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Post by ozboy on Feb 5, 2017 5:10:54 GMT -5
AUSTRALIA’S youngest cystic fibrosis sufferers will this week get a massive reprieve when the government lists a life changing medication on the pharmaceutical benefits scheme.
News Corp Australia understands Health Minister Greg Hunt will this week approve the drug Kalydeco on the PBS for 2-5 year-olds.
The medication will be listed from May with the government in negotiations with drug manufacturer Vertex about how to best to ease the burden on families until then.
Families will only have to pay as low as $6.30 per script as opposed to $300,000 a year to access the drug.
The listing comes after News Corp Australia started making calls about the issue amid increasing pressure on the government from sufferers and the federal opposition.
It will mean the nation’s littlest sufferers of the life-shortening chronic illness will have a shot at a normal life with the drug one of the first in the world to address the underlying causes of CF rather than simply its symptoms.
Sufferers will go from taking 60 to 80 tablets a day in the worst circumstances, to as few as 10 tablets a day.
However, more than 1000 Australians over the age of 12 with a different mutation of the illness will still be left waiting for their shot at a normal life with the drug Orkambi yet to be listed on the PBS.
s-headed-for-the-pbs/news-story/d319fbe3bd9f6697663a2b8c05aa5f3d
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Post by gerald on Feb 5, 2017 19:07:24 GMT -5
Unfortunately even in Canada most provinces don't cover it. I believe Ontario is the only one that does.
I was just reading a bit more on this, I had not realized that cystic Fibrosis had different causes that that this drug
only works for abou 4%. However, the changes fo rthos 4% appear to be miraculous.
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Post by jarca on Feb 5, 2017 20:58:49 GMT -5
what a godsend for those that can be cured with this drug!
I didn't realize that CF had so many strains either.
I find that it has been approved in USA, for children over 6 years old, but I can't find anything that says younger can take it. (sadly)
The cost is absurd! and the "best" i could find was an 80% off coupon, but that still wouldn't put it in most people's price range.
How wonderful for those children in australia that it not only available to younger kids, but at a price that is wonderful!
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Post by ozboy on Feb 5, 2017 23:58:21 GMT -5
KALYDECO is the Drug that has been approved now.......
The key points that need to be made are:
1. There is nothing like Kalydeco… it is a drug that treats the disease, not the symptoms
2. Kalydeco slows down lung damage resulting in better health outcomes across a child’s life
3. Overseas studies show 50 mmol/litre reduction in sweat chloride
4. Every day of delay, young lungs are experiencing irreparable damage
5. 200 Australians over the age of 6 years are currently are benefitting from KALYDECO. Let’s expand it by 30 people and support little Australians between the ages of 2-5 years.
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ORKAMBI...is now awaiting approval to go on the PBS List.........All these treatments are very expensive if not subsidised by the Government..
Cystic Fibrosis Australia can confirm the U.S. Food and Drug Administration (FDA) has approved Orkambi, the combination cystic fibrosis (CF) drug containing 400mg of lumacaftor and 250mg of ivacaftor (daily dose) for people who are 12 years of age and living with the F508del homozygous gene mutation.
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