People with CF have been represented at a number of Pharmac Consumer Voice meetings around NZ to look how to improve patient representation for its medicine and device-funding decisions.

Last Friday two CFNZ representatives attended the Pharmac meeting in Wellington for consumer groups where we had a chance to talk to Pharmac Chief Executive Sarah Fitt about Kalydeco. An earlier meeting in Auckland, CFNZ Chair Jane Drum and also a father of a baby with CF also took the chance to speak to Sarah. There is new long-term data available about the benefits of Kalydeco which CFNZ hopes will lead to new consideration for this medicine for a rare form of CF. Currently, the Australian medicines funding authority is considering the medication for the F508del gene, Orkambi, for the fourth time and it's hoped Vertex will be willing negotiators.

A wide range of consumer groups attended the meetings including Diabetes New Zealand, Plunket, the Lung Foundation, Grey Power, women's groups, and the NZ Organisation for Rare Disorders. We were seated in groups with a Pharmac representative on each table and asked to name three priorities for improvements. There were common themes throughout the groups:

• Patient representation at the level of drug-funding decisions such as what happens in Scotland and Australia.
• For high-users of the health system to be represented on the Consumer Advisory Committee.
• For Pharmac to consult closer with patient groups when introducing changes to medicines.

At an earlier Pharmac Community Conversations meeting in Auckland attended by 30 people, CFNZ raised the following points:

• There seemed to be a barrier for pharma to engage with Pharmac.
• There also seems to be a disconnect between the Pharmacology and Therapeutic Advisory Committee (PTAC) Respiratory Committee and CF specialists.
• The need for two consumer representatives on PTAC – it was considered a bit intimidating for one person.
• Concern that Pharmac takes the cheapest option but not necessarily the best – this was in regards to nebuliser compressors.
• The idea of a group of patients trialling new medicines or devices if Pharmac decides to change suppliers (there’ve been concerns with the generic Ventolin product).

Anyone can provide feedback for the review and there is a three-question survey available to fill out at the Pharmac website. There is also the chance to email further feedback and CFNZ will be making a submission. The deadline for this is 6 July.