Pharmac has for decades refused to fund Synagis drug that could save vulnerable babies from RSV

Newshub can reveal after two decades of refusing to fund a drug that could halve the hospitalisations of vulnerable babies with respiratory illness, RSV, Pharmac is now urgently considering a fix.

Doctors have been fighting to make the drug accessible and one family who nearly lost their child to the virus has told Newshub about their devastation after learning that Pharmac had blocked it.

Anna Sutherland's son Heath is a medical refugee - forced from his Kiwi home. He has spinal muscular atrophy, or SMA, which erodes muscle nerves. And because Spinraza, the drug he needs, isn't funded in New Zealand, his family gave up their home and support to move to Australia. 

The change in Heath's health has been significant. 

"The way he was in New Zealand, I'm confident he wouldn't have lived this long. we were just living in ICU," his mum told Newshub. 

As a high-risk baby in New Zealand, Heath was in intensive care five times with RSV - the respiratory virus currently overwhelming our hospitals. And every time, a little bit of Heath was lost.

"He lost ability to sit up, he lost his ability to have the energy to feed himself, he lost the energy to chew food," says Sutherland. "Those abilities never came back."

What the Sutherland family didn't know was that there's a drug that saves high-risk babies: Synagis. 

Dr Jane Alsweiler, Associate Professor at Auckland University's Department of Paediatrics, says it can "prevent those really vulnerable babies from getting infections with RSV and from having to go to hospital and having to go to intensive care". 

Synagis has been around for two decades, and paediatricians have been asking Pharmac to fund it for vulnerable babies for just as long. 

"Applying for Synagis for vulnerable babies can be frustrating because the reply from Pharmac is pretty much always the same, which is no," says Dr Alsweiler. 

After everything the Sutherlands have been through because of Pharmac, learning Pharmac was refusing to fund an RSV prevention as well, was too much.

"I actually just cried," says Sutherland. "It's so unnecessary, like we had to talk about resuscitating Heath, we had to talk about putting Heath on palliative care."

Prime Minister Jacinda Ardern is outright washing her hands of it. 

"We do leave all of those treatment options and funding to Pharmac," she told Newshub.

One doctor told Newshub that applying to Pharmac for Synagis is like banging your head on a brick wall. 

Paediatricians have made an emergency application for funding to treat vulnerable babies in this current RSV pandemic.

But because Pharmac did not proactively fund it, we're already two months into the RSV season, and because of its refusal to fund it historically, there are virtually no stocks in the country.

Synagis is expensive, costing about $10,000 per baby per season. Pharmac declines applications based on an ancient 2002 study which says the cost of sending babies to ICU is cheaper than preventing the virus.

"They're literally happy for you to just die and hope that the families will just fade away," says Sutherland. 

But because they don't - they keep fighting, and doctors too - there's finally hope for future funding.