LEIGH SALES, PRESENTER: Any new mother, me included, will tell you there's nothing more terrifying than the prospect of your baby contracting an infectious disease before they're immunised. Whooping cough is one of the scariest. In the last four years, eight babies under four months old have died after contracting it. In 2008, after a whooping cough epidemic, free vaccination schemes were introduced, but Victoria has now moved to scrap its scheme and other states are considering following suit. It's prompted one mother who lost her baby to whooping cough to take up a campaign. Lisa Whitehead reports.

LISA WHITEHEAD, REPORTER: These parents are getting ready to take their new baby girl home from hospital.

Before they leave, this new mum is getting a free whooping cough vaccination, increasing her immunity to a highly infectious disease that kills one in 200 newborns who catch it.

STEVE HAMBLETON, AMA FEDERAL PRESIDENT: Tragically, when we look at babies, where did they get that infection? In many cases it's actually from those significant adults, either mum or dad in the household.

LISA WHITEHEAD: Babies don't get their first vaccination against pertussis, or whooping cough, until they're six weeks old and they're not fully immunised until they reach four months.

TONY MCCAFFERY: It's those first initial four months a baby's completely unprotected, so if people around them can be protected, then they've got a fighting chance.

LISA WHITEHEAD: It's been thought vaccinating adults in close contact with newborns offers babies a chain of protection. It's called "cocooning".

PETER MCINTYRE, NATIONAL CENTRE FOR IMMUNISATION RESEARCH: By immunising their parents that's, you know, the biggest single potential source, but clearly there are lots of other sources and that cocoon could have holes in it.

LISA WHITEHEAD: After 2008, when a whooping cough epidemic swept across the country, most states introduced schemes offering free vaccinations to new parents, care givers and in some instances even grandparents.

PETER MCINTYRE: How many adults overall have had whooping cough boosters? Oh, it'd be about 10 per cent. Amongst the particular type of group, which is parents of young babies, I suspect that that percentage has gone up quite a bit since the various states have been funding programs. We don't have hard data about that, but my guesstimate would be that maybe it's 40 or 50 per cent.

LISA WHITEHEAD: But now, as infection rates have started to come down in most states, government programs providing the free vaccines have been shut down or are under threat. Victoria will scrap its scheme at the end of June. The New South Wales and Queensland programs are also only funded until then and are currently under review. Western Australia has just announced an extension, but only until the end of the year. The Australian Medical Association says it's concerned by the moves.

STEVE HAMBLETON: It looks like we might be getting on top of this epidemic. We're taking one of the planks away which may actually continue that fall of the disease.

LISA WHITEHEAD: Toni McCaffery lives near Byron Bay in northern New South Wales in a region that has one of the lowest immunisation rates in the country. She lost her daughter Dana to whooping cough in 2009. She was just 32 days old.

TONY MCCAFFERY: I went to a doctor four times over three days until she was tested. The doctor said, "No, it's just a cold. She's not hospital material." Five days later, my baby is dead.

LISA WHITEHEAD: Since the tragedy, the McCaffery family has fought hard to raise awareness through public health campaigns. Toni McCaffery says their message will be undermined if the schemes are scrapped.

TONY MCCAFFERY: It leaves parents utterly confused, and at the end of the day, it leaves tiny babies vulnerable.

LISA WHITEHEAD: These parents all watched helplessly as their babies fought for their lives after being infected with whooping cough. Dianne Cherrie's daughter Tori Rose was the face of the Victorian Health Department's campaign to encourage adults to get vaccinated.

DIANNE CHERRIE: It's quite disgusted that I didn't even receive an email to let me know that it was going to be scrapped.

LISA WHITEHEAD: Today, an open letter signed by these mothers, Toni McCaffery and 50 other parents, was sent to all Health ministers, pleading with them to think again.

TONY MCCAFFERY: We're saying, "Please hold back on your decision to withdraw the program until you have a better solution. But don't just do nothing."

LISA WHITEHEAD: The Victorian Government's decision to scrap the free vaccination scheme is in response to a ruling by the Commonwealth's Pharmaceutical Benefits Advisory Committee, or PBAC. It rejected an application to place the drug on the national immunisation register, saying there was insufficient evidence evaluating the cocooning strategy and so its clinical effectiveness was uncertain.

DAVID DAVIS, VICTORIAN HEALTH MINISTER: There's now been two detailed decisions by the Pharmaceutical Benefits Advisory Committee, as I say, a independent national body that's looked at these matters and actually concluded that the evidence isn't there to support a population based approach.

LISA WHITEHEAD: And that's the nub of the problem. Professor Peter McIntyre is the head of the National Centre for Immunisation Research and Surveillance. He supports cocooning and his centre is in the thick of a study assessing its impact.

PETER MCINTYRE: We don't have concrete data to prove it's this much of a percentage protection, it's that much. We know that it should work, but we don't have hard data to prove it.

LISA WHITEHEAD: The upshot of PBAC's decision is the vaccination program doesn't qualify for Federal Government funding and the states will have to keep paying. In Victoria, that's a cost of $3 million a year.

DAVID DAVIS: This is nothing to do with money. This is about evidence presented to the Government.

LISA WHITEHEAD: PBAC also ruled the free vaccine program was unlikely to be cost effective. Since 2008, eight babies under four months have died of whooping cough, not enough deaths to meet its criteria.

TONY MCCAFFERY: What they're saying is that the cost of free boosters for adults is too expensive. So they've put a value on babies' lives like Dana and they've said, "It's not worth saving them," and that's pretty hard thing to accept.

LISA WHITEHEAD: Alternatives to cocooning, including trials vaccinating babies directly two days after birth, are being investigated, but it's still early days.

STEVE HAMBLETON: We would say let's run the trials, let's have a look at a better opportunity or maybe a more cost effective way of going about it, but please consider maintaining the funding until we get that data.

TONY MCCAFFERY: My fear is that in a few years' time I'm gonna see another mother like myself on television and that's a pretty horrid price to pay.

LEIGH SALES: Lisa Whitehead reporting.

Just quickly, a big thank you to all those viewers who responded to our story about the famine in Niger last week. You gave $86,000 to the West Africa Food Crisis Appeal. Thank you so much for your generosity.