Rare disease medicine changes offer clarity

Proposed changes to the provision of medicines for rare diseases should bring greater certainty for people with these conditions, the Consumers Health Forum said today.

The Health Minister, Greg Hunt, in announcing the Government’s response to a review of the Life Saving Drugs Program, says patients will be better supported by the proposed new process for listing drugs on the program.

“We welcome these changes which include expanding criteria for the consideration of funding for medicines which both extend a patient’s life and improve quality of life for the patient,” the CEO of the Consumers Health Forum, Leanne Wells, said.

“The proposed changes broadly align with what consumer groups said they wanted in the consultations which the Consumers Health Forum held to advise the review.

“Ensuring access to very expensive medicines for very small numbers of patients with rare and disabling conditions is a mark of the strength of Australia’s pharmaceutical funding system.

“We are pleased to see that the new criteria will include provision of medicines offering noticeable decrease in disability as a result of the drugs. This addresses improving quality of life as well as extending it

“The challenges of reaching the right decisions in administering these medicines require strong and informed consumer advice.

“It is vital that consumers with lived experience and/or their carers are on the proposed expert panel to address the quality of life issue,” Ms Wells said.



Media contact

Mark Metherell

T:  02 6273 5444 
M: 0429 111 986