Submission to Pharmac on funding access criteria for special foods

The need to focus on reasonable decisions related to particular patient groups – May 2012

Pharmac recently called for submissions regarding proposals to amend funding access criteria for some nutritional products. The proposed changes can be accessed at this link. After consultation with a number of support groups likely to be affected by this change, and other recent changes in subsidy of special foods, NZORD prepared this submission with special emphasis on the needs of patients with epidermolysis bullosa, and cystic fibrosis. Here is the submission we made:

Of the three main points in your proposal, we are most interested in number 2 which is the addition of some specific conditions to the list for special authority access to standard supplements.

But rather than discuss the rationale of adding them to this list, which we do not oppose, instead we wish to address the decision made in the recent past to no longer subsidise prepared liquid supplements for patients with certain conditions, including those mentioned in the proposed amendment, leaving them only with the option of a powdered form of dietary supplements being subsidised.

We believe that this decision is unreasonable, given the practical issues outlined to you by the Cystic Fibrosis Association of New Zealand, and DEBRA New Zealand representing patients with epidermolysis bullosa. These issues have been outlined in previous submissions and/or other communications to Pharmac, and again in relation to this particular consultation. We will not repeat the specifics of those submissions as you have them, or will have in submissions from those groups, but instead we address the principles which we think you should follow in relation to these products and the subsidy of them.

Pharmac’s overall objective in achieving the best health outcomes within budget (section 47 (a) NZ PH&D Act) is qualified by the phrase “reasonably achievable”.

NZORD believes the removal of funded access to prepared liquid forms of these special foods previously enjoyed by patients with EB and cystic fibrosis, and replacement of subsidy for powdered forms only, does not pass a test of reasonableness in respect of these patients.

Submissions made by these groups and by other professionals indicate potentially serious consequences from the lack of availability of liquid preparations. In fact the submission from the DEBRA support group indicates possibly life-threatening complications which makes use of the powdered form an unacceptably high risk for EB patients, and therefore the removal of subsidy from the liquid form an unreasonable decision for Pharmac to make.

Past written responses from Pharmac to the Cystic Fibrosis Association seem to indicate that Pharmac considers their concerns at the change to be largely a matter of convenience issues only, with an implication that the powdered product can be reasonably managed by patients/families without undue difficulty – a view that NZORD believes does not pass the test of reasonableness when all the factors and information are considered in respect of both groups of patients.

By contrast, management of the powdered form of supplements in a rest home setting where staff are present at all times and able to mix the supplements for immediate consumption, does seem a reasonable step in all the usual circumstances we can contemplate. But the wish to save funds from subsidy for such patients should not lead to a spill-over into a one-size-fits-all approach to funded access to needed dietary products.

NZORD believes that among the matters for your consideration in deciding on subsidy for these products, are the Medicine Strategy stated outcomes of Access to the medicines New Zealanders need, Optimal use, and the “safe” arm of the Quality, safe and effective statement. The principles mentioned in that strategy that flow from those outcomes indicate numerous ways in which the concerns of these groups should be taken seriously and addressed appropriately. Among these are equity, affordability, efficacy, and fairness.

Within the need to manage the overall budget and achieve the best health outcomes reasonably achievable, it is important that Pharmac also sticks to its wider public law obligations in respect of consultation and the need to take views expressed seriously and respond appropriately. We believe a more appropriate response to this issue from Pharmac would be to reinstate subsidised access to the liquid form for these selected patient groups, and in any other patient groups where similar significant practical issues and risks of poor outcomes arise.

John Forman
Executive Director, NZORD