Table 2.
Summation of current challenges and future goals reported by participants at the 2nd Conference on Consolidating Newborn Screening Efforts in the Asia Pacific Region
| Country | Barriers | Future Goals | Successes | |
|---|---|---|---|---|
| Bangladesh | • Health ministry not directly involved | • Prepare a new project proposal for continuation of the program after December 2011 | • Screening is free; increased public awareness | |
| • No priority in national healthcare system | • Integrate health ministry into the next expansion | • Continuing support from government, professionals, NGOs and international organizations | ||
| • Variable social economic pattern in population | • To implement the screening policy formulated by health ministry | • Improved coverage; some hospitals screen >90% of births | ||
| • No funds allocated after December 2011 | • Recall system established; more regular case follow-up | |||
| • Few health professionals directly involved | • New laboratory equipment; program reports published | |||
| • Policy makers agreed in principle to continue the program | ||||
| • 6 new screening labs proposed for national expansion | ||||
| China | • Imbalance in coverage geographically, likely resulting from economic variations | • Create provincial NDBS network across China; start in 2012 and complete by 2015 | • Some provinces are increasing the number of conditions screened beyond government recommendations | |
| • Early treatment and long-term follow-up not optimal | • To improve screening rates with two goals: | • The screening coverage as increased considerably over the past 10 years | ||
| 2012 | 2015 | |||
| • A screening fee exists which may inhibit screening in poorer areas in the West and Central Regions | East – 90% | East – 95% | • There are various research studies ongoing PAH deficiency and BH4 deficiency | |
| • Variability in MS/MS screening availability | Central – 50% | Central – 80% | ||
| West – 40% | West – 60% | |||
| • Upgrade the NDBS information system | ||||
| • Create national/provincial medical training centers | ||||
| • Professional information exchange through meetings, workshops and published studies have improved both diagnostic and research capabilities | ||||
| India | • Millennium Development Goals have not been attained; focus on NDBS not yet established | • To complete the Indian Council for Medical Research (ICMR) project on schedule | • NDBS project for CH and CAH funded by ICMR | |
| • Huge population; significant healthcare variation | • To approach the government for support with incidence and feasibility data following project data analysis | • 5 centers enrolled in CDC NSQAP; part of ICMR project | ||
| • State programs likely necessary before national due to healthcare variations | • To initiate a model screening program in selected states with low infant/neonatal mortality rate | • Consent begun; program currently considered as research | ||
| • Competition with health priorities; infant mortality | • Process to release results by 1 week (maximum of 2 weeks) after samples arrive in the laboratory is in place | |||
| • Political will not established; awareness promotion difficult | • G6PD high incidence confirmed in Delhi (19/1,000 births) | |||
| • Adequate financing not established | • Free NDBS since 2007 in Chandigarh (CH, CAH, G6PD) | |||
| • Screening began n 2008 in Goa [metabolics (MS/MS), CAH, CH, G6PD, CF, and GAL) | ||||
| Indonesia | • No government NDBS policy; lack of knowledge | • Implement NDBS in 10 provinces | • CH pilot studies conducted in two centers | |
| • Mobile population continually seeking better jobs | • Improve provincial capacity and capability | • NDBS Reference Center established under Ministries of Health and National Education | ||
| • High number of home births | • Include NDBS as a health insurance benefit | • Fee mechanism established | ||
| • No program infrastructure exists | • Expand to include newborn hearing screening | |||
| • Inadequate number of health care professionals | ||||
| • Screening fee exists; ~40% cannot afford screen | ||||
| • Limited confirmatory testing; only in urban areas | ||||
| Laos | • No local screening laboratory; using Germany | • Establish NDBS laboratory in the country | • A proposal for a pilot project screening 10,000 babies in Germany was approved and initiated | |
| • Lack of familiarity with NDBS processes by hospital staff; specimens collected too early | • To implement nationwide NDBS; coalition with private companies for public awareness (Note: Process approved and is beginning in 2011) | • A NDBS workshop was held; began the education process | ||
| • Screening card is in German language | • Shipping schedule initiated; specimens sent to Germany on Fridays by FedEx — abnormal results within 4–5 days | |||
| Mongolia | • Education/awareness lacking — health workers, parents/public, policy makers; policy-maker workshops have been poorly attended) | • To establish financial and legislative support | • Plan have been made to send samples to Germany for CH, CAH, BIO, GAL, and PKU via MS/MS; awaiting government approved | |
