News from Adelaide Now May 9, 2007

Lifeline for rare disease
SUFFERERS of a rare and terminal genetic disease have been offered a lifeline with the allocation of $16.4 million in the federal Budget towards a revolutionary treatment.
The government last night announced it would fund the drug Aldurazyme under the Life Saving Drugs Program for the treatment of Mucopolysaccharidosis Type I (MPS I).
MPS I is a very rare, genetic disease that begins from childhood.
It is caused by the lack of an enzyme and is usually diagnosed in early infancy, causing a wide range of physical and intellectual problems, including heart, lung, liver and kidney damage.
MPS I children normally only live to 8-10 years of age.
Aldurazyme replaces the missing enzyme, slowing progression of the disease and dramatically improving quality of life and extending life expectancy.
However, the life-long therapy costs more than $100,000 a year and many families have only been able to gain access to the drug through a charitable program run by the company that developed it.
MPS Australia Society vice president Vanessa Ede-Scott congratulated the government on its decision to fund the drug and said it ensured patients had ongoing access to the essential therapy.
But she said it was also important for other MPS diseases, as it showed that the government recognised and understood the importance of funding therapies for the conditions.
"With therapies to treat MPS VI and MPS II expected over the next 12 months, we hope last night's announcement is an indication of the government's support for MPS patients and their families," she said.
 

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