Mark Tami (Alyn and Deeside) (Lab)

- Hansard - - Excerpts

The petition states:

The Petition of residents of the Alyn and Deeside constituency,

Declares that Morquio syndrome (also known as MPS IV) is a rare genetic disease; further that Elosulfase, a drug to treat the syndrome, has recently been approved by the European Medicines Agency following positive results in the final stages of clinical trials; further that the drug (in the form of weekly enzyme replacement treatment) improves sufferers’ energy levels and stamina and therefore increases their independence, further that the effects of the drug are hugely beneficial not only to the individuals who have Morquio syndrome but also to their families; further that funding for the newly licensed enzyme replacement therapy to treat Morquio syndrome is unlikely to be approved due to cost saving; and further that the Petitioners believe that the consequences of patients, including children, such as Gracie in Buckley, not receiving this drug are unbearable.

The Petitioners therefore request that the House of Commons urges the Department of Health to ensure that individuals who have Morquio syndrome are given free access at home to enzyme replacement therapy for the treatment of the syndrome.

And the Petitioners remain, etc.

[P001444]