PBAC defends position on $480,000 a year drug

Soliris, made by Alexion, treats atypical haemolytic uraemic syndrome (aHUS), an extremely rare but life-threatening disease that causes inflammation of blood vessels and the formation of blood clots throughout the body.

The unusually public row erupted last week after Health Minister Peter Dutton announced that Cabinet approved $64 million to fund the drug on the PBS over the next four years.

However, Alexion is refusing to agree to a government condition that patients stop using the drug after 12 months if a patient has achieved remission.

It was “ethically and clinically” inappropriate to order the cessation of treatment, it said, accusing the government of imposing “inhumane” treatment conditions on aHUS patients.

“The government has indicated that it intends to proceed with a listing recommendation for Soliris that would require all aHUS patients, even those who are benefiting the most, to mandatorily