No money for life-saving medicine

Scheduled to have lifesaving medicine today ... 19-year-old Melbourne University student Isabelle Ruiz's family cannot afford the price and a government subsidy row is ongoing. Source: Supplied

ISABELLE Ruiz is due for the next $24,000 dose of a life saving medicine today but she won't get it because her family has run out of money and a government subsidy is still in dispute.

The 19-year-old Melbourne biomedical science student suffers from aHUS — a disease that sees the body's immune system attack major organs and kills 80 per cent of victims within three years.

Isabelle spent more than a month in intensive care over Christmas, needed dialysis and rolling painful plasma changes to keep her alive.

A week after taking the breakthrough medicine she was able to leave hospital but now her access to the drug has been cut off.

"For us it is daunting, we don't know what will come," says her father Jose.

FINAL FREE DOSE: Only medicine keeping Isabelle Ruiz alive

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Pharmaceutical company Alexion that makes Soliris, the $500,000 per patient per year drug Isabelle need to treat aHUS, will today plead with the government to remove restrictions it wants to place on a subsidy for the medicine.

Government experts say some patients may have to come off the therapy once they improve to collect evidence about how long they need to take it.

However, Alexion managing director David Kwasha says patients need the medicine for life and are at risk of dying from a repeat attack if they don't take it continuously. His company is offering to provide compassionate access to 20 Australian patients for three months from Thursday night if the government agrees to waive the condition.

ADVISING DRUG SUBSIDIES: Government sacks over 20 health experts

Awaiting medicine to treat aHUS ... Isabelle Ruiz (right) with sister Sarah in Royal Melbourne Hospital. Source: News Limited

Isabelle's agonising wait comes as the Abbott government sacked more than 20 experts on rare diseases who advised it on medicine subsidies.

The government has said it wants to review the $75 million Life Saving Drugs Program that funds a series of high cost medicines for 228 people with rare diseases.

The expert committees advising the government have saved the taxpayer $50 million in recent years by detailing how to cut the dose of some of these ultra expensive drugs.

And because the government negotiates capped funding deals with the pharmaceutical companies who supply the medicines under the scheme there is always budget certainty about its cost.

Royal Melbourne Hospital's Professor Jeff Szer is one of the experts sacked and he fears for the future of the LSDP, which he says was one of the best parts of Australia's medicine approval system.

"I think we'll be in a situation where it will be very difficult getting anything new funded for rare diseases funded by the government while the review is underway," he said.

Since 2010 no applications for new life saving treatments for rare diseases have been approved despite multiple applications.

In fact two high-cost medicine candidates for the LSDP — the $500,000 per patient per year medicines Soliris and the $300,000 per person per year drug Kalydeco — were not considered for the scheme last year.

Instead they must meet tough conditions before they will be funded under a separate Highly Specialised Drug program.

Health Minister Peter Dutton says the review is "an opportunity to update clinical efficacy and safety data for treatments currently subsidised and incorporate new and emerging evidence".

The disbanding of the expert advisory committees "will allow the small group of experts who work in this area to participate fully in the post-market review of the program and to advocate on behalf of their patients", he says.

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