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13 Feb
Advocacy

Kalydeco campaign update

We have some exciting news about the Kalydeco campaign – the PHARMAC Rare Disorders Subcommittee has recommended Kalydeco be funded.

In a statement released by PHARMAC, CEO Sarah Fitt says,

"The Rare Disorders Subcommittee recommended Kalydeco be funded (with a medium priority) for the treatment of cystic fibrosis in patients with a G551D mutation. The Subcommittee noted that there is a high health need for this group of people, a lack of disease-modifying treatment options, and moderate quality evidence of health.

You can read the Subcommittee’s full discussion on our website.

The next step for the funding application is for it to be reviewed by our main body of expert clinical advisors, the Pharmacology and Therapeutics Advisory Committee (PTAC) next week at its February 2019 meeting. Following this, PHARMAC will consider these funding applications using our Factors for Consideration framework, and will rank it against other funding applications we have received.

This funding application was one of 13 funding applications (for ten medicines) assessed at the Subcommittee’s meeting. The Subcommittee recommended that four medicines be funded, and five be declined for funding. One medicine was deferred to be considered at a later date.

Following the announcement, Jane Bollard, Chief Executive of Cystic Fibrosis released a statement:

“We are delighted to see the Rare Disorders Subcommittee’s recommendation for Kalydeco to be funded. It is a big step forward in our campaign for Kalydeco, and opens up negotiations for Orkambi and other precision medicines not available in New Zealand.

Cystic Fibrosis NZ remains committed to bringing access to the life-changing medicines to those Kiwis that can benefit without further delay. From here the recommendation will be considered by PTAC next week, and we’ll shortly share some ways in which you can help get Kalydeco over the line.”

It was fantastic to see in the minutes of its meeting, the Rare Disorders Subcommittee noted “a number of submissions recently provided to PHARMAC from clinicians and members of the public in support of the funding application. The Subcommittee noted the high health need of people with cystic fibrosis and their families/caregivers, and the feedback highlighting the effect that cystic fibrosis can have on people with the disease, as well as their families, caregivers, and friends.”

This shows that all our actions, both big and small, added up to something that had a big impact. So, a huge thank you to everyone who has taken part in the campaign.

Advocacy can be a bit of a long slog, with long periods feeling like nothing is happening, but this shows that our combined efforts can, and will, bring about important change. Let's continue building on this development to get Kalydeco funded, as well as many more needed changes.

Our next steps

Your ongoing support and help is needed to ensure Kalydeco is funded and our voice is still heard.

Before the committee and PHARMAC Board consider whether to fund Kalydeco we want to do one final push.

In the next few days a template email will be available to download which you can use to show PHARMAC how incredibly important the funding of Kalydeco is. Help us continue to spread the word by sharing with your friends, family and network to encourage everyone to show their support.

We'll continue to keep you updated as things progress but if you have any questions, please get in touch with our advocate Lisa. You can email her: lisawoods81@hotmail.com or give her a call on 021 1228 273.

Find out more information about the Kalydeco campaign