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PATIENTS WITH A chronic lung condition have called on the HSE and Department of Health to strike a deal with the pharmaceutical company that makes a “life-changing” drug.
CSL Behring has indicated it will withdraw its Respreeza therapy from 21 Alpha-1 patients in Ireland at the end of the month. They are receiving the treatment through a compassionate use programme.
The Alpha One Foundation said Respreeza is “the only therapy shown to slow the progression of Alpha-1, resulting in a decrease in the frequency and severity of chest infections and associated hospital admissions”.
Patients with the condition, also known as genetic emphysema, have a deficiency of the Alpha-1 antitrypsin protein, which can lead to severe lung, liver and skin problems. Most people with the condition develop emphysema or chronic obstructive pulmonary disease (COPD) at some stage in their lives.
Kitty O’Connor, Chief Executive of the Alpha One Foundation, said: “The vast majority of these patients generously participated in a clinical trial here which was a vital part of its initial clinical research. The company argues that it has continued to provide this therapy to people on compassionate use grounds.
“However, we believe that it is unfair that patients who have served the company so well should continue to live under a cloud of deadline after deadline, with all the stress and worry that involves, and on top of having to manage a very challenging condition.”
O’Connor said, aside from the 21 patients currently receiving Respreeza, an estimated 40 others could also benefit from it.
“It is available in eight European countries – Italy, France, Germany, the Czech Republic, the Netherlands, Spain, Greece, and Slovakia. It’s time to add the Republic of Ireland to that list. It’s time to put patient’s lives first,” she said.
About 350 people in Ireland have been diagnosed with the most severe form of Alpha-1. It’s thought about 3,000 people have this form of the condition but are yet to be diagnosed, while thousands more have a moderate deficiency.
‘Living proof it works’
Johnny Hannan, 67, from Mallow in Cork, is one of the patients who took part in the clinical trial.
I am on the drug Respreeza for over 10 years and I am living proof that it works. Some time ago I was told that I might not live to see my 60th birthday. I am now 67 and am a very healthy man again thanks to Respreeza.
“I am very anxious and worried at the lack of progress by the Department of Health, the HSE and CSL Behring in resolving this horrible impasse.
“As a tax-paying Irish citizen, I deserve a reasonable quality of life and I would urge all parties to re-engage and agree a practical price to allow me and my fellow patients to have access to Respreeza into the future.”
Gillian Acheson, 52, from County Monaghan also has the condition.
“Alpha-1 is a very frightening disease. You can get out of breath very quickly.
I have a young child who is always wanting me to play with her and I feel terrible because I just can’t do it.
“If I had this therapy it could make such a difference to my life. Even if it could slow down the illness and let you live a little longer. I would like to see my daughter’s wedding day,” she said.
Not deemed cost-effective
A spokesperson for the Department of Health said the issue Is a matter for the HSE and CSL Behring.
In June 2016, the HSE asked the National Centre for Pharmacoeconomics (NCPE) to carry out a health technology assessment on the cost effectiveness of Respreeza, which costs over €100,000 per patient per year and is delivered by a weekly injection.
On 9 December 2016, the NCPE did not recommend the drug for reimbursement as it determined the manufacturer failed to demonstrate its cost-effectiveness.
A spokesperson for the HSE told TheJournal.ie the organisation is considering representations made to it by CSL Behring.
“The HSE has also met with the company to fully understand its representations. Under the 2013 Health Act, a final decision can only be made after the representations received have been carefully considered by the HSE.
The operation of compassionate schemes is at the discretion of manufacturers. However, any attempt by a manufacturer to link continued access for patients already being treated with a new drug with decisions under the statutory reimbursement process would be inappropriate and unethical.
“There should be no link between compassionate use schemes and reimbursement decisions and manufacturers should be up-front with patients and clinicians from the outset,” the spokesperson said.
In a statement to TheJournal.ie, CSL Behring said it has been working with clinicians and patients in Ireland for over a decade and provided Respreeza through its compassionate use programme “in hopes of a ‘yes’ decision by the HSE on funding”.
Additionally, we have been in dialogue with clinicians and the Health Service Executive since early 2016 and remain committed to exploring all possibilities to get this important treatment reimbursed for patients with [Alpha-1] in the Republic of Ireland for whom there is no alternative treatment available.
“CSL Behring has appealed the initial negative reimbursement decision and met with HSE in April to review new data. We are awaiting the response from HSE and hope to have another meeting with them in due course to review progress.
“The price CSL Behring has requested for Respreeza is in line with the price already approved in several EU countries and is substantially lower than the price reported by the media in Ireland recently.”
More information on the condition can be read on the Alpha One Foundation’s website.
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Pension fund for Canadians.
