Meningococcal bacteria

Transcript: Meningococcal

INTRO — RICHARD CARLETON: You start off feeling like you're getting a bit of a bug. At worst, a dose of the flu, headachy, that sort of thing. Within hours, you're in hospital, possibly near death and facing multiple amputations if you're to survive the poisons spreading through your body. Now, that's how swift and deadly meningococcal is. This mystery disease strikes more than 600 Australians a year, attacking mostly children and young adults. Now a vaccine is available, one that's proving successful in Britain but here in Australia, it's stalled as we would weigh up the millions of dollars it will cost against the number of lives that might be saved.

STORY — RICHARD CARLETON: At my age, I'm allowed to say that these Hobart teenagers are partying with all the invincibility of youth. Now at their age, they think they're going to live forever. But these kids are the ones most at risk from an extraordinary disease that can kill in hours.

ERIC PASTOR: My name's Eric Pastor. I caught meningococcal disease in September last year. As a result of which, as you can probably see, I lost my fingers and I lost my lower legs. I'm here to today to talk very briefly about meningococcal and make you guys aware of how much you're in a high-risk category. I'd never heard of the disease before I'd contracted it. I'd heard of meningitis as a child but I mean meningococcal, never heard of it let alone tried to spell it. It's ... yeah. I want to go and have a ski with those guys.

RICHARD CARLETON: When it struck him, Eric Pastor had no inkling of what he was up against. One night after work, he and fiancée Renee Watts went for a swim at a local pool. Afterwards, Eric felt, well, just out of sorts.

ERIC PASTOR: Through the evening, I started to feel really cold. No matter what I did, I couldn't warm up. I ended up in bed in a tracksuit, sleeping bag and a couple of doonas but still couldn't warm up. At that stage, I thought I'd just picked up a nasty 24-hour virus. Through the night progressively, yeah, I started to get some vomiting and diarrhoea, began to lose my balance. At that stage started to get really concerned. My partner then decided to phone for an ambulance.

RENEE WATTS: And it was from home to the hospital where he got really sick and developed the rash and fell into the coma and it wasn't until five weeks later that he woke up, yeah.

RICHARD CARLETON: From flu-like symptoms to coma to near death — just 12 hours. To save Eric's life, the spread of the poison had to be stopped and with Eric unconscious, his doctors had to make a harrowing decision.

ERIC PASTOR: The ICU team fought very, very hard to save my fingers and legs and held off the decision to amputate until the last minute, when there was really no other option. When they made the decision to amputate, at that stage amputation wasn't going to guarantee my survival, but not amputating was certainly going to guarantee my death.

RICHARD CARLETON: Was it truly as stark as that, that black and white?

ERIC PASTOR: Yep. Yep. Amputate or die.

RICHARD CARLETON: Eric was one of 671 Australians who contracted meningococcal last year. In some ways, he was one of the lucky ones. It kills about 30 people a year, usually children or young adults.

JOE MacMANAMON: Meningococcal comes and kills quicker than the Ebola virus.

RICHARD CARLETON: Joe MacManamon is the founder of the Meningococcal Foundation. He believes public education on meningococcal has stalled and local GPs are, well, slow to recognise the symptoms.

JOE MACMANAMON: Even one minute, where meningococcal is concerned, can mean the difference between life and death. If your child or your wife or your son has got some of the symptoms — headache, vomiting, temperature appearance of a rash — then the clock is the enemy. Unless you get to the child to the doctor or to the hospital, those minutes could bring about the loss of limbs or the loss of life.

RICHARD CARLETON: Yes, but what you seem to be saying is every time we've got a cold, we should rush off to the doctor?

JOE MACMANAMON: This disease is there, waiting for the months of June, July, August and September to come. And it's one disease that a better educated Australia means that more children will survive, less will suffer amputations and it will be a safer place.

