CLLANZ Submission on Proposed Changes to the Options for Investment List
Chronic Lymphocytic Leukaemia Advocates of New Zealand (CLLANZ) has submitted formal feedback on Pharmac’s proposal to decline a number of medical funding applications currently listed on the Options for Investment (OFI) list. Representing the interests of CLL patients, their caregivers, and specialist haematologists, our submission raises serious concerns about the potential removal of medicines that have been clinically recommended but remain unfunded.
While we acknowledge the realities of prioritisation within the funding system, we strongly oppose the blanket removal of lower-ranked medicines without transparent consultation. Our submission calls for a more robust and inclusive process – one that involves clinical sub-committees and patient advocacy groups before any decisions are made.
We invite you to read our full submission below:
“On behalf of Chronic Lymphocytic Leukaemia Advocates of New Zealand (CLLANZ) we are submitting on the proposal to decline some medical funding applications on the Options for Investment List (OFI). We do so on behalf of CLL patients, their caregivers, and haematologists with a specialist interest in this field.
Whilst we acknowledge that there will always be some aspect of “prioritising” and “rationing” when it comes to deciding which medicines to fund, we are completely opposed to the idea that a significant number of medicines currently ranked near the bottom of the list should be eliminated arbitrarily and en masse as proposed.
Drugs are placed on the OFI after being highly recommended by clinical sub-committees. We recognise that, in some cases, a particular medicine may be superseded by an improved product. However, removal of any drug from the OFI should involve these two crucial steps:
- discussions with the clinical sub-committee that made the initial recommendation; and
- a wider phase of consultation with patient and consumer groups including publication of the discussions with the clinical sub-committees.
This approach will only be successful, however, if Pharmac is more transparent with information regarding the drugs that are in these lower rankings, how long they have been on the list and what their exact rankings are.
There may be valid reasons why a medicine should remain on the list and it is essential that any group with a particular interest in a drug is given the opportunity to express its views on the matter before any decisions are made. This may even open up the possibility that a drug company would be willing to bundle in a low-ranked drug as part of a package of drugs under negotiation.
We would be pleased to discuss any aspect of this submission with you.”
Ruth Spearing Rob Crozier
Chair Trustee
CLLANZ CLLANZ