PHARMAC not funding some treatments for rare, life-threatening diseases: bosentan as an example

Pulmonary arterial hypertension is a devastating and fatal disease for which effective therapies have been developed over the last 10 years. Unfortunately these therapies are expensive. The New Zealand health system which has no discernible strategy to deal with the issue of high-cost treatments has, through its agent, PHARMAC, failed to either clearly state that they recognise the need to fund treatment for this condition or to refuse all effective treatments and defend such a decision in the public arena. Bosentan, an endothelin antagonist, improves symptoms and extends life substantially in this condition, but access has been near impossible as it is expensive. PHARMAC have for the last 18 months refused to fund any effective therapy through the Community Exceptional Circumstances Panel. However, clinicians can approach the patient's DHB to fund treatment and yet the treatment offered and the duration is decided by the Hospital Exceptional Circumstances Panel of PHARMAC. Power without either clinical or fiscal responsibility?