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Reduce the supply cost of INVERTASE a life changing drug for patients with CSID

Submitted on Friday 21st June 2019

Rejected on Monday 22nd July 2019

Current status: Rejected

Rejection code: irrelevant (see below for details)

Petition Action

Reduce the supply cost of INVERTASE a life changing drug for patients with CSID

Petition Details

INVERTASE is just a food grade yeast. It costs £60 to produce. It is sold to the NHS for between £280 and £500 per 60ml bottle (smaller than a teaspoon). No research into the medecine or the condition it treats (CSID) is carried out to justify this profit.

Additional Information

CSID (Congenital Sucraid - Isomaltase Deficiency) affects 1 in 500 to 1 in 2000 people. Frequently misdiagnosed as less than 22% of medics know it (*based on a recent poll carried out by M4RD). The body lacks enzymes to digest sugar or starch, it is a condition for life that the patient will NEVER grow out of. Its symptoms include: vomiting, diarrhoea, extreme bloating, burns on bottom, exhaustion, failure to thrive. INVERTASE is LIFE CHANGING and means the patient can lead a more normal life.


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This petition was rejected

The Government e-Petitions Team gave the following reason:

We can only accept petitions which call for actions that are the responsibility of the UK Government or Parliament.

It's not the responsibility of the UK Government or Parliament to reduce the costs of particular medicines.

You could start a new petition calling for an action that is the responsibility of the UK Government or Parliament. For example, a petition calling for the Government to fund research into the treatment of CSID, if that's what you'd like to happen.

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