Cystic fibrosis patient forced to halve dosage of essential drug because of cost Alex Parker and her grandfather Ken Parker at Parliament House in Canberra. Ken Parker pays $300,000.00 a year for his granddaughter's medicine. CRIPPLED by the $300,000 a year costs, photographer Alex Parker has been forced to halve her dose of the cystic fibrosis drug that keeps her alive. Bureaucrats last week delayed a decision on whether to subsidise the medicine and Alex is now risking the return of thick sticky mucus which clogs her organs and shortens her life. The 24-year-old's generous grandfather Ken Parker is paying for the medicine but after forking out $300,000 already Alex says she's "getting desperate." Crucial cystic fibrosis drug delayed Drug hope for cystic fibrosis "We're not buying any more and I don't know when it will be subsidised so I'm trying to cover my bases so I can work," she says. There is no evidence about what will happen if Alex takes only half the recommended dose of the drug Kalydeco. Cystic fibrosis patients have an average life expectancy of just 37 and the new drug is expected to provide a significant extension to Alex's life. Her grandfather Ken is adamant she will not go off the medication. "Alex is very concerned from a family point of view about the amount of money being spent," he says. The former businessman says he has been paying $65,000 for the medicine every 90 days and had hoped it would be subsidised by the government by now. Around 200 cystic fibrosis patients in Australia who have a certain gene could benefit from the drug which would cost the government around $60 million a year. This could be more than met by the $230 million a year savings the government will make when it cuts the price it pays for the nation's biggest selling medicine - cholesterol lowering atorvastatin - in December. Yesterday News Corporation reported that Amelia McChroan from Bendigo had hoped to receive Kalydeco as a sixth birthday present next month but her family cannot afford it unless it is subsidised. Cystic Fibrosis Australia is demanding the government call a special out-of-session sitting of the Pharmaceutical Benefits Advisory Committee to reconsider the issue and is making the subsidy an election issue. Ms Parker will travel to Canberra for next week's health debate between the major parties to confront them over the subsidy.