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Advocacy Update

15 October 2024

CGMs and insulin pumps now funded

A very welcome decision from Pharmac means that, from 1 October 2024, continuous glucose monitors (CGMs), insulin pumps, and consumables will be funded for people with insulin deficiency caused by CF. 

People with CF who have diabetes can now access standalone CGMs, insulin pumps, and CGMs for use with insulin pumps to enable automated insulin delivery. Arrangements have also been put in place for those already using an insulin pump to transition to funded options. CFNZ has put together a summary of Pharmac’s arrangements and eligibility criteria. You can access that summary here:

 https://www.cfnz.org.nz/assets/7b97cac761/CGM-and-insulin-pump-funding-1.pdf

 

CFTR Modulator Therapies

Trikafta® for 2-5 year olds

Vertex Pharmaceuticals (Vertex) applied to Pharmac in February 2024 for the extension of access to Trikafta® for 2-5 year olds. CFNZ understands that the application was considered at Pharmac’s Respiratory Advisory Committee on 28 August 2024.  Pharmac has advised that it expects the Committee’s recommendations to be available in November with the publication of the record of its meeting.

When Pharmac assessed the extension of Kalydeco® to very young children, its clinical advice suggested that treatment with ivacaftor (Kalydeco®) significantly slows the progression of cystic fibrosis and leads to reductions in pulmonary exacerbations and hospital admissions for this patient group. CFNZ looks forward to a positive recommendation from the Respiratory Advisory Committee with respect to the extension of Trikafta® to 2-5 year olds.    

North American Cystic Fibrosis Conference 2024

Vertex announced on 26 September 2024 advised that several presentations using clinical trial and real world evidence were to be made at the North American Cystic Fibrosis Conference held in Boston, USA on 26-28 September.  The presentations covered the long-term benefits of Trikafta®, the long-term benefits of early initiation of Kalydeco®, and the first accepted medical data presentation of the Phase 3 data from the investigational once daily vanzacaftor/tezacaftor/deutivacaftor (vanza triple) therapy.

You can read Vertex’s news release here:

Vertex Highlights First Oral Presentation of Phase 3 Clinical Data of the Vanza Triple and New Data on Long-Term Impact of TRIKAFTA® at the North American Cystic Fibrosis Conference | Vertex Pharmaceuticals (vrtx.com)

 

Buller Declaration

The Buller Declaration on the state of the New Zealand health system was launched by Dr Malcolm Mulholland of Patient Voice Aotearoa on the West Coast on 28 September 2024.  The Declaration seeks to draw attention to the state of the health system and to the difficulties particularly faced by those in isolated and rural areas in getting access to health care. The Declaration is touring New Zealand and can be signed by anyone wishing to support the petition. You can read more about the Declaration here:  https://www.mylifematters.org.nz/

CFNZ has consistently sought to highlight the need to ensure that everyone with CF has access to high quality health services wherever they live. Comprehensive standards of care and treatment provided consistently across New Zealand, supported by skilled staff, services, facilities, up-to-date medicines, and equipment are essential for improving and maintaining the health of people with CF, and reducing health disparities.