RICHARD CARLETON: The trouble is, for a 21st century disease, meningococcal remains shrouded in mystery. Most frightening for parents is the random nature with which it strikes. Anyone could be next and we simply don't know why. One person in 10 is carrying the meningococcal bacterium at any one time, but amongst the high-risk groups — that's the very young and teenagers — that rate might go up to as high as one in four. It's a very simple test. It's just a swab then the result in 24 hours. But in a sense, the result doesn't matter because if I'm carrying meningococcal bacteria, a sneeze — I might pass it on to you, but what causes it to go from dormant to active in either me or you nobody knows.

PROFESSOR GEORGE RUBEN: The actual chemical factors we don't understand.

RICHARD CARLETON: I don't mean this offensively, why not, why can't you work it out?

PROFESSOR GEORGE RUBEN: Well, we just haven't … the science just hasn't been done. We just have not worked that out.

RICHARD CARLETON: Public health experts like University of Sydney's Professor George Ruben can only tell us what happens once the dormant bug turns nasty and starts attacking the body.

You say this happens rapidly. What do you mean by rapidly?

PROFESSOR GEORGE RUBEN: Rapidly can be within 24 hours and it's a very, very terrifying situation to see. Somehow the organism becomes activated to produce disease, it passes into the bloodstream in the one form and passes to all parts of the body. On one hand, it causes the blood vessels to be permeable and the blood passes out into the skin, causing the skin lesions and ultimately, these large bruises. On the other hand, it releases toxins which causes clotting of the blood and you have small clots which then form in the small blood vessels can block them off and this can actually produce gangrene of the fingers and of the toes, or if it's severe enough, gangrene of the whole lower limb or even upper limb.

ERIC PASTOR: My initial goal was to be able to walk up to my son for his 10th birthday.

RICHARD CARLETON: The disease took Eric Pastor's legs but not his spirit. It's been just four months and he's walking again, with the help of Renee, his greatest supporter.

RENEE WATTS: Yes, I'm always there. Always there for everything.

ERIC PASTOR: My word. This is a partnership.

RENEE WATTS: Yes, we make a good team. It's just a great feeling to see him walking. It's just ... I cried the first time I saw him walking. I just ...

ERIC PASTOR: So did I.

RENEE WATTS: ... just burst into tears. Like, I was just unreal. It's just the best feeling to see him standing up.

ERIC PASTOR: Let's get ourselves into position.

RENEE WATTS: Tell me what you want me to do.

ERIC PASTOR: Just let go. Too easy. Yeah. It's pretty damned good. Yeah.

RENEE WATTS: Do a good job, don't you?

ERIC PASTOR: I try hard.

RICHARD CARLETON: Bring that soccer ball next time.

RENEE WATTS: I will, don't you worry.

RICHARD CARLETON: Now he's conquered that challenge, he's on to his next — a battle to get meningococcal vaccine on to Australia's immunisation list. Though effective on only one strain of the disease, the vaccine has had dramatic success in Britain in the last two years. It's very expensive — $70 a dose, and that's the problem. Making the vaccine free for those at risk would come at a huge cost, close to a quarter of a billion dollars to save perhaps a few dozen lives.

PROFESSOR GEORGE RUBEN: The realistic risk in Australia is somewhere between one and two per 100,000 people in a year. Now that's a fairly low risk. That's a very low risk.

RICHARD CARLETON: Unless you're the one.

PROFESSOR GEORGE RUBEN: Obviously unless you're the one but there is a higher chance, for example, of being a victim of a car accident.

ERIC PASTOR: It is very, very small at the moment but it is on the increase, that's the danger. I mean, as it continues to grow, do we take the decision to wait until the disease hits epidemic proportions or while we've now got the opportunity to nip it in the bud, surely we should be trying to prevent the disease from growing now.

RICHARD CARLETON: How is it that the British have been able to make up their minds?

