xyrem

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Sodium oxybate

Resource article
sodium oxybate, sedative, medication, drug, xyrem

Sodium oxybate is a powerful sedative that is sold under the brand name Xyrem

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Xyrem - Urgent Yellow Card Request

Blog post
5 February 2020
xyrem, yellow card, UCB cares

Recently we have been seeing ongoing issues with the seals of Xyrem bottles and also the quality of the inserts. 

This has been reported to UCB Pharma and they are investigating but after discussion with them, we have agreed that we should encourage anyone affected by this to use either the MHRA Yellow Card system and/or the UCB Cares telephone line to report their concerns.

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NHS deny access to Wakix®

Blog post
14 September 2017
Wakix, xyrem, Pitolisant, sodium oxybate, Lancet, NHS, NETAG, NTAG, Orphan Drug Status

NHS Northern Treatment Advisory Group seeks to deny access to Wakix® in error filled evidence summary.

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Is Wakix® the new Xyrem® ?

Blog post
Matt O'Neill
25 June 2017
Wakix, xyrem, Pitolisant, sodium oxybate, Lancet, NHS, IFR, orphan drug

Is Wakix® the new Xyrem® ?

I do not ask this because of any similarities between what these two medications can do for people with narcolepsy but for other, far more frustrating reasons. Like Xyrem®, Wakix® has orphan drug status, its effects are not well understood, it is perceived as expensive and NHS adoption is slow because it is relatively new, despite the relevant NICE guidelines.

On May 23rd, 2016, I wrote the following paragraph:

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What is a “generic” medicine?

Resource article
drug price, sodium oxybate, xyrem, modafinil, Pitolisant, orphan drug

When a new medicine is first developed and approved for use, it is usually only available from one manufacturer. Normally, that is the company that invented it and that obtained the first authorisation for its use, after steering the drug through the complex and expensive process of clinical trials.

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Success in Devon!

Blog post
27 April 2017
sodium oxybate, xyrem

Last Tuesday, 18th April 2017 Matt O’Neill and Peter Todd completed an overnight “dash” to Devon where they joined a patient on Wednesday morning to present at a “Treatment Decision Review (TDR) Panel” in an attempt to reverse a decision by an “Individual Funding Request” (IFR) Panel to refuse funding for treatment with sodium oxybate for an adult with severe narcolepsy.

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What happens when you don’t provide us with the medicine we need

Blog post
Matt O'Neill
20 April 2017
sodium oxybate, xyrem, cataplexy

Following a decision on Tuesday NOT to approve the use of sodium oxybate for an adult with severe narcolepsy & cataplexy due to both benefit & cost issues, we drove to Devon to attend a Treatment Decision Review Panel at Exeter Town Hall.

I would like you all of you with narcolepsy out there, including your friends and family to share this picture because it shows the impact of the decision taken for the individual.

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Misconception or Inequality and Discrimination?

Blog post
17 April 2017
sodium oxybate, xyrem, NHS England, IFR, Individual Funding Request

Ongoing work to remove the barriers to access to sodium oxybate for management of narcolepsy and cataplexy.

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