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’ | www.APHLblog.org

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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APHL and Canadian Public Health Laboratory Network Reaffirm Cross-border Partnership with MOU

APHL and Canadian Public Health Laboratory Network Reaffirm Cross-border Partnership with MOU | www.APHLblog.org

Recently APHL and the Canadian Public Health Laboratory Network (CPHLN) signed a new memorandum of understanding (MOU) that reaffirms their long-standing collaboration and updates the specifics of the MOU. Executive Director Scott Becker, MS, and President Joanne Bartkus, PhD, traveled to the National Microbiology Laboratory (NML) in Winnipeg, MB, to formalize the agreement with the Scientific Director General of the NML and federal co-chair of CPHLN Matthew W. Gilmour, PhD., and current provincial co-chair Paul Van Caeseele, MD.

To hear more about this cross-border partnership, APHL spoke with Theodore Kuschak, PhD, Director, Office of Networks and Resilience Development, National Microbiology Laboratory, and CPHLN secretariat member, and Graham Tipples, PhD, Medical-Scientific Director of the Provincial Public Health Laboratory in Alberta, and past provincial co-chair of CPHLN.

What prompted APHL and CPHLN to establish the first Canada-US MOU in 2004?

Kuschak: I was hired in 2003 to lead the CPHLN and met Scott Becker at a meeting in Toronto a week later. We started talking and came up with the idea for an MOU as a way to formalize the relationship between our two networks. We’ve maintained an MOU from 2004 to this date, with modifications and re-signing in 2008, 2011 and now in 2018.

Actually, our Canadian laboratory organization precedes 2004, going back all the way to 1947 when provincial lab directors created a Technical Advisory Committee to advise the national lab. This group disintegrated in the late 1990s, but resurfaced as the CPHLN after the 9/11 and anthrax attacks. CPHLN member labs collaborate and assist each other, much as public health labs do in the US. All provincial and federal CPHLN labs operate on an equal footing, which makes the network unique.

How does the MOU benefit CPHLN and its member laboratories?

Kuschak: The MOU enables our provincial labs to break through the governmental hierarchy and interact directly with state public health labs. If a provincial lab director has a particular challenge, he or she can be linked through APHL to a state lab director who is dealing with the same issue. Additionally, the MOU makes it easier to obtain approval for travel and for other collaborative activities to support our partnership.

More broadly, the CPHLN-APHL relationship facilitates collaboration on technical issues, interventions like exchange of information, knowledge, and participation in APHL board of directors meetings, annual meetings, and other activities.

CPHLN also benefits from APHL’s work to develop standards, guidelines and tools to strengthen laboratory practice. For instance, we’ve adapted the Core Functions of Public Health Laboratories and worked with APHL to develop the Laboratory Assessment Tool for use by all public health labs.

How does this cross-border laboratory partnership benefit the public’s health?

Kuschak: It makes such a difference to have long-established personal relationships on both sides of the border.  We can pick up the phone and get answers from each other when we need them. As a result, we can respond more quickly to events – and the faster we respond, the sooner our data is available to guide patient care.

Tipples: The ongoing exchange between the two networks also helps to ensure the consistency of lab diagnostics and surveillance in support of patient care and public health action. This is vital considering the number of people who cross the Canada-US border daily.

How does the APHL/CPHLN collaboration support public health emergency preparedness?

Tipples: It’s often said that emerging diseases know no borders. A disease threat in the US is a threat in Canada as well. We participate in PulseNet and other international disease surveillance systems such as influenza and measles. Occasionally, specimens from Canada go to CDC for analysis if we lack the capability, as occurred very early on during the Zika outbreak.

Kuschak: Our US network partners are always ready to help in an emergency. In 2014 we wanted to know what was happening with Ebola testing in Texas. If we’d contacted the state health laboratory, they would have said, “Who are you?” Instead we called Scott [Becker] and he got back to us within a day with the information we needed.

Here’s another example: Many years ago I was at APHL’s old offices in downtown DC when I got a call from Frank Plummer, who was then the director general of our national lab. Frank explained that there had been an issue with a proficiency panel distributed by a diagnostics company to labs in the US and Canada. The panel included a particularly concerning pathogen strain. I asked, and received approval, to share this news with Scott so that he could alert APHL member labs. I then had to get on the phone to tell our provincial labs to handle the panel with appropriate bio safety precautions. Scott set me up with an office and a phone, and offered to get me anything I needed, including lunch. You can’t beat that kind of support!

