Scott Morrison (Cook, Liberal Party) Share this | Hansard source

to move:

That the House:

(1)

notes that Epidermolysis Bullosa (EB) is a rare genetic condition characterised by skin fragility and blister formation, which is incurable and in its most severe forms can be fatal in infancy and childhood;

(2)

notes that children afflicted by EB are known as “butterfly children” and are required to pierce, drain and dress their blisters each day in an endless routine that lasts up to three hours in the most severe cases;

(3)

notes there are currently 229 patients formally diagnosed and registered on the Australasian EB Registry and that based on international estimates there may be up to 1,000 people affected by this condition in Australia, of whom 100-150 have the most severe form;

(4)

acknowledges the support and assistance provided to sufferers and their families by DebRA Australia, the national Dystrophic Epidermolysis Bullosa research association;

(5)

recognises that families with a child suffering from EB have problems accessing dressings because of expense or availability from the public system, and in the more severe cases families must spend up to $5,300 per month on dressings; and

(6)

calls on the Australian Government to establish a 12 month trial program, managed by the Department of Health and Ageing in partnership with DebRA, to:

(a)

fund delivery of dressings directly to patients currently registered on the Australasian EB registry from suppliers identified through a public tender process;

(b)

provide access to a dedicated nurse in each state and territory for patients suffering from EB; and

(c)

review the program upon conclusion, with a view to establishing a permanent scheme.

See this speech in context