I rise to support the member for Mayo and, importantly, the need to continue research

into cystic fibrosis and its possible cure. Cystic fibrosis affects thousands of Australians every day, and currently

there is no cure. The average life expectancy of someone living with cystic fibrosis is just 37 years. It is a

debilitating condition that affects many parts of the body, including the lungs, liver, pancreas, reproductive organs

and sweat glands. A person born with cystic fibrosis undergoes constant medical treatment and physiotherapy

for their entire life. Management and treatment of cystic fibrosis is lifelong, ongoing and relentless. A person

with cystic fibrosis may consume up to 40 capsules daily to help digest food, and they may need to do up to

three hours of airway clearance each day.

In Australia, one in 2,500 babies are born with cystic fibrosis—that is one every four days. It is the most common

life-threatening, regressive, genetic condition affecting Australian children. On average, one in 25 people carry

the cystic fibrosis gene—most of whom are unaware they are carriers, with no symptoms apparent. Unfortunately,

cases of cystic fibrosis are on the rise, with a 45 per cent increase of cases in Queenslanders over the past decade.

In my own electorate of Oxley, there are currently 100 people who live every day with cystic fibrosis.

Unfortunately, figures revealed by the National Health and Medical Research Council showed that funding of

research for cystic fibrosis is on the decline: from a peak of $4.6 million in 2014 down to just $2.4 million last

year. We must do more to combat this growing disease. Today, I call on the health minister to increase funding

so that research can continue, as it must. It is unacceptable that, whilst the rate of Australians living with cystic

fibrosis continues to rise, the level of funding into research to find a cure is on the decline. We must ensure we

are at least matching the pace at which cystic fibrosis is growing with funding to see that a cure is found.

As the member for Mayo outlined in her speech a short time ago, there is something else that we can do to help

the thousands of people living with cystic fibrosis. Many sufferers and families have been calling for the drug

Orkambi to be placed on the PBS. This is used to treat the most common mutation of cystic fibrosis and, if

approved, Orkambi would be available to over 1,000 Australians aged 12 and over who are currently suffering

from this life-shortening, cruel condition. It will principally treat those who are homozygous and have two copies

of the mutation in the CFTR gene. This is the most common mutation in people with cystic fibrosis, with around

half of cystic fibrosis patients in Australia being homozygous. The Australian Therapeutic Goods Administration

observed in 2016 that patients who are homozygous 'have a high unmet medical need and none of the currently

approved treatments for this population treat the underlying cause of cystic fibrosis'.

Orkambi aims to treat the underlying cause in these patients by increasing the amount and function of the

defective CFTR protein. However, despite three attempts, most recently on 18 August this year, Orkambi is yet

to receive approval and be placed on the PBS, due largely to the exorbitant asking price of the manufacturer

and pharmaceutical company, Vertex. I note that the Labor shadow minister for health and member for Ballarat

has already stated how extremely frustrating this is. Indeed, Labor have been encouraging the government to

undertake work with the manufacturer to increase the likelihood of a positive PBAC recommendation and wrote

to the government offering our full support on this. Even the chair of the PBAC, Professor Andrew Wilson,

conceded this month that large drug companies are not coming to the table with fair offers to begin with. Earlier

reports have suggested that the company is seeking nearly three-quarters of a billion dollars to list Orkambi on the

PBS for around 1,000 patients. The fact is that, without listing on the PBS, Orkambi will cost sufferers $250,000

a year, or more than $20,000 a month, to access, putting it out of the reach of most of the sickest Australians.

We must do all we can to assist people suffering from cystic fibrosis, but this does not mean succumbing to the

outlandish demands of multinational drug companies with billion-dollar revenues. I call on the company and the

government to continue negotiations and find a resolution as quickly as possible