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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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What??? You mean 131 didn’t work… Noooooooo!!!
Everyone is waiting for 132s
So less buy the 131′s and more buy the 132′s meaning that, overall, the same amount of cars are bought this year.
Feckin brainless spanners, the gombeens that came up with this. Didnt we all say this would happen.
*sigh*
here is an idea. Scrap VRT car sales go up.
Exactly
Which would reduce our tax base and increase the money we spend on imported goods. If you want to support an industry there are better ones to choose.
Great for people working in car factories …. Which we don’t have … I’d rather see an incentive to maintain old cars ( using labour in Ireland), than send money out buying new cars …
Daft to encourage purchase of new cars and send €6,000,000,000 out of the Irish economy every year.
Dafter to use borrowed money to do it and give the banks 9% interest in the process.
NCT was supposed to prolong the national fleet and prevent wasting money in unnecessary early replacement. Car life longevity is what “smart economies” do: USA 10 yrs avg: Sweden 10.7 yrs avg: Germany 8 yrs avg.
Do the Irish not get it?
€6 bn would create a lot of jobs if spent in the Irish economy instead of “exported”!
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http://www.CarTaxPetition.net
So, fewer people can afford new cars? Well holy jaysus. That’s a surprise!
Just a few things on car sales, As with the UK you should be able to buy a reg for your car making a 99D into a 01C and so on, Motor tax should be scraped and put on fuel with rebates to business users and taxi, haulage etc.. NCT on cars over ten years old should be from the day of the test and not this stupid system of the date of first registration making Jan- April the busiest in the test centres.
Is the VRT not illegal in accordance with EU regulations? So we cannot blame the EU for that one.
Seemingly the mobility allowance was illegal too, they were able to scrap that..
It should be noted that we don’t make cars here. Our attempts to prop up and assist the motor trade in this country is madness. We should be actively discouraging the purchase of new cars as cars are one of Germany’s biggest exports. It is one of the best ways for us PIIGS to strike back at the Germans and encourage them to give us the debt forgiveness we so desperately want.
Do u still have that passat Ciaran….
Oh my god!…and that’s coming from an agnostic. I always refrain from this question but here it goes….Are you fckin stupid?! Kill Irish jobs put of spite is your suggestion?
I do. Second hand mind so the Germans got that money off some other gorp. I did put ‘new cars’ in the comment mind. Wouldn’t have to be long term, just long enough to have the desired effect.
Who is an agnostic and what’s that got to do with the price of bread?
Yes unfortunate side effect but I think most would agree that we are sending enough money towards the German economy…
Once you go black you never go back
black the most popular colour, reflects the mood of a nation..
Goes well with everything?
And it’s slimming ;)
also don’t have to wash it as often..
why no green cars in the emerald isle? is it because they are unlucky?
Most popular colour suits well to the situation on the market…
The property tax and water charges may possibly add to that also. We should be cutting our spending instead of new taxes. This would eliminate the need to “broaden the tax base” as Noonan regularly cites.
Why would I buy a new car? It’s got 4 wheels and drives just like every other car over the last 30 years! It will cost me several g’s, most of it tax and the tax man then rips me a new one every time i fill so I can drive to work to pay his tax bill.
State backed scrappage scheme ?…. anyone? ……. modified first time home buyers grant? …. anyone? ….. guess not. …. government have a short memory. … and very limited imagination or understanding of demand side economics
It is great to see an ignorant idea fall flat on its face.
I think it’s heavily linked to how much people have to spend rather than an extra digit on the number plate. The masses have spoken when it comes to buying new cars, we can’t afford them. Also with engineering and manufacturing so good these days a car will run for years and years without needing to be changed, people know that, if it ain’t broke don’t fix it. The whole problem was the fascination of the numbers on the reg plate which lead people to think they needed a knew car when in fact they didn’t; wanted yes, needed, no! We are in a time of needs not wants
Volkswagen at No 1 possibly as much to do with VW have its own finance vehicle with attractive interest rates as well as a good product range … As long as banks don’t lend or lend at near credit card rates , then car sales will remain in free fall and VRT receipts reducing in line ….
Personalized number plates would have been a good idea a money spinner and at least those that could afford it would have got some joy from it . . A sort of fun tax for a Change .
good news!
We need to see a whole year’s sales data to determine if the trend in sales of new cars is up or down. The new registration system was brought in to do away with the January spike and spread sales out over the whole year (not because it’s 2013 and superstitious wouldn’t like 13 on their reg plates, as several people have suggested.) Many people will hold off till the 132 reg comes out in July. Sales are down in January and February this year compared to last, but that shortfall should be recouped in the latter part of the year.
Car industry in UK kept 13 plates,the first of which were sold today and they are selling multiples of numbers being sold here without any fuss over superstition etc.
131 and 132 reg plates have nothing to do with superstition. Next year we’ll have 141 and 142 plates, and the year after we’ll have 151 and 152 plates. There are very good reasons for it, just as the UK has a split-year registration system too. When we had one year on the reg plate, sales (and new vehicle registrations) were concentrated in the early part of the year. There is a knock-on effect of this in that most NCTs fall due earlier in the year, leading to a backlog in testing dates.
It just so happened that the new regime started in 2013, and we all assumed that it was a superstitious aversion to the number 13. It’s not. It makes sense to do this.
So they are not attaching the new number plates securely enough ???. They will take some time to catch on, an more and more of them can be seen on the road … Ummm?
You can have any colour you want, as long as it’s black
I love red in a car, my last car was a green scoda octava kept breaking down, maybe it was the colour drives a corolla now cant compare.
have your say