining national testing targets and a timeframe for achieving them, improving stakeholder collaboration and pooling available resources for better distribution.

In addition, APHL has collaborated with the Centre for Remote Sensing and Geographic Information Services (CERSGIS) to map all 245 ART centers in Ghana. This huge undertaking generated geo-referenced maps for each site, including the latitude and longitude of the ART centers along with other related attributes such as differentiated models of care sites, regional viral load centers, sector viral load centers, functional viral load centers, testing staff capacity, ART equipment at the centers and much more. Visualizing these data at various administrative levels provides national decision makers with a more nuanced understanding of program coverage and priorities for scale-up. By mapping rather than graphing or charting the data, users are better able to recognize important patterns.

As the global health community works to end AIDS by 2030, laboratory testing will continue to be essential for diagnosis, treatment and prevention. APHL’s viral load scale-up activities in Ghana will help those already afflicted by HIV/AIDS to receive effective treatment and  will ultimately decrease the number of new infections in the country.

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Biorisk management is fundamental to global health security

Biorisk management is fundamental to global health security |

By Samantha Dittrich, manager, Global Health Security Agenda, APHL

Over the past 60 years, the number of new diseases per decade has increased nearly fourfold. Since 1980, the number of outbreaks per year has more than tripled. These alarming trends have serious implications for human and animal health as well as severe and lasting economic consequences in affected areas.

In order to address these human health threats, a One Health approach is needed. One Health recognizes that the health of people is connected to the health of animals and the environment, and calls for interdisciplinary collaboration and communication in healthcare and public health practice. With the Global Health Security Agenda (GHSA) in progress, the One Health approach is more important than ever before, and partners must come together to accelerate progress towards a world safe and secure from infectious disease threats.

Inside public health laboratories around the world, scientists handle dangerous pathogens while testing human, animal and environmental specimens for disease. But these pathogens aren’t just confined to laboratory vials and storage tubes: they travel. Often diseases originate in local communities where samples are collected at healthcare facilities that are not equipped to safely and securely handle them. Blood, stool and even animal carcasses may be stored at clinics or emergency operations centers for hours or even days before the samples are transported to laboratories, often on via methods that lack the security requirements for safe sample handling, storage and disposal.

  • Safe handling of pathogens in a laboratory or public health setting by scientists or clinicians is biosafety. Simply put, biosafety is keeping yourself (the public health laboratory professional) safe from laboratory mishaps.
  • Keeping dangerous pathogens secure and out of the hands of someone who may want to use them intentionally to harm others is biosecurity.

Biosafety and biosecurity are fundamental parts of the GHSA. Laboratory biorisk management means instituting a culture of rigorous assessment of the risks posed by infectious agents and toxins and deciding how to mitigate those risks. It involves a range of practices and procedures to ensure the biosecurity, biosafety and biocontainment of those infectious agents and toxins. Threats posed by deliberate release (aka, bioterrorism) and accidental release of infectious agents from a laboratory can happen anytime and anywhere. To mitigate the risks, it is critical that we are prepared to prevent, detect and respond to these threats.

Biorisk management is fundamental to global health security |

As a partner in the GHSA, APHL collaborates with ministries of health worldwide to develop effective national laboratory systems. One of the ways we do that is by providing guidance to our global partners to reduce laboratory biosafety and biosecurity risk. All laboratories – whether they test human, animal or environmental specimens – should develop and maintain biorisk management systems tailored to their unique operations and risks. There is no one-size-fits-all biorisk management system.

Most recently, APHL drafted a Biorisk Management Framework as a tool for partners in Ghana. The Framework offers a comprehensive, systematic approach to laboratory biorisk management. It includes a list of essential elements Ghanaian laboratories can use to assess their operations and better integrate and enhance biosafety and biosecurity programs, whether it is a human, veterinary or environmental laboratory.

In the coming months, APHL will work with partners from public health laboratories, local hospitals, and the veterinary and research communities to discuss a comprehensive, standardized approach to the development of a national Biorisk Management Framework. The goal of this One Health effort is to reduce laboratory biosafety and biosecurity risk.

Preventing the next outbreak will require a One Health approach with close collaboration among the health, animal, agriculture, defense, security, development and other sectors. APHL will be there as a partner, advisor and sounding board for countries working to better manage laboratory biosafety and biosecurity risk.


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