Govt policy on new wonder drug sparks outrage



By David Mendes


Sufferers of chronic myeloid leukaemia are urging the Federal Government to reverse its decision not to subsidise a life-saving drug called Glevic.

Until now, most of the approximately 1,500 Australians diagnosed with this debilitating illness every year have died within five years if they have not successfully undergone a bone marrow transplant. Only one in five sufferers is suitable for such a transplant, which has a death rate of 20%. Additionally, a mere 20% of patients can tolerate the usual treatment of Interferon for extended periods.

However, the new drug is proving remarkably effective, and during recent clinical trials in Australia, about nine out of 10 patients in the chronic stage who took Glevic went into remission.

Royal Melbourne Hospital head of bone marrow transplants Associate Professor Jeff Szer describes the drug as a “magic bullet”. He describes it as such because it targets the underlying cause of leukaemia and attacks only cancer cells, unlike traditional chemotherapy and radiation treatments.

“This is a specifically targeted molecule getting at the abnormal gene product responsible for the leukaemia, so as a ‘magic bullet’, it was designed to do a specific task, which is related to the genetics of this genetic malignancy, and it does so.”

Last year, the Pharmaceutical Benefits Advisory Committee recommended and approved funding for patients suffering from the more advanced stages of the disease. Somewhat surprisingly, however, it did not extend the same benefits to people suffering from the earliest stage.

Bill Sutton, whose wife has the disease, has been lobbying government to sponsor the drug. He says those in charge are refusing to do so for two reasons.

“They are holding back because of the cost of the drug and insufficient data. We’re talking about a relatively small number of patients, and the cost – when balanced against the cost of Interferon, the resultant hospital visits, side effects and treatment of those side effects – is worth it.”

Patients with the chronic form of the disease currently have to pay about $55,000 annually for the treatment. Because they couldn’t afford it, Nicholas Poulos’s family had to raise funds from the public to cover the cost. His wife, Mandy, says they had no other choice because Nick is intolerant to Interferon and they couldn’t find a suitable bone marrow donor. She believes the government’s rationale for not sponsoring Glevic is foolish.

“This is a life-threatening situation. In my husband’s case, he’s 30 years of age. He has no other option but to be on Glevic at the moment and money should not be an issue when you’re in a life-threatening situation. I guess you think of people who are taking drugs and they’re given needles and they’re thinking of having these injecting rooms and paying for that. That’s a choice, whereas he didn’t ask to be given this disease, and to have to worry about coming up with $1,000 a week – it’s just ridiculous.”

Fifty-one year-old Andrew Jenkins also has the chronic form of the disease. He’s a single parent with two children to support and says if the government doesn’t begin subsidising the drug soon, he will have to sell the family home.

“I’ll be looking at selling my house, but that would only be an interim measure, because $55,000 a year wouldn’t take too long to soak up, unfortunately. Fifty-five thousand dollars is not a great expense for the government, considering they’re spending hundreds of millions of dollars on other drugs – cholesterol and smoking, sexual-impotence drugs – that are all covered, but yet we seem to develop a cancer-curing drug and yet they can’t seem to cover it. I find that a travesty.”

SBS has contacted the Pharmaceutical Benefits Advisory Committee on numerous occasions, but all officials have refused to comment publicly on the issue so far.