RARE DISEASE: Gaylene Gray of Maroon suffers from a muscle degeneration disorder called Pompe disease.
RARE DISEASE: Gaylene Gray of Maroon suffers from a muscle degeneration disorder called Pompe disease.

Disease sufferer faces massive medicine bill

IF a government decision doesn't go her way next month Gaylene Gray will need $500,000 a year to stay on her feet.

The Maroon mother of two is one of only 27 people in the country to suffer from Pompe disease, which is slowly weakening her muscles.

For the past three years Mrs Gray has been receiving myozyme, which normally costs around $500,000, through the producer's charitable access scheme.

However, the company, Genzyme, will no longer provide the drug on the charitable scheme and Ms Gray and other sufferers hope the Government pharmaceutical benefit advisory council will decide next month to include it in the PBS scheme.

"Without myozyme my muscles will slowly deteriorate and I'll eventually need a wheelchair to get around and maybe even a respirator to breathe at night," she said.

"Pompe diseases causes muscles to slowly lose strength.

"I used to do a lot of bushwalking and hiking, and now I'm just not able to.

"I can't walk up most steps any more because my legs just aren't strong enough to do that."

Mrs Gray said she couldn't understand why the drug was provided by governments in 50 other countries but not Australia.

Pompe Facts

  • Pompe disease is an hereditary disorder which causes muscle and nerve damage throughout the body.
  • A deficiency of an enzyme prevents the body from breaking down glycogen in the muscles.
  • Drugs for infant-onset Pompe disease are currently provided but not for late-onset cases.


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