A Co Down mum whose son requires a new medicine not available due to a pricing deadlock between the NHS and a US drug company is fundraising to buy it through a ‘buyers club’.
Jen Banks, whose two-year-old boy Lorcan requires the cystic fibrosis drug Orkambi, has been calling for health authorities to strike a deal with the company who own the patent for the medication for some time.
Orkambi, a medication that could transform her son’s life, is available in the Republic of Ireland and in Scotland.
But the Boston-based pharmaceutical company Vertex has yet to agree to a price with the NHS.
The Cystic Fibrosis Trust charity said the pricing deadlock leaves well over 100 cystic fibrosis patients in Northern Ireland without access.
Jen Banks and her family have been forced to try and find other ways to get little Lorcan, who has been suffering from a serious chest infection for months, the medicine he needs.
“Parents have had to find an alternative way of getting these drugs for their children and the Cystic Fibrosis Buyers Club have found a generic copy of the drug that individuals can legally import from Argentina,” she said.
“The buyers club is a way of putting pressure on the government, to demonstrate that there are other options available than simply saying ‘Vertex won’t agree a price’. It’s also the only option we have available for Lorcan as someone living in Northern Ireland.”
An online funraising page has raised over £8,000 to help pay for the generic version of the medicine but there is still a significant way to go to reach the £23,000 target.
Meanwhile, Jen Banks’ mother-in-law Jacqueline Maguire has organised a fundraising event to take place at Owenbeg Bowling Club this Friday, at 8pm, with live music and raffle prizes on offer.
Visit uk.gofundme.com/f/look-after-lorcan for more information.
• The Cystic Fibrosis Buyers Club is a collection of patients and parents who have arranged a way to import a generic version of the Orkambi medication from Argentina.
The American company who hold the UK patent for Orkambi does not hold a similar patent in Argentina and, because of this, a company known as Gador are able to make their own version, named Lucaftor, at a manufacturing plant near Buenos Aires.
The Argentinian version has been quality assured by the Argentinian Medicines Regulatory Authority – a body with a good international reputation.
The cheaper Argentinian medicines can be imported legally but even this alternative is highly expensive, although the costs are expected to reduce as more and more parents such as Jen Banks become involved.