Birth Defects COUNT Partner Newsletter

Welcome

A Message from the NCBDDD Director

A healthy, happy life. It may be the greatest wish everyone has for themselves and their loved ones, but for the millions of people affected by birth defects, that wish can be challenging to realize. Like many of you, CDC is working toward a day when every child is born with the best health possible and the potential for a full and productive life.

Birth defects are common, costly and critical. In fact, birth defects are a leading cause of death in the first year of life. And, for affected babies who survive and live with these conditions, birth defects increase the risk for long-term disabilities. Birth defects not only impact babies born with these conditions, they also have an emotional and financial impact on their families and communities.

The U.S. Centers for Disease Control and Prevention (CDC) works to identify causes of birth defects, find opportunities to prevent them, and improve the health of those living with birth defects.

We know that getting enough folic acid before and during the early weeks of pregnancy greatly reduces the risk of serious birth defects of the brain and spine, called neural tube defects. This research finding led to folic acid fortification of enriched cereal grains in the United States; because of this successful public health intervention about 1,000 more babies are born without a neural tube defect each year in the United States. The estimated savings resulting from folic acid fortification in the United States is about $300 million per year.

Building on the success of folic acid fortification in the United States and other countries, CDC’s National Center on Birth Defects and Developmental Disabilities established Birth Defects COUNT (Countries and Organizations United for Neural Tube Defects Prevention), a global initiative to increase folic acid intake among women of reproductive age for the prevention of neural tube defects. Through Birth Defects COUNT, CDC provides the scientific and programmatic expertise to strengthen birth defects surveillance and expand neural tube defects prevention globally with a focus in South-East Asia and Africa. These efforts can have a significant impact on death and lifelong disability worldwide, helping prevent approximately 150,000-210,000 neural tube defects worldwide each year.

Since it began in late 2010, Birth Defects COUNT has achieved a number of successes. Among these accomplishments is the development of components for a comprehensive web-based surveillance toolkit to help countries build and strengthen surveillance capacity and expand the availability of accurate birth defects data worldwide. At the center of this toolkit is a surveillance manual for use primarily by low- and middle-resource countries. The manual has been finalized and will soon be available to countries seeking to develop or strengthen a birth defects surveillance program.

Through the initiative, CDC also provided analytical support to the World Health Organization to help determine whether a simple biomarker – blood folate – can be used to monitor progress in preventing neural tube defects. Finally, Birth Defects COUNT supported the establishment of a South-East Asia regional birth defects surveillance network and helped facilitate national-level birth defects prevention planning meetings in Sri Lanka, Thailand, Bangladesh, Indonesia, Nepal, and Myanmar.

With your continued support and partnership, we can advance the efforts of Birth Defects COUNT so that we may provide a voice and hope for millions of children, adults, families and communities around the world.

Program Highlight

Working together to help strengthen Kenya’s capacity for birth defects prevention: A great collaborative start

By Alejandro Azofeifa and Diana Valencia

A Call for Assistance

In early 2012, Dr. Leland Albright, a pediatric neurosurgeon at Kijabe Hospital in Kijabe, Kenya, alerted CDC to what appeared to be a rising number of patients presenting to the hospital with neural tube defects (serious birth defects of the brain and spine). He engaged with CDC to help better assess whether the prevalence was actually increasing or if there was simply an increased number of referrals to the hospital from throughout Kenya. He was also interested in knowing whether genetic, nutritional or social factors might be contributing to this increase.

When we were learned of the situation in Kijabe, we responded with genuine enthusiasm. As public health professionals with CDC’s National Center on Birth Defects and Developmental Disabilities, we are committed to helping ensure that women around the world can have healthier pregnancies and healthier babies. Birth defects prevention is our passion!

After speaking with Dr. Albright, we believed that assessing the prevalence of neural tube defects in Kijabe Hospital would be a good first step toward addressing some of Dr. Albright’s questions. Conversations with Dr. Albright and other Kenyan health officials resulted in developing a Field Epidemiology and Laboratory Training Program (FELTP) project to determine the prevalence of neural tube defects among babies born at Kijabe Hospital. FELTP is a program offered by CDC to help countries develop and implement dynamic public health strategies to address health issues.