Do you foresee opportunities to expand the APHL/CPHLN partnership? 

Tipples: Collaboration between the two networks has expanded already. As a member of APHL’s Training and Workforce Development Committee, I’ve had a chance to assist with development of the new DrPH in Public Health Laboratory Science and Practice program, designed to address the shortage of CLIA laboratory directors. I was also able to pull in the NML’s talented lead bioinformatician to contribute to the development of the bioinformatics component of the curriculum.

And as of 2017, there’s a place reserved for a Canadian in APHL’s Emerging Leader Program. We’re excited to have CPHLN represented in this excellent leadership development program.

Kuschak: Our public health agency has asked for more lab involvement in shaping nation-wide health planning. We’ll be collaborating on development of a national strategy for preparedness and response to viral hemorrhagic fevers, development of a public health genomics strategy for Canada, and other work. As we move forward with this and similar initiatives, you can be sure that we’ll be on the phone once again with our American colleagues.

 

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Lab Culture Ep. 16: Informatics, health equity and bat snuggles

Lab Culture Ep. 16: Informatics, health equity and bat snuggles | www.APHLblog.org

Joanne Bartkus, APHL’s board president and director of the Public Health Laboratory at the Minnesota Department of Health, sat down with Scott Becker, our executive director, and Gynene Sullivan, editor of Lab Matters magazine, to talk about priorities for the year. Their conversation ranged from informatics to health equity to… snuggling with a bat?!

Joanne Bartkus, PhD, D(ABMM)
Director, Public Health Laboratory, Minnesota Department of Health

Scott J. Becker, MS
Executive director, Association Public Health Laboratories​
@ScottJBecker

Links:

Lab Matters

Lab Matters — Android app

Lab Matters — iTunes app

APHL Board of Directors

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APHL Receives $7.5 Million Award to Strengthen Newborn Screening Systems

APHL Receives $7.5 Million Award to Strengthen Newborn Screening Systems | www.APHLblog.org

Congratulations to APHL’s Newborn Screening and Genetics team and the NewSTEPs team! Below is the official announcement of the award.

The Association of Public Health Laboratories (APHL) has been awarded a five-year cooperative agreement of up to $7.5 million by the Genetic Services Branch of the US Health and Human Services Health Resources and Services Administration (HRSA) to maintain and manage the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs). A component of the APHL Newborn Screening and Genetics Program, NewSTEPs provides quality improvement initiatives to strengthen newborn screening systems, a data repository, technical assistance and resources to state newborn screening programs and stakeholders.

“We are honored to receive this award,” said Jelili Ojodu, director of APHL’s Newborn Screening and Genetics Program and director of NewSTEPs. “This funding will allow us to continue provide states with robust and comprehensive tools that will allow them to improve the efficiency of the services they provide to newborn babies.”

Named one of the ten greatest public health achievements of the 20th century, newborn screening saves or improves the lives of more than 12,000 babies annually in the US. For babies who test positive for one of the genetic, metabolic, heart or hearing conditions, newborn screening can prevent serious health problems or even death.

NewSTEPs helps facilitate newborn screening initiatives and improve programmatic outcomes to enhance the quality of the newborn screening system through data driven quality improvements.

 

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This project is 100% supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $1,500,000. The contents are those of the author(s) and do not necessarily represent the official views of, nor endorsement, by HRSA, HHS or the U.S. Government.

The Association of Public Health Laboratories (APHL) works to strengthen laboratory systems serving the public’s health in the US and globally. APHL’s member laboratories protect the public’s health by monitoring and detecting infectious and foodborne diseases, environmental contaminants, terrorist agents, genetic disorders in newborns and other diverse health threats.

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What a Day! Day 3 of the APHL Annual Meeting

What a Day! Day 3 of the APHL Annual Meeting | www.APHLblog.org

Day 3 of the APHL Annual Meeting was a big one! We had several captivating sessions including this year’s Katherine Kelley Distinguished Lecturer, Maryn McKenna, renowned journalist and author. Listen to today’s episode to hear a few attendees share what they took away from the day.

