Twitter reinstates account of NI mum fighting for son’s cystic fibrosis drug

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Social media giant Twitter has reversed a decision to suspend the account of a Northern Ireland mum campaigning for access to cystic fibrosis drugs for her son.

Twitter’s decision followed almost immediately after a query from the News Letter.

Jen Banks, whose two-year-old son Lorcan requires a breakthrough form of medication known as Orkambi that isn’t available in Northern Ireland, has been using Twitter to raise the issue directly with authorities.

Orkambi, which is available in 17 countries including the Republic of Ireland and Scotland, is at the middle of a pricing dispute between the company which holds the patent and UK health bosses.

Jen Banks has been campaigning for the Department of Health at Stormont to make the drug available here for some time and has used Twitter to lobby on her son’s behalf.

She said she was “so disappointed” to discover her account had been unexpectedly shut down by the multi-billion dollar technology company.

“I was so disappointed to discover my Twitter account had been suspended, and I couldn’t really understand why,” she said.

“It is such a great way to communicate directly with those in power. You can’t just ring them up on the phone but you can send them a tweet.”

The News Letter wrote to Twitter on Friday morning, querying their decision to close the account, which had by then been suspended for some time. Within a matter of hours, it had been reinstated.

DUP MP Jim Shannon, a backer of the campaign to make Orkambi available in Northern Ireland, said: “I know Jen Banks. I know the desperation that she has as a mother. I know the condition of her son. I know the need we have to make the drug Orkambi available to make lives better. We need action.”

Orkambi is a precision drug that can be used to treat around 50% of cystic fibrosis patients in the UK – including more than 100 in Northern Ireland.

It was licensed for use in Europe in November 2015 but NHS England and US company Vertex Pharmaceuticals have yet to reach an agreement on price.