Taking this first step was crucial. Kenya did not have a systematic way to estimate the prevalence of neural tube defects, making it difficult to compare the numbers of babies with neural tube defects seen at Kijabe Hospital with those at other hospitals in Kenya. However, Kijabe Hospital had maintained an administrative database for several years with information on birth defects for those seen by Dr. Albright. This database served as a starting point for FELTP staff working on the project to determine the number of babies with neural tube defects that presented in Kijabe Hospital. In September 2012, we had the opportunity to work with FELTP staff on a report documenting the prevalence of babies born with neural tube defects in Kijabe Hospital, which was presented to country health officials.

Following the presentation, the officials were surprised by the findings and expressed concern. Several officials noted the importance of this information for Kenya and described the data as “eye-opening” and neural tube defects as “a critical public health matter.” This underscores how the need for information, like the data collected at Kijabe Hospital and through systematic surveillance, and a comprehensive birth defects surveillance system can help health officials in Kenya monitor and address the prevalence of babies with neural tube defects.

Looking Toward the Future

Kenya recently mandated the fortification of food staples with several micronutrients including folic acid, providing an opportunity for country health officials to compare rates of neural tube defects (or the frequency with which they occur) before and after fortification. We are excited about the opportunities for birth defects prevention in Kenya. We continue to collaborate with country health officials in their efforts to implement birth defects surveillance through local hospitals. We also maintain a close connection with FELTP and will support a FELTP fellow who will help implement birth defects surveillance in Kenya.

Reflecting on this experience, we appreciate the opportunity to work with our public health colleagues in Kenya on such an important project. It was a pleasure to work alongside FELTP and other public health staff in Kenya, and with dedicated doctors like Dr. Albright. Their combined efforts on this project left a positive impression on country health officials, CDC staff, and the people they serve.

Partner Spotlight

Introducing the International Federation for Spina Bifida and Hydrocephalus: Spina bifida is our public health concern

Created in 1979, the International Federation for Spina Bifida and Hydrocephalus (IF), a non-governmental organization based in Brussels, is the global umbrella organization for 50 national and regional spina bifida and hydrocephalus organizations. IF works to improve the quality of life for people with spina bifida and hydrocephalus and prevent the occurrence of spina bifida.

In recent years, the rates of neural tube defects have decreased in some countries; however, there is still much work to be done. Expanding mandatory food fortification with folic acid to countries where neural tube defects remain prevalent is an important goal for IF and among their core activities. To this end, IF fully supports CDC’s Birth Defects COUNT global initiative to reduce death and lifelong disabilities resulting from neural tube defects.

Primary Prevention and Access to Care

“I was aware that folic acid reduced chances of conceiving a baby with spina bifida from the books I read when planning a pregnancy. But my third pregnancy was unplanned and Hattie was born with spina bifida…I would recommend that governments promote folic acid use to all women of childbearing age, whether they are planning a family or not!” – Zoe Burnay

In 2005, IF members adopted the IF Policy Statement on Prevention of Neural Tube Defects and Mandatory Food Fortification calling for action to

• Promote the health benefits of folic acid,
• Ratify a policy calling on all countries to fortify staple foods with folic acid, and
• Encourage further research on the prevention of spina bifida and hydrocephalus.

According to Lieven Bauwens, IF Secretary General, “We are interested in the development and implementation of global prevention policies, fortification, supplementation, or any other strategy. This is a good way of using our members’ expertise to explain to their governments why and how the WHO standard on prevention of neural tube defects should be implemented.”

IF values collaboration with partners and maintains a strong network with experts in spina bifida and hydrocephalus worldwide. In 2009, IF engaged in a new partnership with Bayer HealthCare Pharmaceuticals to raise awareness of spina bifida and hydrocephalus in Europe. The alliance produced two joint reports on the prevention of neural tube defects, including spina bifida. Together, IF and Bayer continue to collect and disseminate critical information about the prevention of neural tube defects globally.

Prevention measures for the next generation should not diminish efforts towards treatment, care, and support for those with spina bifida and hydrocephalus. Despite ongoing medical advances, many children and adults living with spina bifida and hydrocephalus continue to experience barriers in accessing comprehensive multidisciplinary treatment and care services. IF is concerned that individuals living with these conditions also experience stigma and discrimination, and therefore aims to increase inclusion in education and the workforce, as well as improve access to lifelong medical treatment and care.

