Folic acid will be put in bread-making flour to prevent devastating birth defects. Nicholas Jones reports on New Zealand's folic acid debate, and its heartbreaking legacy.
Daniel Belcher has had more than 40 operations, the first when he was barely a day old.
The 12-year-old's spinal column didn't close in the womb — a neural tube defect called spina bifida.
The first surgery covered a lesion on his back. Later, rods were placed to straighten his spine.
Other operations fixed leg fractures; the Waikato boy's lower body is paralysed and bones have weakened from lack of use. He has development delays as a result of irreversible damage caused by pressure from fluid on his brain as an infant.
"Daniel certainly has more challenges to his life than the majority of kids," says his mother, Diane Belcher. "But I just look at him as Daniel. He's perfect in my eyes; a challenge, sometimes stubborn, a skilled negotiator, chief organiser, with a wicked sense of humour."
But Belcher is aware that fewer Kiwi kids need to face the challenges her boy has.
For decades, it has been known that getting enough folate, a natural B vitamin found in foods such as leafy green vegetables, slashes the risk of neural tube defects. More than 80 countries put the vitamin into food staples like bread.
Now New Zealand is finally set to catch up - the Herald can exclusively reveal the Government will today announce folic acid will be added to all non-organic bread-making wheat flour (a process called fortification).
The confirmation will be bittersweet for the medical and scientific communities, and for patient groups such as the Spina Bifida Association of NZ, which Belcher founded.
New Zealand and Australia were set to bring in mandatory fortification in 2009. Australia went ahead, and birth defects there fell. But John Key's newly elected National government scrapped the initiative, after an opposition campaign led by the Food & Grocery Council, an industry lobby group, warned of possible risks including cancer from "mass medication" and labelled fortification an example of the "nanny state" overreaching.
In June 2018, then NZ Prime Minister's Chief Science Advisor Sir Peter Gluckman examined the Australian experience and other international evidence and research in a comprehensive, peer-reviewed scientific review. The conclusion: fortification of packaged bread had "compelling" benefits, with "no evidence of harmful health effects of folic acid supplementation in adults, at least at low doses in the range suggested for fortification".
In 2019, the Ministry for Primary Industries estimated that up to 180 pregnancies affected by a neural tube defect in the past decade could have been prevented if mandatory fortification had gone ahead. More than half of such pregnancies are terminated or result in stillbirths.
This figure, first reported by the Herald, was likely an underestimate. As our investigation reported, the Medical Association and College of Public Health Medicine believes fortification would also prevent as many as 200 miscarriages a year earlier in pregnancy. (MPI counted only live births, stillbirths and terminations, in what it called a deliberately conservative approach.)
The Herald's reporting told the stories of families that were affected by birth defects, including Davina Maddox, who lost her unborn son. Learning parts of his brain and skull hadn't developed, "was one of the worst things I've ever been through", she said. "I was hysterical. It made me a bit crazy, because I knew there was nothing I could do to help him."
A safety net for those who don't realise they're pregnant
The neural tube is the part of an embryo that becomes the brain and spinal cord. Defects happen when a portion doesn't close properly. This affects about 64 pregnancies in New Zealand every year. Such pregnancies are often terminated.
Most are cases of spina bifida. Anencephaly, the defect that Davina Maddox's son had, isn't survivable.
Getting enough folate greatly reduces the risk of such defects, although it doesn't eliminate it entirely. It's very hard to get enough from diet alone, so women are advised to take folic acid tablets before and in early pregnancy.
However, more than half of pregnancies aren't planned, including around 80 per cent for young mothers, 75 per cent for Māori and 71 per cent for Pacific New Zealanders. When those women know they're pregnant it's often too late, because the neural tube closes 15-28 days after conception.
Diane Belcher fits that category. She was 40 and had three adult daughters when she realised she was pregnant with Daniel.
Her concern at the 18-20 week ultrasound was to find out the sex, "because I had long since got rid of all our baby gear, so I sort of needed to go shopping".
"But, as I soon found out, that scan is not a gender reveal scan. It's called a fetal anomaly scan for a very good reason."
Belcher, a Christian, says she never considered termination.
Twelve years later, Daniel, her "gorgeous, happy, chatty, cheeky cherub" is an enthusiastic tour guide when the Herald visits the 650-hectare sheep, beef and dairy farm where he lives near Cambridge.
Kaitlyn Barr, a student occupational therapist, works the foot controls of a Polaris Ranger off-road buggy. Daniel takes the wheel. A Herald photographer hangs on in the back.
"He has his own 1.7-tonne digger, and he can use that digger better than adults who work for earth-moving companies," Belcher says. "He can tell you more about trailers and towballs than you ever want to know. He's taught all his care workers how to back a trailer.
"He's got a real engineering-bent to his little brain. Even though he has developmental delays, he's so switched on," says Belcher, adding a mother's pause. "To the things he wants to be switched on to."
Daniel leads a rich life. But for many families spina bifida brings huge challenges, because of a lack of wider understanding and support.
Waikato Hospital's paediatricians and surgeons had been "absolutely fabulous", Belcher says, but her work with the Spina Bifida Association means she's aware care can vary depending on the DHB, and becomes fragmented once kids graduate into the adult system.
Another problem stems from children often needing catherisation, because nerves controlling the bladder are damaged. Parents can't work because they have to go to early childhood centres and schools every few hours to help their child, Belcher says. One mother recently withdrew her 8-year-old from school because her nappy wasn't changed enough, causing infection.
"That is a barrier to education. There doesn't seem to be anybody in the Ministry of Health or Education who is willing to fix what is a terribly broken system."
What's happened overseas
Countries with mandatory fortification have lower defect rates than New Zealand.
