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PBS red tape denies Don a quality of life

Posted on July 20, 2011

A SUNRAYSIA man suffering from two serious medical conditions says he is being denied life-changing medical treatment by the Federal Government.

IRRITATION: Don Timpano displays the severity of his psoriasis.

Don Timpano has severe psoriasis, causing itching so bad the only way to relieve it is to scratch it incessantly, at times resorting to nail heads and other sharp objects, often leading to bleeding.

His condition is so bad it’s been described as among the worst 10 cases seen by some experts, and has a significant impact on his quality of life.

“I have to change my sheets every day because if I don’t I get very itchy and start to bleed,” he said.

“I can only shave once a week, as I’ve got it on my face as well.

“It’s also impacted on my personal life as it’s prevented me from having any type of relationship with a partner.”

Don also has to deal with the attention his condition attracts – it’s very visible.

He has tried numerous treatments to combat the problem over the years, the most recent of which, a cream-based treatment, is no longer effective.

However, there is one treatment which has proven successful in other patients, and could be Don’s last hope. It’s an intravenously administered drug called Remicade.

Remicade is available on the Pharmaceutical Benefits Scheme (PBS), but in order to be eligible, Don needs to have tried four other drugs specified by the PBS, showing at least three of them are ineffective.

The problem is that Don is also an epileptic, taking more than 20 tablets a day to prevent fitting.

He says the four drugs he must trial pose the dangerous risk of countering his epilepsy medication, which would not only jeopardise his health, but also his independence, as he could lose his driver’s licence.

For the past four years Don has been fighting to access Remicade through the PBS. It would cost about $30,000 per year if he purchased the drug outside the scheme, which would simply be unaffordable for him.

However, despite letters of recommendation from several doctors, including Associate Professor Peter Foley at the University of Melbourne’s Department of Medicine (Dermatology), medical specialists in Sunraysia and Members of Parliament on both sides of the Murray River, he has been denied the drug through the PBS.

Don said that numerous attempts have been made to contact Federal Health Minister Nicola Roxon, all of which have been ignored.

Meanwhile, as he continues to battle the Federal Government’s PBS, his psoriasis continues to worsen, now spreading to his eyes and nose.

In a recent letter sent to Federal Opposition Leader Tony Abbott, Prime Minster Julia Gillard and Federal Minister for Health and Ageing Nicola Roxon, Associate Professor Foley once again put Don’s case forward.

“It is the view of both the dermatology team that have been involved in his management, and the physician looking after his epilepsy, that the highest quality of care would be obtained if he was to not have to risk a course of therapy with methotrexate and or cyclosporin,” he wrote.

Methotrexate and Cyclosporin are two of the four drugs Don is required to trial before he would be eligible for Remicade under the PBS.

However, despite Don’s repeated pleas, and the letters of recommendation from his supporters, there appears little movement in the PBS for special cases, despite the severe impact on some patients’ quality of life.

Don said that after five years fighting to access the drug he feels he has little option but to take his battle directly to Canberra.

“I just wish the Government… I wish Nicola Roxon would hear my side. I want them to feel what I’m going through so they would understand,” he said this week.

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