advocacy brief graphic
advocacy brief graphic
20 Aug
Advocacy

Advocacy update - August 2024

20 August 2024

Here's a full update on all things advocacy.

 

More Funding for Pharmac

The Government’s May 2024 Budget provided for an additional $1.77 billion of funding for Pharmac over the next four years. This funding was enough to fund existing and planned medicines but was not enough to provide the 13 cancer medicines that the Government had promised to fund through the reinstatement of the $5 prescription charge.

However, on  24 June 2024, the Government announced that a further $604 million would be provided to Pharmac. The funding will provide up to 26 new cancer medicines as part of an overall package of up to 54 more new medicines.

You can read the statement from the Minister of Health and Associate Minister of Health (Pharmac) announcing the additional funding here:

https://www.beehive.govt.nz/release/transformative-investment-cancer-treatments-and-more-new-medicines

 

Pharmac Letter of Expectations

On 16 July 2024, the Hon. David Seymour, Associate Minister of Health (Pharmac), released the Letter of Expectations to the Chair of Pharmac,  Hon Paula Bennett, setting out what Pharmac is expected to focus on during the 2024/25 year.

The Minister’s letter sets out clear expectations for significant change at Pharmac. These include the need to improve organisational culture, to ensure that lived experience is incorporated into the assessment process, to improve its engagement with consumers, and update its decision-making and evaluation models to include the wider government and societal impacts of funding medicines.

You can read the Minister’s statement here:

https://www.beehive.govt.nz/release/expectations-set-improved-medicines-access

You can read the Letter of Expectations here:

https://www.beehive.govt.nz/release/expectations-set-improved-medicines-access

 

Pharmac Funding of CGMs, insulin pumps and consumables

There continues to be delay to Pharmac’s implementation of its proposal to fund continuous glucose monitors (CGMs), insulin pumps, and consumables for people with Type 1 diabetes, including those with cystic fibrosis related diabetes (CFRD).

The proposal was to have been implemented from 1 July  2024 but, following public consultation, Pharmac announced that it needed more time to consider feedback.

An update from Pharmac on 22 July 2024 advised that it was in the process of finalising its proposal to take to the Pharmac Board for a decision. That Board meeting is expected to take place by the end of 2024 but no date for this has been advised.

You can read the update from Pharmac here:

https://pharmac.govt.nz/news-and-resources/news/cgms

 

 

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Rare Disorders Strategy

The Ministry of Health has released the Rare Disorders Strategy. The Strategy sets out the direction for the health system and provides a framework and long-term priorities that will guide entities in improving health and wellbeing for people living with rare disorders over the decade 2024 to 2034.

You can read the Rare Disorders Strategy here:

https://www.health.govt.nz/our-work/diseases-and-conditions/rare-disorders-strategy

 

Access to CFTR Modulator Therapies

Trikafta for 2-5 year olds

Vertex applied to Pharmac in February 2024 for the extension of access to Trikafta for 2-5 year olds. Pharmac has now confirmed that the application will be considered by its Respiratory Advisory Committee at its meeting at the end of August. The Committee’s recommendations are expected to be available in November with the publication of the record of its meeting.

Additional Mutations responsive to Trikafta

Vertex presented data at the European Cystic Fibrosis Conference in Glasgow in June 2024 indicating the responsiveness to Trikafta of rare CF mutations that are not currently approved by the US FDA, and not therefore part of Pharmac’s current eligibility criteria.

Eligibility for Trikafta includes the ability for clinicians to apply for Trikafta for rare mutations under the Named Patient Pharmaceutical Assessment (NPPA) scheme where there is “evidence to demonstrate Trikafta works based on reasonable extrapolation.” 

We would therefore encourage anyone with who has not yet been able to access a modulator therapy to talk their CF clinician to see if an application under the NPPA scheme may be possible using the data presented at the Glasgow conference. Your clinician can contact Vertex for further information.

You can read the statement from Vertex here:

https://investors.vrtx.com/news-releases/news-release-details/vertex-presents-new-data-european-cystic-fibrosis-conference

Information on eligibility for Trikafta, including the link to the NPPA scheme, can be found at:

https://pharmac.govt.nz/news-and-resources/consultations-and-decisions/2023-03-07-decision-to-fund-elexacaftor-with-tezacaftor-and-ivacaftor-trikafta-for-people-with-cystic-fibrosis