Consolidating newborn screening efforts in the Asia Pacific region

Abstract

Many of the countries in the Asia Pacific Region, particularly those with depressed and developing economies, are just initiating newborn screening programs for selected metabolic and other congenital disorders. The cultural, geographic, language, and economic differences that exist throughout the region add to the challenges of developing sustainable newborn screening systems. There are currently more developing programs than developed programs within the region. Newborn screening activities in the Asia Pacific Region are particularly important since births there account for approximately half of the world’s births. To date, there have been two workshops to facilitate formation of the Asia Pacific Newborn Screening Collaboratives. The 1st Workshop on Consolidating Newborn Screening Efforts in the Asia Pacific Region occurred in Cebu, Philippines, on March 30–April 1, 2008, as a satellite meeting to the 7th Asia Pacific Conference on Human Genetics. The second workshop was held on June 4–5, 2010, in Manila, Philippines. Workshop participants included key policy-makers, service providers, researchers, and consumer advocates from 11 countries with 50% or less newborn screening coverage. Expert lectures included experiences in the United States and the Netherlands, international quality assurance activities and ongoing and potential research activities. Additional meeting support was provided by the U.S. National Institutes of Health, the Centers for Disease Control and Prevention, the U.S. National Newborn Screening and Genetics Resource Center, the International Society for Neonatal Screening, and the March of Dimes. As part of both meeting activities, participants shared individual experiences in program implementation with formal updates of screening information for each country. This report reviews the activities and country reports from two Workshops on Consolidating Newborn Screening Efforts in the Asia Pacific Region with emphasis on the second workshop. It also updates the literature on screening activities and implementation/expansion challenges in the participating countries.

Appendices

Appendix 1

Cebu Declaration

01 April 2008

Cebu, Philippines

Preamble

In countries with depressed and developing economies, such as in Asia, newborn screening and infant screening is either not yet a priority or just emerging as a priority. A group of 11 countries (Bangladesh, China, India, Indonesia, Laos, Mongolia, Pakistan, Palau, Philippines, Sri Lanka, Vietnam) participated in a workshop called “Consolidating Newborn Screening Efforts in the Asia Pacific.” The participants of this meeting recognize that children’s health is a high priority for our countries. Newborn screening coverage in Asia and the Asia Pacific region remains low at 10% of babies born within the region. As an output of this workshop, the participants wish to put forward this Cebu Declaration.

Declaration

The international community has achieved important advances in infant survival and the reduction of neonatal mortality. As a consequence, in view of the United Nation’s Convention on the Rights of the Child (1989), governments must now focus increased attention on assuring our children’s optimal development and to put in place policies to ensure that tomorrow’s adults are as free as possible from disability that will limit achieving their potential. This is facilitated by early screening for congenital genetic disorders that are responsible for major disability; if not treated early, the costs of treatment of preventable disability will be prohibitive for society and the lives of children and their families will be tragically and unnecessarily limited. Systematic newborn screening for these genetic disorders is, thus, a necessity for public health programs based on the resources available.

Newborn screening is an important tool in the prevention of disease and disability in our children and thus should be a key part of a comprehensive public health system in all of our countries. Each country should prioritize the panel of screening disorders and system of care that is appropriate to their situation. Based on the meeting’s deliberations, the following recommendations have received high priority:

• Encourage all countries to develop policies and provide necessary support to establish a systematic national newborn screening program within the context of a global national policy for children’s health that will provide access to all newborn infants in these countries and provide follow-up services. Such services should integrate both public and private health care delivery systems.

• Screen nationally for at least one condition in all newborns and develop a national screening model program that takes into account all aspects for post-testing care.

• Establish national research priorities around newborn screening, through culturally relevant and ethical strategies.

• Reduce disability and death by assuring that the children identified as having screened positive for a genetic disorder have the opportunity to a good quality of life through access to medical treatment including behavioral, physical therapeutic interventions as well as assistive technology in order to preserve healthy development and improve autonomy and independence.

