LEANNE DEL TOSO
Leanne Del Toso was only 19 when the little things became too difficult.
Shopping, walking to her car or climbing stairs left her feeling week. Several
months, blood tests and doctors later, she was told she had chronic inflammatory
demyelinating polyneuropathy (CIDP).
Ms Del Toso, 23, had to stop playing basketball, and ``even things like going
out clubbing with friends just stopped. It was too hard". She was put on
Intragam P and now spends five hours hooked up to the drip every six weeks.
``I'm now able to work and can handle working for six weeks without getting
tired," she says.
The receptionist hopes she will eventually be strong enough to be a fitness
instructor. But that won't happen if she is denied access to treatment. ``It's
not a very good feeling knowing that someone else has the right to decide
whether my condition is life-threatening and they get to decide whether it's
important for me to have Intragam," she says.
Despite his 84 years, James Gerrand is healthy and active. He swims every
week, drives, and spends time with his five children and seven grandchildren -
thanks to Intragam P.
``One thing I can't do is catch my 10-year-old grandson," he says. Mr
Gerrand was diagnosed with CIDP 12 years ago and is treated with Intragam P
every fortnight. But he fears for the quality of his life without it. ``My legs
will get paralysed, and then my arms and hands will be affected and I won't be
able to drive, and I'd be a burden on my wife, who's also 84," he says.
Mr Gerrand founded the Inflammatory Neuropathy Support Group of Victoria,
which has 200 members. He has written to the federal and state health ministers,
Tony Abbott and Bronwyn Pike, urging them to make Sandoglobulin available
immediately. ``I'm very healthy, and I reckon I can last for another 10 years
quite well," he says. ``When I was a boy, if you lived for 70 years that was
regarded as a feat, but these days it's getting up to 90 or so."
It started with numbness and tingling in his hands, then spread to his feet,
until finally tests revealed that John Burke had the uncommon neurological
disorder CIDP. Mr Burke, 51, was diagnosed five years ago, and progressed from
discomfort to a disability. He began taking Intragam P, and was able to function
``reasonably normally". But in 2001, he voluntarily stopped taking the
treatment. Nine weeks later, he was back in hospital. ``I couldn't walk,
couldn't transfer from bed to chair, and it took approximately 12 months to
fully recover," he says.
Mr Burke, who says he relies on Intragam P to live a normal life, was
receiving treatment every month, but now fears his condition is not considered
``life-threatening" to continue to qualify for treatment. ``It's a question
I've been too afraid to ask," he says. ``I expect to be significantly disabled
within a short period of time."