| • Remote pockets of population | • To install an integrated infrastructure | • Expanded screening planned; CH, CAH and CMV testing (~US$10), hearing screening(no charge) and hip dislocation (no charge) | ||
| • Model patient management strategies (counseling, treatment monitoring, long-term follow-up) not yet established | • To provide guidelines, policies, procedures, and evaluation techniques | • Hearing screening test guidelines have been developed and health professionals have been trained | ||
| • Some medications difficult to access, particularly for conditions like CAH | • To optimize the diagnostic and treatment capabilities in Ulaanbaatar | |||
| • To educate parents and train healthcare providers, policy-makers | ||||
| • To increase community awareness | ||||
| Pakistan | • Government support uncertain | • Standardize consent, sampling, follow-up and counseling procedures across facilities | • Screening laboratory participates in the CDC NSQAP | |
| • NDBS fee~US$2.35; confirmatory testing, free | • Establish more NDBS screening centers within the country | • CH cases have been detected and confirmed | ||
| • Universal lack of awareness | • Sampling and quality control procedures appear to be satisfactory; results are released quickly for both screening (4 days after collection) and confirmation (24 h) | |||
| • Screening coverage is very limited nationally | • Consent forms discontinued because parents felt that consent implied a potential for harm to the baby | |||
| • Standardized screening procedures are lacking | ||||
| • No consensus on treatment/follow-up strategies | ||||
| • Topical experts are lacking | ||||
| • High home births (65%) and consanguinity (60%) | ||||
| • One dedicated screening laboratory (Lahore) | ||||
| Philippines | • Funding is major problem for those without insurance; NDBS fee~US$12 for 5 tests (CH, GAL, PKU, G6PD, CAH); very low income society | • Increase coverage to 50% in 2009 and 85% in 2010 | • Screening costs remain low at US$12 [advocacy, screening (5 conditions) specimen transport, and recall] | |
| • Home deliveries are approximately 60% | • Include MSUD in the panel of disorders | • Four testing centers have been established and ~3000 hospitals are sending specimens | ||
| • Initiate a pilot study using MS/MS | • A midwifery training program is in place | |||
| • Numerous islands, mountains, and remote areas | • Notice sent that Department of Health will penalize hospitals not complying with the NDBS law | |||
| • High humidity and temperature presents challenge for some tests (e.g. CAH) | • Convince the National Health Insurance policy makers to cover everything including treatment (except confirmatory testing for G6PD deficiency due to high number of patients) | • Plans are being completed for a Master’s program in Genetic Counseling to begin in 2011 | ||
| • Lack of genetic counselors and specialists | • 10 G6PD confirmatory labs available; prices are controlled | |||
| • Produce one genetic counselor per province | ||||
| Sri Lanka | • Poor follow-up after initial tests in some areas | • Obtain health ministry approval for NDBS implementation | • Free screening exists in 2 government hospitals; and a charge of US$2 exists in private hospitals | |
| • Lack of government support has led to discouraged staff and decreased specimens | • Establish a laboratory network to provide testing for the entire country | • Selected hospitals in 2 provinces have local programs with all testing free of charge | ||
| • War has hampered progress | • Establish a Metabolic Screening Reference Laboratory in the private sector as an alternative (if no government support will be provided) | • The Ministries of Health and Higher Education are collaborating on the program | ||
| • Training lacking; specimen collection/submission | • Support from the IAEA was available from 2005 to 2009 | |||
| • Lack of awareness/support from some physicians | ||||
| • Changes in the health bureaucracy are slow | ||||
| • Manpower lacking; results released late (around 3–4 weeks); testing is once a week (Friday) | ||||
| • Issues on who should collect the specimens | ||||
| • 3 labs for country; transport issues persist | ||||
| Vietnam | • Early hospital discharge of newborns (<24 h) | • Increase awareness through television ads, pamphlets | • Develop NDBS Center in Hue to cover 7 provinces in center of country in 2009–2010 | |
| • Parents fear pain from heelstick for their baby | • Institutional workshops about NDBS | • National insurance plan to cover CH and G6PD | ||
| • Hot/humid weather negatively affects specimens | • Develop national plan for program consolidation | • Pilot study of MS/MS metabolic screening underway | ||
| • Specimen transport difficult – mountains, remote | • Develop government plan for national coverage by 3 centers – Hanoi, Ho Chi Minh City and Hue | |||
| • No fixed funding support | ||||