Australian Health Minister’s bid to censor CF comments backfires

Australia’s Health Minister Peter Dutton may be regretting his decision to remove posts on his Facebook account complaining about access to Vertex’ cystic fibrosis drug Kalydeco.

Patients and carers for people with CF had already taken to social media to express their outrage that Australia has yet to finalise a decision on subsidising Kalydeco (ivacaftor) for the approximately 200 patients in Australia who could benefit from the drug.

Now, the revelation that posts were deleted on Dutton’s Facebook page from those complaining about the delay earlier this month has added fuel to the fire – with the comments appearing with renewed regularity.

“You are directly responsible for denying hundreds of people with life threatening diseases access to life saving drugs right now, despite them being available to other patients across the world,” writes Laura Mary Egan, a mother of children with CF from New South Wales.

A visit by Dutton to the Commonwealth Games in Glasgow last week prompted the following observation from Rachelle Haikalis: “Good luck to all Australians competing!! Hopefully Mr Dutton will one day sit with my daughter cheering her on … because the medication K has improved her health!”

According to a News Corp Australia report, on July 12 Facebook comments relating to Kalydeco were all removed after one parent used a swear word in a post and claimed the subsidy delay was “killing” patients.

Responding to news of the censorship, medical charity Cystic Fibrosis Australia (CFA) said it was “upset that [Dutton] is not wanting to listen to our valid concerns about his government’s failure to move quickly to help those in our community whose lives could be dramatically improved on Kalydeco.”

Dutton’s staff claim posts are no longer being blocked or deleted. However, campaigners claim this is not the case and a comment to the forum posted by this reporter – containing the word ‘Kalydeco’ – appeared only temporarily before disappearing.

Meanwhile, the Minster has attracted further criticism after implying the social media campaigns were “pushed by the company and their media relations company.”

Haikalis and other parents have refuted suggestions they are being manipulated by the pharma company, telling the news agency that the #yestokalydeco campaign is “just a group of parents with kids.”

Australia’s Pharmaceutical Benefits Advisory Committee (PBAC) recommended shortly after its approval that Kalydeco should be included in the state Pharmaceutical Benefits Scheme (PBS), but suggested the A$300,000-a-year Vertex was asking for the drug was too steep.

It deferred a decision on subsidisation, but the Australian government now says there is a deal on the table for Vertex which would remove the deadlock.

Dutton wrote an editorial on the health budget in the Mercury newspaper yesterday that suggests spending on the PBS has swelled from five billion Australian dollars to nine billion Australian dollars in the last 10 years.



Australian patients mobilise to fight Kalydeco block

Don't miss your daily pharmaphorum news.
SUBSCRIBE free here.