24 January 2020
We’re thrilled to share that Pharmac has reached a provisional agreement with medicine supplier Vertex to fund Kalydeco (Ivacaftor) for New Zealanders with cystic fibrosis.
If feedback from a consultation process with health professionals is supportive and the proposal approved, patients could get access to the drug from as early as March 1st.
“This is a monumental day for the CF community and marks the culmination of many years of lobbying for access to innovative medicines,” says Jane Bollard, Cystic Fibrosis NZ Chief Executive.
“I want to thank everyone who has been a part of this campaign for their persistence and determination to keep on fighting. A special thanks to Eddie and Emma Porter of the Kalydeco for Kiwis advocacy group for their work on the campaign".
Kalydeco is the first medication that fixes the underlying cystic fibrosis defect, essentially turning off cystic fibrosis. Kalydeco represents a breakthrough in cystic fibrosis research; current medications only treat the symptoms.
There are around 30 people with the cystic fibrosis gene type that will be able to benefit from Kalydeco.
PHARMAC is proposing full subsidy with no restrictions on age. Children under the age of six can have the oral formulation via Section 29 until the formulation is registered by Medsafe.
The funding is still subject to a consultation, which has gone out today to health professionals. If the feedback from the consultation is supportive and the proposal is approved, then people could be prescribed Kalydeco from 1 March this year.
“With a provisional agreement secured between Pharmac and Vertex, it now opens the door to negotiate a deal for Orkambi, Symdeko, and ultimately the new Trikafta”, Jane continues.
Cystic Fibrosis NZ will be submitting a letter of support for the funding of Kalydeco on behalf of the CF community. We urge that if anyone wishes to include comments for recommendation to please email Jane Bollard at firstname.lastname@example.org.
Notes to editors
For interviews please contact:
Jane Bollard, Chief Executive, Cystic Fibrosis NZ - 021 283 0051
Eddie Porter, Spokesperson, Kalydeco for Kiwis – 022 638 4738
For further information or imagery, please contact:
Laura Huet| +64 021 195 5787 | email@example.com
About Cystic Fibrosis NZ
Cystic Fibrosis NZ is the only charity dedicated to supporting and improving quality of life for people with CF and their families.
Established in 1968 as a volunteer support group for parents with a newly diagnosed child, we dedicate ourselves to shaping a brighter future for everyone with CF. We do this through local family and individual support by our team of social workers, by covering the cost of essential medical equipment, providing organ transplant assistance, information packs, welfare assistance and many other means of support. We also fund CF research and advocate on behalf of the community for better access to services and care.
About cystic fibrosis
Cystic fibrosis (CF) is a serious illness that affects lungs and digestion. It is the most common life-threatening genetic disorder affecting Kiwis. It is caused by a faulty gene that has been passed down from a baby's mum and dad and is usually diagnosed soon after birth. One in 25 people carry the faulty gene that causes it, often without even knowing.
There are over 500 Kiwis with CF. In NZ around 1 in every 5000 babies is born with the condition, and it’s usually diagnosed through the heel prick test as part of new-born screening.
People with CF secrete thick, sticky mucus in their bodies. The mucus in their lungs traps bacteria which can results in chronic infections, meaning that people with CF struggle with reduced lung function, progressive lung damage and possible respiratory failure. In the digestive system CF reduces the amount of insulin produced and stops the digestive enzymes that aid digestion, leading to poor growth and physical weakness.
Treatment includes physiotherapy throughout the day to dislodge the mucus, taking nebulised treatments each day and many medications and supplements. As the disorder progresses, a lung transplant can extend and improve quality of life, however it is a last resort and many become too weak whilst waiting.
One of the most striking features of CF is cross infection. Two people with the condition should never be in close contact as their lungs harbour specific bacteria that are a risk to someone else with the condition. This means no group support and the added stress of having to physically avoid others with CF.
For further information please visit: www.cfnz.org.nz