The Australian example is compelling. After mandatory fortification, the rate of defects dropped by 14 per cent overall, and by 74 per cent for indigenous women and 55 per cent for teenage mothers. This has been recognised by Australia's public health association as one of the top 10 public health successes of the past two decades.
The change was a long time coming. In the 1980s pioneering work by Western Australian researchers, professors Fiona Stanley and Carol Bower, contributed to worldwide research that made the link between folate and neural tube defects.
That led to a campaign in Western Australia encouraging women wanting to get pregnant to eat folate-rich foods and take supplements, the first in the world to do so, and a great success soon copied in other areas.
But there were women who, for whatever reasons - health literacy, unplanned pregnancy - weren't reached. It was another 15 years before Australia addressed this by adding folic acid to bread-making flour - a timeframe Dr Stanley told the Herald was "appalling".
Claims of possible ill-health effects were red herrings and had come to absolutely nothing, says Stanley, who was named Australian of the Year in 2003 and has a hospital named after her. That left the 'nanny state' objections.
"What these people are saying with, 'You don't tell me what to do', is, 'I'm accepting that there should be this group of people who have a neural tube defect, throughout their whole life'. I find that really cruel."
The strength of past opposition in New Zealand is unusual. In the US, for example, enriched grain products have been fortified with folic acid since 1998, with little controversy.
Policy-makers were persuaded by the groundbreaking work of Dr Godfrey Oakley and his team from the birth defects division of the Centers for Disease Control and Prevention (CDC). Oakley now leads a spina bifida research center at Atlanta's Emory University, established with the goal of eliminating preventable spina bifida globally, and told the Herald mandatory fortification never attracted political heat in the US.
The CDC had estimated total savings in healthcare and other costs of at least $18 billion, he says, and the initiative had reduced cases of spina bifida to those not linked to folate levels. He likens that success to the polio vaccine.
"This is a fool-proof, cheap intervention that saves tonnes of lives and money. Yet, for 30 years we haven't used it in many countries. People don't understand that this prevents babies from dying."
Ongoing opposition from industry
Food Safety Minister Dr Ayesha Verrall says adding folic acid to all non-organic bread-making wheat flour (as happens in Australia) is expected to prevent 162-240 neural tube defects over 30 years, and save $25 million and $47 million over the same period in health, education and productivity costs.
"This B vitamin is safe and essential for health, particularly for development of babies early in pregnancy. Folate is naturally present in food - folic acid fortification restores what is lost during processing such as flour milling.
"Organic and non-wheat flour will be exempt from fortification, providing a choice for consumers who don't want to consume folic acid."
Under New Zealand's current voluntary system less than 38 per cent of packaged bread has folic acid, below the aim to have half of packaged sliced bread fortified.
The Food & Grocery Council (FGC) has called for the voluntary system to continue, while more consideration is given to what it claimed was emerging evidence of possible health risks.
It said those risks include over-consumption of folic acid including by children, whether an elderly person with high folate but low vitamin B12 levels could have faster cognitive decline and what unmetabolised folic acid might do to the nervous system.
"[Over-consumption] and other health risks were considered by the US National Institutes of Health in August 2019. It would be sensible and responsible to consider the report of that enquiry before proceeding," it submitted to MPI in 2019.
The Herald asked the National Institutes of Health about the findings of that work, which called for more research. "The conclusion of the workshop related to folic acid fortification was that the current evidence on potential adverse health outcomes remains inadequate and does not raise to any policy level guidance," a spokesperson said. "Currently there is strong evidence that folic acid substantially reduces the incidence of neural tube defects, and mandatory fortification programs in over 80 countries have been highly successful."
In a press release after today's announcement, Katherine Rich, chief executive of the FGC, said its opposition was informed by extensive advice and research, including from Professors A. David Smith and Helga Refsum at Oxford University's pharmacology department.
"We encouraged Ministry for Primary Industries officials to have direct, expert-to-expert discussions with them but there appeared to be no interest in this.
"Professor Smith read and largely supported Professor Gluckman's report. They had drawn on most of the same papers and conclusions. Where they differed was in their scientific opinions on the potential harms of exposing all non-targets for the fortification with the additive and the absolute numbers of potential cancers."
Rich said data on what New Zealanders eat is "wildy out of date", and the Government "runs the risk of flying blind on critical decisions about nutrition and the food supply".
"We told the Government it needed advice on how much folic acid was already in the food supply before further intervention. Professor Smith advised that with current fortification rates and blood folate levels in the New Zealand population, further benefits of mandatory fortification were likely to be marginal."
Set against continuing industry opposition is a groundswell of organisations that want the change, including the Ministry of Health, College of Obstetricians and Gynaecologists, College of Midwives, Pharmaceutical Society, College of Physicians, NZ Nurses Organisation, Cancer Society, Consumer NZ and individual public health and medical experts, scientists and GPs.
"Morally, it's the right thing to do," said Gluckman, who as Chief Science Advisor led the 2018 review into folic acid fortification, and spoke to the Herald last year.
"Every country that I can think of that systematically looked at it has, in one way or the other, come down on the side of favouring supplementation."
Lyall Thurston has for nearly 40 years spearheaded the campaign for folate in bread, after his oldest son was born with spina bifida in the late 1980s. The Rotorua councillor told the Herald the status quo was undefendable.
"We knowingly commit kids to wheelchairs. It is bizarre. It is medical, public health malpractice."
Under the plans announced today, folic acid won't be added to bread-making flour until mid to late 2023, about 14 years after Australia made the change.
For Diane Belcher, it's a heartbreaking lag.
"Unborn babies and their families are paying with their lives, because successive governments and the food industry have delayed folate fortification."