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HIV and Pregnancy - to test or not to test? One of many pressing issues in child health. Press release 21 October 2004.

Advocates for a universal system of antenatal screening for HIV, as a method of reducing transmission from a HIV positive mother to her baby, may need to take a number and wait in line with other groups seeking to improve the health of babies, says the New Zealand Organisation for Rare Disorders. HIV screening could prevent transmission of HIV to about five babies each year.

“There are several other significant prevention, diagnostic and treatment options for improved child health that are waiting for approval by the Ministry of Health and DHBs. We have been pushing many of these for several years now, and we still have some way to go before many of them are likely to be implemented,” says NZORD Executive Director John Forman.

NZORD has been lobbying for a sharper focus and more funding for a variety of programmes to prevent serious disease and disability in babies and to improve detection and treatment of those that are not prevented.

“For example, there’s a similar number of babies whose lives will be saved each year, if an upgraded machine is used to improved the quality and range of newborn screening tests for babies, and alert parents to serious metabolic diseases. We could also do faster and more accurate diagnosis for many diseases with that same machine, a tandem mass spectrometer,” says Forman, “but we need to come to grips with all the possible interventions for the health of newborn babies, and make sure we do them in a well planned way, as well as soon.”

The Ministry of Health is considering a number of different proposals that focus on the prevention of diseases and promotion of health of newborn babies. These include plans for a vitamin supplement in food to prevent neural tube defects, hearing screening to pick up deafness soon after birth, PGD (pre-implantation genetic diagnosis) technology to prevent serious inherited diseases, and new technology for the Newborn Screening Programme.

NZORD is frustrated with the time taken to decide on many of these proposals. They estimate that lives saved and serious disability avoided by the introduction of these innovative programmes, would be more than similar benefits expected from the meningococcal vaccination programme.

“Looking at cost comparisons (over $200 million for the vaccination programme) makes the approximately $15 to $20 million cost of these other innovations for the prevention of diseases and health of newborn babies, a very good investment indeed,” says Forman, “but there needs to be more commitment to get them implemented sooner.”

“When priorities are dominated by primary care developments, health workforce problems, hospital waiting lists and major health costs like heart disease and cancer, it is inevitable that these important population wide matters will obscure important innovations that can make very big differences in smaller but significant numbers. It then becomes a matter of good policy and planning to look carefully at those things that may end up on the margins of health policy as a result of the big picture priorities, and ensure they are not pushed into a state of relative neglect.”

NZORD urges the government and Ministry to allocate dedicated funds to the many innovations possible for prevention of disease and disability, and improvements to the health of our newborn babies, so these programmes can be implemented with greater urgency than the present slow and frustrating pace.

John Forman
Executive Director
21 October 2004