You can listen to our show via the player embedded below or on iTunes, Stitcher or wherever you get your podcasts. Please be sure to subscribe to Lab Culture so you never miss an episode.

The post What a Day! Day 3 of the APHL Annual Meeting appeared first on APHL Lab Blog.

Reporting from the Exhibit Hall: Day 2 of the APHL Annual Meeting

Reporting from the Exhibit Hall: Day 2 of the APHL Annual Meeting | www.APHLblog.org

A huge component of any APHL Annual Meeting is the exhibit hall. This year we were joined by 68 exhibitors, all of whom were sharing new and interesting products, services and technologies with meeting attendees. In today’s episode, we chat with representatives from Roche, Bio-Rad Laboratories and Hologic.

You can listen to our show via the player embedded below or on iTunes, Stitcher or wherever you get your podcasts. Please be sure to subscribe to Lab Culture so you never miss an episode.

Learn more about APHL’s corporate membership and other opportunities.

The post Reporting from the Exhibit Hall: Day 2 of the APHL Annual Meeting appeared first on APHL Lab Blog.

Reporting from the Exhibit Hall: Day 2 of the APHL Annual Meeting

Reporting from the Exhibit Hall: Day 2 of the APHL Annual Meeting | www.APHLblog.org

A huge component of any APHL Annual Meeting is the exhibit hall. This year we were joined by 68 exhibitors, all of whom were sharing new and interesting products, services and technologies with meeting attendees. In today’s episode, we chat with representatives from Roche, Bio-Rad Laboratories and Hologic.

You can listen to our show via the player embedded below or on iTunes, Stitcher or wherever you get your podcasts. Please be sure to subscribe to Lab Culture so you never miss an episode.

Learn more about APHL’s corporate membership and other opportunities.

The post Reporting from the Exhibit Hall: Day 2 of the APHL Annual Meeting appeared first on APHL Lab Blog.

Hello, Pasadena! Day 1 of the APHL Annual Meeting

Hello, Pasadena! Day 1 of the APHL Annual Meeting | www.APHLblog.org

We are in sunny Pasadena, California for the 2018 APHL Annual Meeting! Here is a little look at what we did on the first day. Stay tuned for updates every day through June 5.

You can listen to our show via the player embedded below or on iTunes, Stitcher or wherever you get your podcasts. Please be sure to subscribe to Lab Culture so you never miss an episode.

Join the conversation using #APHL on:

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New Lab Matters: When the water comes, be prepared

New Lab Matters: When the water comes, be prepared | www.APHLblog.org

According to a study by the National Center for Atmospheric Research, the volume of rainfall from storms will rise by as much as 80% in North America by the end of the century. Not only do storms and floods threaten public health laboratory facilities, but receding floodwaters pose serious public health risks. As our feature article shows, the best weapon in a public health laboratory’s arsenal is preparation for inundation…from any source.

Here are just a few of this issue’s highlights:

Subscribe and get Lab Matters delivered to your inbox, or read Lab Matters on your mobile device.

 

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Lab Culture Ep. 12: Bitten by the public health bug — How I found my lab niche

Lab Culture Ep. 12: Bitten by the public health bug -- How I found my lab niche | www.APHLblog.org

The people who work in public health laboratories make a difference in your community daily. In this third episode, members of the Emerging Leader Program cohort 10 sit down with their peers to hear how their public health laboratory careers have made an impact.

You can listen to our show via the player embedded below or on iTunes, Stitcher or wherever you get your podcasts. Please be sure to subscribe to Lab Culture so you never miss an episode.

ELP cohort 10 members featured in this episode:

Interviewees:

  • Degina Booker has been working in the public health lab for 40 years and is now the administrative services director for the Mississippi Public Health Lab.
  • Dr. Burton Wilcke, Jr., now retired, has worked in public health laboratories for over 35 years in Vermont, Michigan and California. Dr. Wilcke remains active in the public health laboratory community as a member of both the APHL Workforce Development Committee  and the Global Health Committee.
  • Dr. Musau WaKabongo, now retired, was the Public Health Laboratory Director at the Placer County Public Health Laboratory  and has worked in several public health laboratories in California for 13 years.
  • Dr. Maria Ishida has been working in public health for 11 years and is now the director of the New York State Food Laboratory.

Are you thinking about a career in a public health laboratory?

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