Should never have been sold.
FFG way..
@Gary O CONNOR: Never have, never will. A tax on stupidity.
@Justin Gillespie: tell that to last nights winner
@old man trucker: The odd big winner just keeps everyone else sucked in. “It could be you” Yea right.
@Justin Gillespie: Well it could have been them, and it was.
I play because it’s a few quid and it goes to good causes too. https://www.lottery.ie/useful-info/apply-for-good-causes-funding
One of the Astro pitches I use was funded by National Lottery. And a lot of kids uses these pitches for training on – which wouldn’t have happened if people didn’t play lotto and contribute to the good causes.
Yes it’s a chance to win life changing money, but I like to think that each time I buy a ticket, I’m supporting good causes too.
@old man trucker: I’ll tell it to last night’s millions of losers
@Justin Gillespie: Another day another suck the life outta ya comment. Click the poll and answer, save us your negativity please by not commenting. Good boy.
@Justin Gillespie: I don’t really do it except for really occasionally.
But you could also see it as a tax the funds of which are used to fund worthwhile projects in the community but which also gives you the chance of becoming a millionaire.
Depends if you have a negative outlook on life I suppose!
@Joe: but ye but no but ye but no.
@Justin Gillespie: a tax on dreams it could be used to finance rte instead of the licence
@Gavin Mckenna: Don’t think you have a full grasp on how these forum things work Gavin,
Mind you it’s a long time since anyone called me a boy!!
@Gavin Mckenna: My main issue with the lottery is not the people who can take it or leave it but the many many people who spend money they can ill afford on them in the mistaken belief that they have a real chance at winning life changing money.
I remember when the lottery started some one saying that if you bought a ticket on Monday you were far more likely to be dead by Saturday than you were to win the jackpot, and that was before they made it even harder.
As for sctatch cards………
@Justin Gillespie: Justin, is moaning on The Journal truly the only thing in the world that brings you pleasure? I mean, is there anything good you see in the world?
@Joe: The lottery was sold to a Canadian company, so most of the profits goes to them!
@John J. Smith: look at their website. €4m raised for good causes last week!
65% of annual revenues go to good causes according to the deal. So you’re wrong!
@Ricky: You’re mistaking me for some of those moaning lefties Ricky, I am normally a glass haf full kink of guy but there are a couple of things that get to me & the Littery/scratch cards is one of those things.
@Justin Gillespie: Oh the aul freedom a speech speel is it? Thought so. Listen. If you’ve feck all good to say keep it shut. Good boy.
@Gavin Mckenna: If journal.ie relied on the sparkling positivity you seem to be espousing it would be a quiet place indeed.
I must also comment on the fact that the tone of your post is completely at variance with your sentiments regarding said positivity. Something for you to work on.
Wishing you many blessings on this sunny day.
@Justin Gillespie: It’s a bit of a laugh. For less than the price of a pint or 2? Once or twice a month? I know the odds (1:46!/6!) but to hell with it. ‘If you’re not in you can’t win! ” And I vaguely resent the implication of stupidity.
Whole lot less after it became privatised and they ducked around with the number of balls.
Never:
It’s a tax on the poor.
@School4work: it’s not a tax on anyone, those who play it choose to do so.
@Derek Lyster: :Promoting gambling
@School4work: why? Do only poor people play it?
@Criostoir Mac Ranghaill: I bet its not!
@Criostoir Mac Ranghaill: how is it promoting gambling? I’ve play the same numbers each week but don’t know how to place a bet in a bookies.
@Joe: A quick google pulls up plenty of articles and videos explaining how it pretty much is
@Derek Lyster:
Tell that to the poor people who are caught in the lotto trap:
@EillieEs: If one partakes and uses money in a game of chance on a regular basis with very little prospects of winning in normal terms would be having a flutter
@EillieEs: Unfortunately a gambler is the last to admit that they have a problem with gambling money
@Criostoir Mac Ranghaill: not just money, gambling with other things too, going out without taking a jacket, gambling on love and emotions!
@School4work: Why not the rich?
Is this an add
@eoin carroll: this comment is going to divide us
@EVAIS DOVES: it will be a long division
@Fergus Murphy:
Maybe! But it was a great multiplier for the player/s making the relatively small investment for participation in last night’s draw.
Congratulations to the winners!
I was working in retail around the time the sell happened and could see the decline in prizes even from scratchcards and quickpicks. I haven’t played since that trend started, regardless of the jackpot.
Gone to dear, answer never
@Gerard Heery: too*
@JarryWasNotInTheRA: thanks I spotted that after I posted
A tax on hope
The lotto, also known as tax for the poor.
