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Why is Pharmac playing fast and loose with facts and figures

NZORD - the New Zealand Organisation for Rare Disorders

For immediate release.

Why is Pharmac playing fast and loose with facts and figures for vital life-saving treatments?

NZORD, the New Zealand Organisation for Rare Disorders, and a group of patient advocacy organisations, are calling on Pharmac to withdraw one of its current consultations because of significant errors and omissions in the document. They are also calling on government to remove such decisions about orphan medicines from Pharmac’s responsibility, as they have shown they cannot effectively and fairly manage such decisions for very small patient groups, under their current framework.

Pharmac has issued a consultation on the new medicine Eculizumab (Soliris) for the treatment of Paroxysmal Nocturnal Haemoglobinuria (PNH) with the expressed intention of declining to fund the treatment. Here’s the link to Pharmac’s document. More information is available from the website of the PNH Support Association and on the NZORD website.

“When issues of such crucial importance to the lives of New Zealand patients are being publicly debated, we should be able to rely on Pharmac to provide accurate and reliable information to help guide responses from the community. This should also apply to instances where Pharmac are making decisions internally, without public scrutiny, so their board is accurately informed” says John Forman, executive director of the NZ Organisation for Rare Disorders.

“Unfortunately there are significant errors in the PNH consultation document which combine to make the total costs of this treatment appear much higher than they are actually likely to be. Pharmac has exaggerated by about 50% the number of patients likely to need treatment, and they have exaggerated the price of treatment by referring to the “list price” rather than a discounted rate discussed with them in confidence by the medicine supplier,” Forman says. “The combined effect of these errors leads to Pharmac suggesting a total cost that is probably more than double the real cost of treating those PNH patients who would meet criteria identified by Pharmac’s own specialist advisory committee (PTAC), at a negotiated price.”

“This is not the first time Pharmac have used misleading information in a crucial discussion about a specialised medicine,” says Forman. “In 2011 Pharmac staff reported to their board that the likely prevalence in New Zealand of adults with Pompe disease was up to 100, when in fact their figures were seriously out. At the time there were only about 6 patients diagnosed with that disease and several years later we have barely reached double figures for adults with Pompe disease. Pharmac misunderstood the literature on prevalence of this disease. When challenged on these figures Pharmac staff had the gall to report to their board that their information was “factually accurate”, and persuaded the board of Pharmac to decline our appeal for funding to treat Pompe disease.”

Another serious omission from the PNH consultation document relates to their reliance on PTAC advice about the medicine. PTAC noted that the Scottish Medicines Consortium had recommended against funding this medicine. But they omitted to note that the Scottish government had subsequently set aside a special fund to ensure access to treatments like Soliris, precisely because of the unfairness and inequities associated with assessing medicines for rare and common diseases in the same process. This information will have been well known to PTAC and Pharmac because the Scottish government’s decision was announced in January this year, several months before PTAC and Pharmac reconsidered this matter and produced their recommendations and proposals in this consultation.

“For Pharmac to put up one argument that weakens the case for funding the medicine, but to then not note an even stronger argument from the same source in favour of funding, really does point to issues of either competence or integrity in Pharmac’s senior officials,” says Forman.

Last but certainly not least, the patient advocacy groups are very concerned about the lack of any commentary or analysis about moral considerations like fairness and equity in Pharmac’s consultation document. Forman points to the Medicines Strategy, endorsed by government, which states that fairness, equity and community values are principles that should be woven into decision processes right through our medicine system, as they are throughout the rest of our health system. But the groups note that Pharmac has been very resistant to including such considerations, and has been hostile at times to requests that such matters be taken into account. “Faced with stubborn refusal to include such matters in their decisions, how can New Zealand patients have any confidence that there is any fairness in the process?” asks Forman.

About the patient advocacy groups.
NZORD is working closely with the Cystic Fibrosis Association of NZ, Muscular Dystrophy Association of NZ, Lysosomal Diseases NZ, the NZ LAM Trust, and the PNH Support Association of NZ, in this current campaign about access to specialised medicines.
NZORD is also working with a broader group, the Access to Medicines Coalition, on a range of issues aimed at improving decision making for medicines, providing for formal patient input into decision processes, recognition of the patients’ right to health, and ensuring fairer decision making through specific consideration of equity and moral dimensions, including balancing the inherent disadvantage faced by those in need of orphan drugs for very rare diseases.


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