Cystic Fibrosis Ireland (CFI) has expressed concern about a lack of contact between the manufacturers of two groundbreaking drugs and the HSE.

Last year, the National Centre for Pharmacoeconomics (NCPE), which is responsible for assessing medicines and medical technologies to see whether they are cost effective, recommended that the drug, Orkambi, should not be funded by the HSE.

Orkambi is a drug that could benefit around 500 people with cystic fibrosis in Ireland, specifically those over the age of 12 with a specific genetic mutation.

Since the decision by the NCPE, the Department of Health has been in discussions with the drug's manufacturer, Vertex Pharmaceuticals, in the hopes of reaching an agreement on price.

CFI is also seeking the extension of Kalydeco therapy to children aged between two and five years. This drug also benefits patients with a specific mutation, but is currently only available for those aged six and older. It is also made by Vertex.

However, the voluntary organisation has expressed concern about a recent statement by Vertex Pharmaceuticals, which states that there has been no contact between it and the HSE in recent weeks, ‘despite repeated assurances by the Minister for Health and An Taoiseach that a deal on new drug therapies is imminent'.

"On behalf of our patients, CFI calls on Minister Harris and the Government to do what they have promised to do - to make an agreement for the provision of Orkambi and Kalydeco for the 600 patients that would benefit from these two vital drug therapies," the organisation said.

It pointed out that the negotiations for these drugs ‘are now more than nine months old'.

"There have been repeated assurances given in recent weeks which CFI has welcomed. Cystic fibrosis patients would be very grateful for the promised announcement on a final agreement," it added.

Cystic fibrosis is a hereditary disease that primarily affects the lungs and digestive system. It is caused by a defective gene, which along with its protein product, causes the body to produce unusually thick and sticky mucous.

This mucous clogs the lungs, leading to potentially life-threatening lung infections. Ireland has the highest prevalence of the disease in the developed world.

Cystic Fibrosis National Awareness Week is due to run from April 10-16. This event will include CFI's flagship fundraising appeal - 65 Roses Day - on April 13. For more information, click here