QUEEN’S PARK – Tim Hudak, MPP for Niagara West-Glanbrook, called on Minister of Health, David Caplan, in the Ontario Legislature today to immediately fund an essential health treatment for 11-year-old Andrew Lanese of Fonthill.

Andrew has been living with Mucopolysaccharidosis Type II, or Hunter syndrome, since he was an infant. Hunter syndrome is a rare progressive degenerative disease that, if left untreated, will lead to damaged tissue and organ functions and even premature death. There is just one treatment for Hunter syndrome, an enzyme replacement therapy called Elaphrase.

“While British Columbia and Alberta cover the costs of Elaphrase through their public drug program, Ontario still does not,” Hudak said in a statement delivered today in the Legislature.

Through active fundraising efforts, overwhelming community support and significant sacrifices, the Lanese family raised enough money to start Andrew on the therapy in August this year; however they will run our of money for the $6,300 a week treatment next month.

The Ministry of Health recently began to cover the cost of Elaphrase on a case by case basis, but has so far rejected Andrew as a candidate for public funding. There are only six people in all of Ontario with a diagnosed case of Hunter syndrome.

“I call on the Health Minister today to treat everyone living with Hunter syndrome in Ontario with the same respect,” Hudak said, “and act now to fund Elaphrase for everyone, but especially Andrew Lanese.”

The Lanese family is hosting a benefit at Club Roma in St. Catharines tomorrow to help replenish the fund for Andrew’s treatment. Anyone interested in making a donation can please call Tony Bozza at 905-227-1521 or email tbozza@cogeco.ca.

Hudak’s draft statement is copied below for your information and use:

Statement 1 – Andrew Lanese
Tim Hudak, MPP
November 20, 2008

Andrew Lanese – a courageous 11-year-old boy in my riding – has been living with a progressive degenerative disease called Hunter syndrome since he was an infant.

If left untreated, Andrew faces further damage to his tissue and organ functions and even premature death.

There is just ONE medication available to help Andrew’s condition called Elaphrase.

And while British Columbia and Alberta cover the costs of Elaphrase through their public drug program, Ontario still does not.

Through active fundraising efforts, overwhelming community support and significant sacrifices, the Lanese family raised enough money to start Andrew on the therapy this year.

The results have been remarkable. Andrew’s motor skills have noticeably improved and he can now walk greater distances on his own.

Unfortunately, the money raised for Andrew’s treatment will run out next month.

In fact, the Lanese family is hosting a benefit in St. Catharines tomorrow to help replenish the fund for Andrew’s treatment.

Anyone interested in making a donation can please call 905-227-1521 or email tbozza@cogeco.ca.

I understand the Health Minister actually recently approved funding for some Hunter syndrome patients – there are only six in all of Ontario – but not Andrew.

I call on the Health Minister today to treat everyone living with Hunter syndrome in Ontario with the same respect and act NOW to fund Elaphrase for Andrew Lanese.