The Government is being called upon to finally approve groundbreaking therapies for cystic fibrosis.
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 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.
Cystic Fibrosis Ireland (CFI) is now calling on the Government to conclude these discussions and give ‘swift approval' for the drug.
The voluntary organisation 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.
CFI made its call at the launch of Cystic Fibrosis National Awareness Week, which will run from April 10-16.
The latest figures from the Cystic Fibrosis Registry of Ireland show that in 2015, there were 1,219 people with CF in Ireland, with an average age of 19 years.
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.
Figures show that during 2015, almost 30% of people with cystic fibrosis were admitted to hospital with lung problems. Among these, almost half were admitted at least two times.
According to CFI chief executive, Philip Watt, the benefits of Orkambi and Kalydeco are well known and include increasing lung function, slowing down the progression of the disease and decreasing hospitalisations.
"CFI is heartened by recent comments by the Minister for Health, Simon Harris, that progress is being made in discussions on the approval of new therapies for people with cystic fibrosis.
"We agree that a fair deal should be struck and that is why we are calling on all sides to show generosity of spirit in quickly finalising a mutually satisfactory arrangement. Patients have already been waiting nine months for a positive decision, time that is precious to them. The delays must stop now," he commented.
During Cystic Fibrosis National Awareness Week, CFI will hold its flagship fundraising appeal - 65 Roses Day - on April 13. On this day, people can buy a purple rose for €2 or donate online at www.65rosesday.ie.
CFI is hoping to raise €100,000 and this money will be spent in a number of areas, including the development of dedicated healthcare facilities, research and counselling.
For more information on 65 Roses Day, click here