Pharmac rejects call for change on rare diseases
Pharmac has rejected suggestions it needs new decision-making criteria when deciding whether to fund treatments for rare diseases.
Many submitters who commented on a consultation document published by Pharmac as part of a review of how it decides which medicines to fund considered current criteria adversely affected the chances of high-cost drugs being funded.
Those submitters believed more weighting should be given to patients with rare diseases, the proposal document said.
"Many submitters also emphasised the need for flexibility in cases of rare and complex conditions, particularly in situations where patients face a poor prognosis for survival or prolonged pain and suffering without access to a particular treatment or device."
The proposal said a pharmaceutical was not disadvantaged in the current assessment process if it treated a rare condition.
"We consider there is nothing about the situations described by submitters that warrant the inclusion of a new factor for consideration related to rarity," the proposal said.
"Pharmac's assessment currently determines the value offered by a medicine relative to its cost, regardless of the size of the population group that stands to benefit.
"If the population in which the medicine is effective is small ... the value and cost is assessed for this patient group."
Pharmac is now calling for submissions on its proposed new framework for deciding which medicines to fund.
Chief executive Steffan Crausaz said the government agency was aiming to more clearly demonstrate what it should take into account when making funding decisions.
"We hope this will result in people better understanding our decisions," he said.
The proposed new format showed that Pharmac looked at the impact of decisions across four aspects – need, suitability, benefits and costs. Each of those aspects was considered in relation to the patient, the treatment, and the health sector.
A review was needed as Pharmac's role was expanding to include hospital medicines, vaccines and eventually hospital medical devices.
The proposal said some submitters also felt the fiscal impact of funding decisions outweighed the consideration of other criteria. Many felt current criteria did not reflect fairness or community values.
Pharmac was proposing to present the factors being considered in funding decisions within a decision-making matrix.
Among other advantages, that would help demonstrate the interconnectedness of all the factors and the need to use judgment to consider those impacts against each other, the proposal said.
Consultation on the draft decision-making framework will close at Easter.
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