Rheumatic fever: NZ's third world illness

Starship hospital cardiologist Nigel Wilson with an echocardiogram that measures heart performance. Photo / Paul Estcourt

Nigel Wilson would rather concentrate his considerable expertise in young hearts on congenital defects.

Instead, the children's doctor spends a lot of his time diagnosing and treating a disease he really shouldn't have to worry about.

Rheumatic heart disease is rampant among Maori and Pacific children in New Zealand.

It is one of those Third World diseases found at distressing levels in New Zealand, but only among the country's poorest children.

Not only that, it's getting worse. Notifications and hospital admission statistics for Maori and Pacific people track steadily upwards, though the rate for Pakeha remains low and steady.

You don't find rheumatic heart disease in much of Europe or America any more. You do find a lot of it in developing countries, particularly sub-Saharan Africa - and in pockets of New Zealand.

A simple streptococcus throat infection, which is easily treatable, can lead to permanent heart defects in children who often end up at the Starship Children's Hospital in Auckland, or one of the region's other hospitals. Dr Wilson and his colleagues then have to tell yet another family their child may have ongoing heart problems and a shorter lifespan.

This is disgraceful, says Dr Wilson, who took the unusual step of venting to the Herald in the opinion pages last week.

Such venting is not unheard of in a doctor but is still rare enough to underscore the high levels of frustration in health professionals trained to care for sick children.

Rheumatic fever, the paediatric cardiologist says, needs to be etched into the public conscience in the same way cervical cancer and breast cancer have been.

This public awareness must be led by the Ministry of Health, he says, who must also commit funding to wiping out the illness through primary prevention.

Sore throats matter, he says, and they are treatable: "I think we're not going to get anywhere until the Ministry of Health takes rheumatic fever seriously."

Up to 200 people die from rheumatic heart disease each year. They are mainly adults dying young, showing the far-reaching and devastating consequences of an untreated sore throat in childhood.

About 20 children each year have heart surgery because of the disease and there are far greater numbers of operations and hospitalisations of young adults, he says.

Dr Wilson turns off the Wallace & Gromit video playing in a little room at Starship.

He is demonstrating a $300,000 echocardiogram, which is displaying a moving image of a child's damaged heart.

On the bed he has a $50,000 portable echocardiogram which he has used to take into low-decile primary schools in Auckland, where 2 to 3 per cent of children have been found to have had clear evidence of rheumatic heart disease which had not previously been picked up.

A course of penicillin to get rid of a strep throat is far more cost-effective than the $30,000 spent for each heart operation.

One of the frustrations, he says, is that the Government and drug agency Pharmac have had campaigns telling general practitioners that most sore throats are viral, therefore they should not give antibiotics.

That's fine for 78 per cent of the population who are not vulnerable, but the wrong message for the 20 to 30 per cent of children who are susceptible to the streptococcus bug (a bacteria) which often lives in poor areas and overcrowded housing.

When a child lies on the bed in Dr Wilson's room and is diagnosed through the echocardiogram as having preventable heart disease, it is very sad and very unfair, as the children come from loving families, he says.

"If the horse has bolted and the heart is damaged, families are then looking at a child with a shortened lifespan and a number of operations to look forward to."

This would not be happening if the problem was confined to wealthy suburbs, he believes.

"We need to change the statistics. I would be very angry if I was Maori or Polynesian and saw my family affected by this. I'd be extremely angry.

"But the current approach of clinicians waving flags and saying this is a problem has not got through to the funders or to the public consciousness."

Dr Wilson says he should not be an expert on this illness.

"Our cardiac team is right up with the modern approach to rheumatic heart disease, but in a way it's a bit sad, it's a bit ironic, that we are like that."

A long-term lobbyist for rheumatic fever awareness is Diana Lennon, a professor of population and child health.

She is more optimistic though.

There are solutions, she says, and professionals have developed a clear plan of what needs to be done.

"We're having a round table in Auckland on Monday to plan further."

A primary prevention initiative which has been running in six schools in the Northland town of Kaeo for seven years, has proved statistically significant, she says.

Sore throat clinics were set up, affected children treated with penicillin for 10 days, and there has been no rheumatic fever there for seven years.

Other of these sore throat clinics are running or are being planned for other parts of the country, but Auckland is a thorny problem because of sheer size.

Between 50 and 70 schools in Auckland are considered high risk and 60 per cent of cases occur in Auckland.

The evidence sore throat clinics work is clear, she says.

The politicians and the Ministry of Health need to look at the evidence and move on it.

A workshop held earlier this year established as its aim a reduction in the rheumatic fever rates of Maori and Pacific people to European levels by 2020 - and that is achievable, she says.

Though this is an illness of poverty and overcrowding, she believes it can be over-ridden with the proper delivery of healthcare.

She thinks the Government is coming round to the need to fund such widespread action.

"All the cards are on the table now. I mean, they haven't signed up for the money but I think there are so many cards on the table now it's going to be difficult to walk away from."

This disease is an indicator of inequality, she says.

She says we need to look at all the major things that feed into this - one is probably housing - "but housing takes too long".

"In the meantime we need to look after the kids who can't get access to healthcare and don't have decent housing but can actually have this disease controlled."

It's interesting, she says, because in the 1920s the rate in the city was 60 to 80 cases of rheumatic heart disease per 100,000 people and they were mostly Pakeha - Maori lived mainly in the country back then.

Now Maori and Pacific Islanders have that rate but Pakeha rates are down to one to three cases per 100,000.

"This is not a genetic problem, this is a disease of poverty, this is a disease of access to healthcare."

If people are carrying the disease they are less able to be educated and to work and they will cost the system.

"It's a no-brainer," she says.

A Ministry of Health spokesman says the ministry is concerned about rheumatic fever and accepts it has a national role in co-ordinating the response to the high rates.

"Unfortunately there is no quick fix," says Dr Greg Simmons, chief adviser on population health, but he agrees sore throats are paramount. "Increased awareness of the significance of sore throats and the need for prompt treatment so carers take children to a GP or nurse is the first step."

A big step forward is a plan to fund a position for a national rheumatic fever co-ordinator, to work alongside district health boards and other agencies to assess the options and ensure the right services are in place for those most in need.

RHEUMATIC FEVER

Often starts with a sore throat (a streptococcal infection)

A few weeks later a child may develop:

* Sore or swollen joints,
* A skin rash,
* A fever,
* Stomach pain,
* Jerky movements.

Although these symptoms may disappear, the heart valves may be damaged and this damage may be permanent.

This is now rheumatic heart disease, leading to persistent problems and sometimes a shortened lifespan.

WATCH OUT FOR

Public health officers are urging people to be vigilant for more illnesses currently circulating at higher rates than usual among children in the Auckland region.

Whooping cough

Status: Epidemic

* 159 notifications for the year so far compared to 38 for the period last year.
* 80 per cent to 90 per cent of babies will be protected after three doses of immunisation.
* Immunisation rates are not high enough to prevent epidemics, and late immunisation is a problem.
* Babies can become blue, a bit hypoxic and struggle to breathe.
* Once children start coughing they can't stop. Coughs tend to end with a "whoop" and sometimes vomiting.
* No other prevention except immunisation.

Measles

Status: Watching

* 27 notifications from July to this month.
* Highly infectious, vaccine-preventable. Immunisation takes place at 15 months and 4 years.
* Measles can be very nasty. About one-in-three cases will have complications, and around 10 per cent of cases end up in hospital.
* Symptoms include headache, fever, runny nose, dry cough, sore eyes.