watched it back last night pam well done the point got across very well from both of ye as well as the professor
Pam has been admitted to the hospital Hopefully she is better soon, can people please ensure no one bothers her for tickets in the mean time thanks
Well done to Pam and the Irish Lung Fibrosis Association - it looks like Pirfenidone will be made available. http://www.irishtimes.com/news/heal...-disease-drug-despite-cost-concerns-1.1423500 Minister for Health James Reilly is expected to approve the drug pirfenidone for suffers of a rare form of lung disease despite concerns over its cost. Officials who have examined the case for making the drug available for reimbursement under the medical card schemes are understood to have recommended approval to HSE director designate Tony O’Brien, who will shortly submit this decision to the Minister for approval. Reilly urged to approve costly lung disease drug This follows intensive price negotiations with the manufacturer of the drug, InterMune Inc, in recent weeks, following an earlier decision by the National Centre for Pharmacoeconomics (NCPE) not to recommend approval on cost grounds. Pirfenidone is used to treat people with idiopathic pulmonary fibrosis, a rare condition for which no treatment currently exists. High cost In March, the NCPE said it could not recommend approval of pirfenidone because of its high cost (€32,700 per patient per year), the significant impact it would have on the health budget and the absence of long-term clinical data on its effectiveness. NCPE clinical director Dr Michael Barry said last week the negotiations had resulted in a reduction in price and it now appeared the drug would get the go-ahead. The Irish Lung Fibrosis Association, representing several hundred patients with the condition, had called on the Government to approve funding for pirfenidone, saying it is the first and only drug proven to prolong life expectancy in patients with IPF. Without access to the drug, patients with IPF may not live long enough to receive a lung transplant, the association said. The drug also offers a lifeline to IPF patients who are not eligible for a transplant, by interrupting the production of cells and molecules involved in the formation of scar tissue in the lungs and improving progression-free survival, it said. Number of patients The number of patients anticipated to receive the drug is 97 in year one, rising to 207 after five years. The cost originally quoted for pirfenidone was up to three times the threshold set by the NCPE for approving reimbursement under the medical card scheme. The centre acknowledged it has been shown to have a “modest but measurable” effect on slowing decline in lung function in mild to moderate IPF. Earlier this year, Dr Reilly intervened to grant approval for the cystic fibrosis drug Kalydeco, which had been rejected by the NCPE on cost-effectiveness grounds. Dr Reilly ordered his officials to approve Kalydeco, which will cost €220 million over 10 years. Fibrosis, the development of scar tissue in the lungs, causes the lungs to become stiff, preventing the effective transfer of oxygen from the blood to the lungs. IPF is more common in men than women, between 60-80 years of age. Patients develop extreme breathlessness, fatigue, coughs and ultimately respiratory failure. This requires those living with IPF to rely on oxygen therapy 24 hours a day.
I have not been on line much of late, I have had a very bad few months, thanks for all the help I had with pirfenidone, it really was a great help, just after it was approved back in June, I know this May sound crazy but I was feeling so unwell I asked to go off the drug for a month to see how I felt, It took me two weeks to decide that I had made a big mistake I could not sleep with the dry cough, I was getting panic attacks I could not breath and fatigue was unreal, I am back on it, but changing other medication has really helped I have lost just over two stone but still have to loose more for transplant There was great news from the mater hospital this week they have achieved 25 lung transplants almost double to any other year, so that's brilliant news. I was asked to write my story regarding liverpool trips I have it nearly finished so I will post it up later on this week. Don't forget I have renewed 4 of my cards they are available to reliable lads anytime they are linked together. Take care
From Pams FB "I am sooooo mad today letter from HSE my medical has been Cancelled worked all my life with terminal illness, I am going to fight this, If I have to sit in the office I will have every newspaper and TV invited I will" Think this will be a new version of cyber terrorism if this isnt fixed promptly!
and you see how some cnuts get everything - fcuk me livid over this and then you see what others can get that are raping this country dry
Ah man thats a complete joke and its happening to loads of people around the country that really really needs them. That James Reilly and his civil servant big wigs running the department need sacking.
Country is seriously f@uked up...people come into this country never worked a day in life get everything threw at them... Hopefully she gets this sorted fecking last thing she needs