The US pharmaceutical company that manufactures Orkambi has provided €15,000 in sponsorship to Cystic Fibrosis Ireland, the charity has confirmed.
In recent months, CF Ireland has lobbied hard for Orkambi to be provided free to cystic fibrosis patients but has also called on the maker of the drug, Vertex Pharmaceuticals, to significantly reduce the price it is seeking from the Health Service Executive.
Talks between Vertex and the HSE on approving the drug for over 500 Irish patients have been adjourned until the new year, with some progress reported by sources close the negotiations.
CF Ireland said the funding received from Vertex was used to support its annual conference “to make it affordable for our hard-pressed families to attend”. Further sponsorship “for modest amounts” was received from three other pharma companies for the same purpose, it said.
The charity said it made a full declaration to the National Centre for Pharmacoeconomics last year when it made a submission on Orkambi. At the time, its total annual income from all sources was €4.3 million, according to chief executive Philip Watt.
The centre, which makes recommendations on drugs on cost-efficiency grounds, found against reimbursement for the treatment.
Orkambi is available in Germany, the US and Austria, but authorities in Ireland, the UK and several other European countries have balked at its high price.
The treatment, which improves lung function and reduces hospitalisation for CF patients, would cost €160,000 per patient annually, or €400 million for the health service over five years, according to its initial price.
The HSE is willing to pay €75 million which would make it the sixth most expensive drug used by the Irish health system.
Prior to the resumption of talks, Minister for Health Simon Harris was highly critical of the price sought by Vertex and claimed CF patients were being used as "pawns".
Orkambi, along with Kalydeco, another groundbreaking but expensive treatment from Vertex, might never had been developed without the support of the American CF Foundation. It ploughed about $150 million (€144 million) into Vertex to support research in exchange for a share of the royalties from any products this came up with. Last year, it sold these royalty rights to an investment company for $3.3 billion.
A spokeswoman for Vertex said it remained in open dialogue with the HSE and talks would resume on January 5th.