• Develop population studies to determine the incidence of genetic disorders in the region and consider linking to national databases with standardized measurements. (Clearly, population genetic data needs to be accumulated country by country as it is anticipated that each country will have unique disorders related to their own population.)

• Begin regionalization and cooperation among countries by sharing of expertise, information, and other resources.

• Develop training programs that focus on role-specific activities that build the interdisciplinary teams needed for newborn screening systems of care.

• Stimulate regional research capacity that addresses the specific conditions of priority to Asia and the Asia Pacific.

In view of all of the above recommendations, the attendees recognize the need to establish collaborative, cooperative networking to facilitate the development of newborn screening systems for all nations;

In order to develop such a collaborative network it would be of value to:

• Hold periodic (e.g., every 18 months) meetings to assess country advances.

• Develop smaller focused meetings on issues of particular importance (e.g., training).

• Establish structures for increased communication across the region including a regional website and biennial regional meetings.

• Establish an advisory committee to set up an agenda for addressing the recommendations identified above.

• Establish working groups that can implement identified priorities.

• Involve other professional groups interested in quality child health care.

Appendix 2

Manila Declaration

05 June 2010

Manila, Philippines

The participants of the workshop entitled “2nd Workshop on Consolidating Newborn Screening Efforts in the Asia Pacific Region” (composed of representatives from Bangladesh, China, India, Indonesia, Laos, Mongolia, Pakistan, Philippines, Sri Lanka, and Vietnam with expert assistance from the United States) held on June 4–5, 2010 in Manila, Philippines, reaffirm their commitment to the principles and provisions listed in the Cebu Declaration (Appendix 1).

In addition, the group resolves to continue their activities in implementing and refining newborn screening in the Asia Pacific Region through the following actions:

• At the Ministry of Health level, to:

• Develop national policies on newborn screening.

• Develop health financing schemes for newborn screening.

• Partner with local and international funding agencies [USAID (United States Agency for International Development), WHO (World Health Organization), UNICEF (United National International Children’s Emergency Fund — now called the UN Children’s Fund), UNFPA (United Nations Fund for Population Activities — now called the UN Population Fund), JICA (Japanese International Cooperation Agency), etc.].

• Integrate newborn screening with existing child health programs [IYCF (WHO Global Bank on Infant and Young Child Feeding), EPI (WHO Expanded Program on Immunization), etc.].

• At the country level, to:

• Involve policy-makers in activities related to newborn screening.

• Communicate with various stakeholders, i.e., policy-makers, non-government organizations (NGOs), newborn screening product vendors, parents.

• Promote advocacy on newborn screening at all levels.

• Integrate newborn screening training into undergraduate and postgraduate curricula.

• Create a central newborn screening database in each country.

• Organize regular monitoring and review of the newborn screening program.

• Participate in external newborn screening laboratory proficiency testing programs.

• Network with other countries and experts having similar newborn screening interests.

• Begin to address the issues of storage and use of residual dried blood spots.

• At the regional level, to:

• Create a “Working Group on Consolidating Newborn Screening Efforts in the Asia Pacific Region” within the Asia Pacific Society on Human Genetics (APSHG) with every country represented by at least one newborn screening manager and one Ministry of Health representative.

• Encourage ASEAN (Association of Southeast Asian Nations) and SAARC (Southeast Asian Association for Regional Cooperation) to prioritize newborn screening in their government health agenda.

• Motivate existing regional professional societies and NGOs to promote newborn screening: ISNS (International Society for Neonatal Screening), APSHG, pediatric societies, obstetric societies, perinatal and neonatal societies, Asia Pacific endocrine societies, nuclear medicine societies, Asian Association of Pediatric Societies, etc.

Conference participants recognize and embrace the need to continue collaborative, cooperative networking to facilitate the development of a quality newborn screening system in all nations. In order to facilitate continuation of such a collaborative network, it is of value to:

• Establish structures for increased communication across the region including a regional website and biennial regional meetings.

• Establish a regional advisory committee to set up an agenda for addressing the recommendations identified above