PROFESSOR GEORGE RUBEN: Countries have a different point at which they would consider it worthwhile, a government subsidised program, when the cost is usually tens of thousands per life year saved which is a measure that we use in public health to really assess whether an intervention is worthwhile on the public purse, if you will, and it's usually something of the order of something like $50,000 or $60,000 per life [per] year saved and that's the calculus that's usually brought into play.

RICHARD CARLETON: But how do you put a price on a life like this little girl's? Eight-year-old Kimberley is possibly the most delightful child I have ever met. She's suffered horrifically but shows not the slightest sign of it in her behaviour. Two years ago, she made it to the hospital just in time for the antibiotics that saved her life. Mum, Nancy Lee, had heard of meningococcal but her worst fears were confirmed in the emergency ward.

NANCY LEE: The doctor came in and he said to me that your daughter cannot get any sicker than she is. She's a very sick little girl. She had meningococcal septicaemia. And he said she may or could die in the next couple of hours. She was on life support, her kidneys weren't working, her lungs weren't working, her liver was giving in. And she was facing the fight of her life and that's exactly what she had. She had the fight of her life on.

RICHARD CARLETON: Kimberley was in hospital for three months and emerged shockingly scarred. At the age of seven, she suffered depression and lost fingers and toes to gangrene. So Kimberley, all up, darling, what have you lost?

KIMBERLEY LEE: Three, um, four fingers and seven toes.

NANCY LEE: She lost them at home.

RICHARD CARLETON: What, they dropped off?

NANCY LEE: Yes, they did. We had the finger fairy and the toe fairy and the tooth fairy. So she used to wear a second skin outfit and it was the first weekend home and we took the second skin foot off and what happened?

KIMBERLEY LEE: And a toe was in there ...

NANCY LEE: And it fell off. It just ... off.

KIMBERLEY LEE: And when I was playing chases in the house, the nail came off.

RICHARD CARLETON: Goodness gracious me.

NANCY LEE: And that's what happens. We got $50 a toe and $50 a finger.

RICHARD CARLETON: Did you actually get $50 for each finger?

KIMBERLEY LEE: Pinky.

NANCY LEE: She did, yep.

JOE MacMANAMON: This is not a rare disease. This is a very common disease. Rest assured there will be headlines. Rest assured people will be lost, people will die. It's not a question of how much money should be set aside to do something about meningococcal.

RICHARD CARLETON: They may be few in number but the victims of meningococcal are determined to have their voices heard.

ERIC PASTOR: I always try to look for a positive in every negative and the positive side of this is this has now given me an opportunity and Renee an opportunity to get out there and raise the profile and awareness of the disease. I mean, if by me doing what I'm doing I can save one person, well, what's happened to me hasn't been for nothing.

RICHARD CARLETON: It is a truly horrific disease. So, do we spend the hundreds of millions of dollars needed to fund a full-scale vaccination program?

PROFESSOR GEORGE RUBEN: The vaccine is available.

RICHARD CARLETON: That's the question doctors, like George Ruben, who heads the technical advisory group, are now grappling with.

PROFESSOR GEORGE RUBEN: And then the community has to ask, how much money do we put into vaccines, how much money do we put into breast cancer, how much money do we put into care of older people, how much money for helping people to walk and so on … these very, very difficult decisions.

NANCY LEE: I can't put a price on life. If you can prevent someone from getting sick, then it shouldn't matter how much it cost, should it?

RICHARD CARLETON: Well, if it cost $100, it doesn't matter, but what if it costs $100 million?

NANCY LEE: But look at this. It's very important to have it done. It's very important. Look at her. Isn't she beautiful?

RICHARD CARLETON: Mmm.

NANCY LEE: She's beautiful.

JOE MACMANAMON: We can do a lot. We can fight it. I'm not saying we can beat it yet but by God, we should be standing up and doing something about it. If ever we get to the point of putting a price on a vaccine, or putting a price on a life, I think a lot of things will shut down. Australia is built on goodwill and the support of the community at large. Our children are beyond price.