Medication

Our family is GRATEFUL to Shire Human Genetics for providing, a treatment that keeps our boys with us longer, as well as to have the medical insurance needed to cover the weekly treatments for Jason & Justin.

Elaprase (idursulfase) is the first prescription medication prescribed for the treatment of Hunter syndrome (Mucopolysaccharidosis II, MPS II or Hunter’s Syndrome), a rare genetic inherited disease which usually leads to premature death.
Elaprase is a new molecular entity, which is an active ingredient never before marketed in the United States. Elaprase was designated as an orphan product by the FDA. Orphan products, such as Elaprase, are generally developed to treat rare diseases or conditions that affect fewer than 200,000 people in the United States. Hunter Syndrome is so rare, there are less than 350 known cases which are being treated in the United States today, 6 of which reside right here in New Jersey.

ELAPRASE Enzyme Replacement Therapy is considered the one of the World’s Most Expensive medical treatments out today, with an estimated cost reaching approximately $300,000 – $500,000 per patient, per year depending upon the plan participant’s weight.

The average wholesale price (AWP) of a single use vial of ELAPRASE is $3,285.00.  For each patient, this results in a projected cost of approximately $6,570.00 per week, per child. Our boys use 5 viles each week.