Read more: ifglobal.org

News & Events

Partners engaging for spina bifida and hydrocephalus prevention and care: Collaborating to improve child health globally

“Game-changer”, “Hope”, “Collaboration”, “Commitment”, “Inspired”. These are just some of the terms used by participants of the Spina Bifida and Hydrocephalus Partner Engagement Meeting held in Boston, Massachusetts on April 11, 2014 when they were asked to sum up the day-long meeting.  The meeting, organized by Boston Children’s Hospital, the International Federation for Spina Bifida and Hydrocephalus, and CDC’s National Center on Birth Defects and Developmental Disabilities, brought together representatives from 21 different organizations in academia, health services, private and public sectors, to explore synergies to strengthen global efforts for the primary prevention of spina bifida, as well as the care of persons impacted by spina bifida and hydrocephalus.

Many organizations around the world focus efforts on both primary prevention of spina bifida and hydrocephalus, as well as secondary care for those children and adults living with these conditions. This meeting was a collective discussion among these organizations to advance spina bifida and hydrocephalus prevention and care together. Central to the discussion were the challenges related to sustaining individual organizational efforts and remaining visible in a time of competing priorities and limited budgets.

The theme of the meeting was “Better Together”. This theme underscored how strategic partnerships can help increase visibility of an issue, allow for sharing of expertise and strategies, mobilize resources, and decrease duplication of efforts. Coming together to address challenges can help advance research, and strengthen and move forward prevention and care efforts.

During the meeting, participants provided overviews of their work, and gave examples of successful partnerships they had cultivated. They also engaged in an active dialogue seeking commitment, identifying core values, and exploring a shared purpose and formation of a consortium. In the end, three primary outcomes were realized: (1) the group reached a consensus to move forward with developing a consortium to advance global prevention, care and research efforts for spina bifida and hydrocephalus; (2) participants identified collaboration as an essential core value for a consortium; and (3) the group affirmed the need to establish a shared purpose to help focus and direct efforts of a consortium. Additional partners will be solicited to engage in this emerging effort, and a steering group will be formed to help advance development of a consortium.

This meeting launched what promises to be an important first step in a much needed collaborative effort to improve child health globally.

For more information about the Spina Bifida and Hydrocephalus Partner Engagement Meeting, or to learn more about how to become involved in this effort, please contact Ms. Aliki P. Weakland at AWeakland@cdc.gov.

Prevention and control of birth defects in South-East Asia Region: Strategic Framework (2013-2017) is finalized

The World Health Organization/South-East Asia Region (WHO/SEARO) has published a regional strategic framework for the prevention and control of birth defects. This is the first framework in the region designed to significantly reduce preventable birth defects within the region. Through CDC’s ongoing collaboration with WHO/SEARO, CDC was fortunate to support the work of WHO and Member States in the development of this framework and continue to work together to help move prevention and surveillance of birth defects forward in the region. Click here to access the Strategic Framework.

Renowned scientists discuss historic folic acid research and birth defects prevention

Folic acid fortification was recently named one of the Ten Great Public Health Achievements in the United States (2001-2010). Mandatory folic acid fortification of cereal grain products labeled as enriched in the United States beginning in 1998 contributed to a 36 percent reduction in neural tube defects from 1996 to 2006. Additionally, folic acid fortification prevented an estimated 10,000 neural tube defects in the past decade, resulting in a savings of more than $4 billion in direct costs. CDC’s research and leadership in the field of birth defects prevention were critical to this public health success story. Watch as leading birth defects prevention scientists discuss the research that led to folic acid fortification in the United States and its implications for global fortification efforts.

Key Resources

Birth Defects COUNT’s surveillance toolkit increases access to information needed to strengthen birth defects surveillance globally

In October 2011, NCBDDD and partners formed a birth defects surveillance workgroup in response to growing needs for birth defects surveillance technical assistance related to Birth Defects COUNT and other global birth defects prevention activities. The workgroup identified the need for a toolkit to strengthen a country’s ability to conduct birth defects surveillance and provide a strategy for countries to obtain reliable data on many birth defects, particularly neural tube defects. Central to the toolkit is a birth defects surveillance manual for use by low- and middle-resource countries to develop or expand birth defects surveillance. The manual and complete surveillance toolkit will soon be available electronically, and will also serve as the foundation for ongoing birth defects surveillance trainings and workshops. For more information, contact Alina Flores.