sodium oxybate

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NHS deny access to Wakix®

Blog post
14 September 2017

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
25 June 2017

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

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

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
20 April 2017

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

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

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European Patient Advisory Group - new clinical trial

Blog post
17 March 2017

This year we have a great story to kick-off European Narcolepsy Day!

Narcolepsy UK have facilitated a meeting to initiate the creation of a European Patient Advisory Group to work closely with pharmaceutical companies on research and clinical trials of new medicines for Narcolepsy.

Even collectively, we would struggle to fund research but this way, we hope that we can provide our knowledge and assistance to make things happen faster.

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Clinical trial - single dose sodium oxybate

Resource article

Flamel (Part of the Avadel Pharmaceuticals), are looking for subjects to participate in their clinical trial evaluating their once nightly sodium oxybate for the treatment of EDS and cataplexy in narcolepsy.

FT218 is dosed once at bedtime unlike the currently marketed formulation of sodium oxybate (Xyrem®) which needs to be taken twice nightly, once at bedtime and then again 2.5 – 4 hours later.

Patients with a diagnosis of narcolepsy who meet the study criteria may be eligible to participate in our clinical trial.

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