HEALTH Minister Peter Dutton has enraged parents of sick children by removing their posts from his Facebookaccount and accusing them of working for a drug company.
The parents are pleading for a subsidy for a breakthrough $300,000 per person per year medication that treats the deadly cystic fibrosis disease whose sufferers have a life expectancy of just 38 years.
On Saturday, July 12 those managing the minister’s Facebook account deleted all posts relating to the medicine Kalydeco after one parent used a swear word and said the subsidy delay was “killing” sufferers.
For more than a week afterwards parents who wanted to post on the website using the word Kalydeco claim subsequent posts were blocked from public view.
Mr Dutton explained the decision to an online pharmaceutical journal Pharmadispatch claiming that “social media campaigns pushed by the company and their media relations company will have no influence on the outcome”.
A spokesman for the minister told News Corp Australia, Kalydeco posts were no longer being blocked.
“The Minister is happy to hear from parents who are understandably desperate to see the medicine listed immediately, however social media campaigns will have no bearing on the outcome,” he said.
“Decisions to list medicines on the PBS will not be made for political reasons; they will be made on the independent advice,” he said.
There is a deal on the table for the company and the Minister will not be exerting political pressure against the advice of the Government’s independent medical specialists, the spokesman said.
Parents campaigning for the medicine say 19 out of 20 posts on the Minister’s Facebook site were polite and did not contain swear words.
Rachelle Haikalis, whose 12 year old Daughter Ellie needs the medication, is outraged and says the #Yestokalydeco campaign is “just a group of parents with kids … it gets no funding from the drug company”.
“To delete our photos of our kids is absolutely disgusting … his Facebook page is open to the public and he’s picking and choosing what the public sees,” she told News Corp Australia.
Glenyce McChroan whose six year old daughter Amelia needs the drug says she was simply trying to post a message asking the minister “have you thought about Kalydeco today, 200 plus Aussies are waiting for it” but it would not show up on the Minister’s Facebook page.
“It’s so frustrating, it feels like an impossible situation, we have been waiting so long for action and one of the only ways we can contact the health minister is deleted. Are we not worth listening to?” she asks.
The medicine was approved for subsidy by the Pharmaceutial Advisory Committee almost eight months ago but the Department of Health is still negotiating with the drug company over price and conditions.
There has been international outrage at the price being charged for the medicine particularly as the basic research for the drug was funded by a $75 million investment from the US charity Cystic Fibrosis Foundation.
Twenty eight doctors and scientists in the United States sent a letter to drug company Vertex calling the price of the medicine “unconscionable”.
Last year drug company Vertex made $371 million from Kalydeco sales, up from $171 million the year before.
Our expert PBAC committee says the drug is only cost effective if it is priced at $60-$80,000 a year and should only attract a higher price if strict pay for performance criteria are met.
The drug company claims it wants to supply the drug in Australia at a price “that is equivalent to the best in the world.”
Kalydeco is now reimbursed in England, Scotland, Wales, Northern Ireland, the Irish Republic, France, Austria, Germany, Canada, Spain, Greece, The Netherlands, Norway and the US.
Cystic fibrosis is a disease affecting around 3,000 Australians and clogs the lungs and other major organs with thick sticky mucus, many victims need lung transplants and spend months at a time on antibiotics.
Kalydeco works on around 200 sufferers who have the G551D gene mutation and targets the underlying cause of the disease, it can improve lung function by around 10 per cent and sees patients gain weight.
Here are some of the deleted posts:
Naomi Payne, a 34-year-old cystic fibrosis sufferer and mother of four, says she had this post removed.
“Peter Dutton, is it that You Don’t care about people with CF Cystic Fibrosis or your hands are tied, what Ever the reasons there is No need to delete peoples messages, these poor people have No one to turn to for Help Except YOU, THE GOVERNMENT, come on, Stand up and at Least give them an Answer that is All they want, stop pussy footing around, and release this Drug Kalydeco Thanks”
Kate Eastwood Connelly had this post removed:
“Glad you are in Glasgow to support our Olympians (sic). However it’s now time to say yes and support those with cystic fibrosis” #yestokalydeco#GoAussies
Alison Piggott had this post removed:
“OK that was why your party was elected. But now get one with being a Health Minister, we are waiting for life saving drugs for our children and my grandchild. Please help us, don’t turn away. 15 July 6.37pm.”
Source: News.com.au