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TAOISEACH LEO VARADKAR has said it would be “inappropriate and unethical” if the company providing a life-saving drug to patients with a chronic lung condition was to cut off its supply to some Irish patients.
21 Alpha-1 patients in Ireland have been receiving the Respreeza drug up until now through a compassionate use programme.
However, the HSE failed to reach a price agreement with its manufacturer, CSL Behring, and it has decided not to fund the roll-out of Respreeza to all Irish patients.
In a statement in August, the HSE said that it did not find the clinical benefit of Respreeza to be “sufficiently strong in the context of the proposed cost and budget impact”.
It remains unclear if the manufacturer will cut-off the Respreeza supply to those under the compassionate use programme, as the HSE has received no formal notification of the intention to discontinue access to the compassionate scheme, according to Taoiseach Leo Varadkar.
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.
The Alpha One Foundation said the drug “slows the progression of lung disease associated with Alpha-1″ and can lead to “fewer chest infections and less time spent in hospital”.
Speaking in the Dáil today, Varadkar condemned the possibility of the removal of the drug from those on the compassionate use programme:
It is completely inappropriate and unethical for any company to link reimbursement decisions to a compassionate access scheme and I would consider it unscrupulous if the company was not to honour any commitments which it has made to patients.
He said that the Minister for Health Simon Harris has directed the HSE to “seek assurances from the relevant hospital, Beaumont Hospital, that appropriate care arrangements are in place in the event of the access programme being discontinued by the company”.
[image alt="original" src="http://cdn.thejournal.ie/media/2017/09/original-227-266x400.jpg" width="266" height="400" credit-source="Sam%20Boal" credit-via="Rolling%20News" caption="Patient%20Josephine%20Mc%20Guirk%20with%20the%20Alpha-1%20Patient%20Action%20Group%0A" class="alignnone" /end]
‘Insufficient evidence of benefits’
Despite Varadkar’s strong words in relation to those under the compassionate scheme, he backed the HSE’s decision not to reimburse the drug.
“The HSE has carefully considered the pricing and reimbursement of the medicine through its decision-making process and there is insufficient evidence to suggest patients would drive a clinically meaningful benefit from this treatment,” he said.
He said that at the heart of the assessment process is “the rationale that decisions about the reimbursement of medicines in Ireland are made on an objective and scientific basis, taking into account expert opinion, as appropriate, and recognising the health needs of the population and other factors”.
Speaking in August when the decision was made not to reimburse the drug, Professor Michael Barry, Head of the National Centre for Pharmacoeconomics said:
“We know this is a difficult time for patients who have been affected by this decision. However, the cost-effectiveness of this drug has not been demonstrated following submissions from the manufacturer.
“The HSE has to consider the wider population and needs to manage the full range of health services to all of the other patient groups within the finite resources at its disposal.”
Calls for action
The efficacy of Alpha-1 has been recognised by the European Medicines Agency and it has already been approved in 12 European countries. It’s estimated that the drug could benefit up to 60 patients in Ireland.
The Alpha-1 Action Group and the Alpha One Foundation took part in two hour-long vigils in August – the first at the head office of the HSE, and the second at the Department of Health’s Hawkin’s Health offices.
[image alt="alpha 1" src="http://cdn.thejournal.ie/media/2017/09/alpha-1-4-296x245.jpg" width="296" height="245" credit-source="Sam%20Boal" credit-via="Rolling%20News" caption="Alpha-1%20Patient%20Action%20Group%20Protest" class="alignnone" /end]
They called on the HSE and Minister for Health Simon Harris to “put patients first and to hammer out a deal with the pharmaceutical company on making Respreeza available in Ireland”.
“Alpha-1 patients are becoming increasingly concerned and upset as they await a positive decision,” Geraldine Kelly, CEO of the Alpha One Foundation said.
‘We wouldn’t be here without it’
Johnny Hannan (67), from Mallow in Cork, is one of the patients who took part in the clinical trial.
“Respreeza has been clearly deemed to be of benefit for patients, so while policy-makers here might query its effectiveness, you have to wonder if they just think that we patients are not worth the investment,” Hannan said.
“For those of us lucky enough to have had access, we know we wouldn’t still be here without it. Respreeza has the potential to add years back onto people’s lives. For us, it really is a lifeline.”
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.
Maruane Felllini !!!
Robert Sheehan from Love/Hate would be fantastic.
cool hopefully unlike the recent project on Michael Jackson, they will not select a white man to play Phil. Love the guy, long overdue.. You Can Always Hear The King’s Call…..
@Dáithí Ó Raghallaigh: why would you choose a black actor to play 2001 Michael Jackson who was white as white can be
@M: Because the whole point of acting is that you’re pretending to be somebody who you’re not.
@M: not white.
Find Smiley Bolger and ask him who is the Belfast Philo? (He is frontman art of a Lizzy tribute act that hail from Belfast I think?) They often plays Vibe for Philo gigs – has to be seen to be believed !
Have seen him with 2 guitarists Phil Edgar And Brian Grace – (don’t know if all 3 are in the same tribute act but hav seen them play together).
But my god – u’d swear it was Lizzy live & Dangerous in sound AND in appearance.
@Barry Ringwood: your thinking of Thin Az Lizzy, from Dundalk (not sure if they are still together) all you had to do was close your eyes an Philip was on stage,…so like them
@Tony Gordon: is it dundalk? 1 Guitarist is called Phil Edgar – and most of times ive seen them at vibe for Philo gigs – they had another guitarist called Brian Grace (whom I think is a dub and I don’t know if he’s ‘in’ the band properly or just jams with them…
But if that’s them… Yes. .. absolute class
@Tony Gordon: Bang on, it was as close as close could be to hearing Phil Lynott sing… Looked nothing like him at all, but they totally sounded like Thin Lizzy
@Tony Gordon: Thin Az Lizzy are back on the road again in the same lineup as before. Johnny Fox is the frontman. True enough he’s the best sounding Phil Lynott I’ve ever heard.
What about Chris Kamara from sky sports
Wasn’t Gary Dourdan billed to play him at one point?
@Neil Murray: he was indeed
@Neil Murray: Lenny Kravitz aswell at one stage. This idea has been knocking around for years, let’s hope they make a runner of it this time.
Morgan Freeman would be brilliant as Philo
Many old guys going -Hmmmm??
Age: no (x3)
Race: no
Height: no
Hair /lack of: no (how did that happen)
mentality: yes
Have a Dublin cousin who’s the image of him. He talks just like him, plays bass good enough for far away shots, has the same swagger and by the end of a three week med holiday is almost the same colour.
Would a touch of dark makeup be wrong?
Is it more racially incorrect to change his skin-tone in order to be ethnically correct or is it more ethnically wrong to use a non-irish actor of similar skin-tone to play a proud Irish man?
Hmmm…
Hope they cast a white perosn just for all the hilarious outrage that would follow.
Get Brush Shiels on the panel to choose he knew Lynott the best
Sounds like another job for Aiden ‘Littlefinger’ Gillen, you can’t go wrong with Aiden Gillen.
@Ron North: or Brendan Gleeson? He’s a great actor, he could pull it off.
His son Macdarragh (Dara) Lambe should be offered to play the part, he’s Phil’s double
They’re going to have to go southbound
Kwaku Fortune is the man for this.
Marty Morrissey
Apologies for couple of typos…. frontman ‘art’???
His Son Macdarragh (Dara) Lambe should be asked to play the part, he’s Phils double
@Aideen Murphy: agreed, he is the image of Phil. But I’d say he’s a bit too old. He’s almost 50 according to Wikipedia and Phil died at 36…
Wesley Snipes.
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