@Winston Smith: nah that’s booze and fags
@Winston Smith: Not a tax. Nobody is forced to play it
@Mattress Dick: Fags yes, just you paying to cut years off your life. Rich people drink alcohol too.
@Winston Smith: must be great to be as smug as you
@Mattress Dick: Can actually go add in there gambling in general.
@Wheresmyjumper: More cynical than smug.
Tomorrow’s poll: Do you like stuff?
@Ferdia McManamon: Yes
@Ferdia McManamon: if I say yeah will you give me €9.7 million??
@Karl C: bit short right now in the house, I can’t get maybe 9.1 for you and the rest to follow? Please don’t hurt the dog, oh or family.
€6 minimum spend…gone way way too expensive..I was in New York in January $1 to play lotto..
The big money spinner for the people who run the lotto is that there is no roll over for the lotto plus and lotto extra
Look back at the numbers of winners in this section few and far between
Its a psychological scam
If not an ad, you’ll find it’s deffo market research. What harm?
The lotto is a bit like offering a prize of €5 to someone if they can guess a coin flip correctly at €3 per guess. It doesn’t make any sense to play.
@Rochelle: it’s not about sense,, it’s about buying a ticket when the jackpot is high, then going to bed and in the moment of slumber(not quite awake but not gone to asleep) you are thinking about how you would tell the members of your family how you are about to pay for their houses and make their life’s that bit easier,, it’s all about the dream,, well it was till they sold it to a foreign investment company,, why the hell wasn’t our it given to our own pension fund….:(
@devils avacado: I’d pay for your house if I won big, just so you know. Now stop stealing my dreams, Don you also get the one where you’re eating a kitkat in a field of cabbage? What does it mean, I’m in need of a chat with a panda in a vegan restaurant?
@ThatLJD: never had the cabbage kit-kat one, but for some reason I have a recurring dream where I can jump really high and float to a soft landing, but I’m being chased by a pitch black shadow of a man who is wearing a cape and a very big hat,, looks like the hooded claw from Penelope Pitstop,, only a lot scarier,, apparently it means I have suppressed memories,, or some crap like that…..:)
@devils avacado: you don’t want to be going around talking about that. It’s not constructive, you need to be bottling that up inside along with whatever else you can. If you don’t the day will come where something will trigger you and your reaction will be disappointingly mellow. If you bottle everything up and have this repressed range and anguish inside then it’s going to make for a far better spectacle when you eventually blow up.
@ThatLJD: Amen brother.:)
@devils avacado: Your chances diminishes drastically when the jackpot is bigger
@ThatLJD: Range? Range Rover? Cooker?
@Criostoir Mac Ranghaill: how?
Ridiculous to sell our Lotto to an investment company, they bought it for for a reason, it’s a constant flow of cash every week, how anybody thinks it was a good idea to give away our money to retired Canadian teachers is beyond me,, short sighted fools,, and for that reason,,, I’m out, I haven’t done it since they increased the price and made it harder to win.
@devils avacado: That’s Fine Gael for you franchise everything that iis state owned
Total no brainer
I used to play All or Nothing and I got few wins and I know some who got 5k 3 times but they replaced with Daily Million which is c.ap game with zero winnings.
The lucky winner can now go for a trip around the world, oh wait…
Playing 32 years now.
Birthday numbers
Would have a fortune if I kept the cash
Afraid not to do it in case the numbers dont come up
@Shay Flynn: This is why it’s a tax on the poor. Just give up. Chances of winning is 10 million to 1. Chances of getting hit by lightning is 3 million to 1. You have more chance of getting hit by lightning 3 times before you came close to winning the lotto
@Bren: I take them odd’s… Much better than 1 in 10 million chance!
@Bren: so your telling me there’s a chance
31.1% have an gambling issue. Not a pleasant statistic!
@Stephen: So true. I would say Ireland has a gambling problem. There’s even gambling machines for children in many places.
I do our own soccer club lotto every week,
Killala AFC – Jackpot €16000
Keep local, do the local lotto u know where the funds are going
buy lotto sometimes are too expensive
Just another Tax on those willing to pay it
There was a time that you would win a few Bob the odd time on scratch tickets but it looks like the odds of winning anything have taken a hike.
Same with the lotto
I much rather keep my hard earned in my own pocket .
It’s a tax on the stupid. Over 100 million I get stupid
It could be you, but probably never will!
The National Lottery are thinking of buying some advertising from us poll.
As I explained to a friend the other day, I have one €2,500 at least. He has been handing over €5 a week for the last 10 years and I haven’t. It’s a tax on the desperate and the struggling, promoted by the all for No 1 society.
I do it in the bookies, better odds
Have the same numbers from day 1 so am trapped .Should be made go all quick picks.
have your say