Kalydeco is an important treatment for many people with cystic fibrosis, and the evidence behind it is strong and unequivocal.
Cystic Fibrosis NZ and Kalydeco for Kiwis ran a joint campaign to get Kalydeco publicly funded in NZ.
Cystic Fibrosis NZ and Kalydeco for Kiwis are running a joint campaign to get Kalydeco publicly funded in NZ.
Early September PHARMAC called for applications from suppliers of medicines for rare disorders. From the applications, we expect PHARMAC to announce funding for medicines for rare disorders. Vertex, Kalydeco's manufacturer, put in an application for Kalydeco.
We'll be talking with politicians (including the Minister of Health) and PHARMAC about why it's important to fund Kalydeco. But we think a key part is showing public support for funding Kalydeco. This is why the awareness campaign is so important. It means we need to go out in the community and get as many people as possible participating in the campaign and showing their support.
We expect PHARMAC to announce their decision early 2019, so we'll be running the campaign from late Sept/early October until we hear the decision. We're going push as hard as possible to get Kalydeco funded through this process with PHARMAC, but if the decision is not what we want we're not going to stop there, we'll keep pushing until we see Kalydeco publicly funded.
Kalydeco is a type of medicine used to treat a strand of cystic fibrosis called G551D.
Kalydeco is the first medication that fixes the underlying cystic fibrosis defect, essentially turning off cystic fibrosis. Kalydeco represents a major breakthrough in cystic fibrosis research; current medications only treat the symptoms.
“Kalydeco has been hailed as a miracle drug – and with good reason. It has massive health benefits. Current life expectancy for those with cystic fibrosis is 37 years, but this drastically improves with Kalydeco. Every day that Kalydeco remains unfunded in New Zealand, irreversible lung damage is occurring” says Cass Byrnes, Cystic Fibrosis NZ's Medical Spokesperson.
The evidence backing Kalydeco is unequivocal. New Zealand is the only country in the OECD (with a significant cystic fibrosis population) that has not funded Kalydeco for those with G551D cystic fibrosis.
We need as many people as possible to join and help us get Kalydeco funded.
We’ve launched a public awareness campaign to raise awareness of Kalydeco and we’re encouraging people to write to PHARMAC in support of the application for Kalydeco. To raise awareness we're also asking people to help spread the word in any way they can in their community, for example meeting with their electorate MP, writing an article for the local paper, talking to local organisations etc.
You can help by:
David Clark, Minister of Health
We've put together letter templates, key points and other hints and tips to help you out. This advocacy toolkit is designed to help you take action.
If you have any feedback about the toolkit, or other things that would help you, let us know!
It's becoming more important to know your genetic typing as more precision medications are being developed that target specific faulty genes. We know from the PORT CF data registry not all PWCF know their genetic type.
"I encourage all PWCF to ask their consultants for another blood test when they have their annual blood tests, which can be done through the clinic you attend. Most adults will have had their genes tested when they were infants when the CF gene panel was very limited. Since then, many more CF genes have been identified and the CF panel has 50 common CF genes which means the lab is now able to identify most CF genes," says Cystic Fibrosis Nurse Specialist Jan Tate.
Knowing your genetics could open up opportunities for different or better treatments as time progresses. If you have any questions please contact your fieldworker or CF nurse.