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Riluzole supply issue

The MND Association has made the Department of Health and Social Care (DHSC) and manufacturers aware of the issues being raised with us by our members.

Manufacturers are working to speed up and increase production. In addition Madeleine Moon MP, the Chair of the All Party Parliamentary Group on MND, has tabled a question in Parliament asking what actions the Department of Health and Social Care is taking to address the current supply shortage. Responses to parliamentary questions usually take around 10 days although DHSC has made an official statement which you can see below. We will continue to keep the pressure on.

We understand that any issues should be temporary and pharmacies should now have access to stock.

It is important to know that riluzole is a NICE approved drug and people with MND are legally entitled to this. If you are turned away at the pharmacy as the ‘generic’ riluzole product is out of stock, your prescriber can make a prescription for a branded product e.g. Rilutek or Teglutik. Riluzole is the same whatever the brand prescribed, though Teglutik is a liquid form which could be a change for some people. It is best to ask for a generic prescription of riluzole which will maximise choice for pharmacies when sourcing the drug.

Whilst our MND Connect team are unable to offer any further information on where to source riluzole, please do contact them as it will enable us to monitor the situation.

The team can be contacted on 0808 802 6262 or via mndconnect@mndassociation.org

Statement from DHSC:

‘The Department of Health and Social Care were informed of a short-term supply issue affecting Riluzole 50mg film-coated tablets as one of the main suppliers experienced manufacturing delays, this resulted in them being out of stock during the month of February. Consequently, this caused an unexpected increase in demand on other suppliers which resulted in limited supplies during February/ March. The affected supplier is now back in stock and currently does not anticipate any issues going forward. Other suppliers of Riluzole 50mg film-coated tablets have confirmed they currently have stock and further deliveries are planned over the next few months. Currently sufficient supplies are available to meet historic demand. We are working closely with all of the manufacturers of Riluzole 50mg tablets and will be closely monitoring the situation.’

09/04/2019

Updated on 26/04/2019

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