The Irish Kidney Association has reported an increase in transplants with 298 performed on Irish patients last year. The figures represent a 12% rise on the 266 transplants performed in 2015.
Around 600 people are awaiting life-saving heart, liver, kidney and pancreas transplants.
The association today launched organ donor awareness week, which starts next Saturday.
280 of the transplants were performed in Ireland and a further 11 paediatricorgan transplants and 7 living donor transplants were performed on Irish patients who travelled to the UK, with the Health Service Executive funding the operations.
Irish Kidney Association Chief Executive, Mark Murphy called for an organ donor registry to be set up, in line with the HSE consent policy, to help increase deceased donations.
The IKA said there are now many ways for people to show willingness for organ donation, such as by carrying the organ donor card, downloading the Smartphone App, or allowing Code 115 to be included on a person's driving licence.
280 of the 298 transplants for Irish patients were performed in Ireland
Living kidney donor and RTÉ broadcaster Vivienne Traynor, is continuing in her voluntary role as an ambassador for Organ Donor Awareness Week.
Meanwhile, Minister for Health Simon Harris says he has prioritised the development of legislation to provide for an opt-out system of consent for organ donation.
Mr. Harris is planning to bring a memo to Government shortly setting out this policy direction.
He said he will also launch a public consultation on the development of the proposals before the end of the summer.
Under an opt out system, people would be regarded as having consented to organ donation after death, unless they specified otherwise.
The Health Service Executive should be a slimmed-down body "more equipped to lead than to directly control" and "with less management layers between the top and the front line", the Minister for Health has said.
Simon Harris outlined his vision for a less bureaucratic HSE at this morning's meeting of the Oireachtas Committee on the Future of Healthcare.
During his opening address on the future direction of health policy, Mr Harris said: "Over the next decade we need to get past the stage of constant fire-fighting to a place where we can have a mature debate about how to set priorities and where to develop our services."
Mr Harris also said he hopes political consensus can be agreed on the forthcoming report of the committee.
He said: "Subject to the committee's report, I intend to ask my department to come forward with proposals to improve governance arrangements for the HSE for so long as the HSE continues in its current form.
"This will include examination of the current vesting of governing authority in the HSE Directorate, including the fact that the director general is responsible to the directorate for the performance of his or her functions."
However he stressed his desire for a slimmed-down HSE body.
He said: "We have gained much in recent years through national initiatives in areas such as the cancer programme, the integrated care programmes, the Fair Deal scheme and many other areas. We need to retain such capability and avoid reverting to stand-alone geographically based organisations in the mould of the health boards.
"However, the national health capability which takes the place of the HSE is likely to be a slimmed-down body; one more equipped to lead than to directly control and, accordingly, with less management layers between the top and the front line."
Mr Harris told the committee that the current system that financially incentivises hospital consultants to treat private patients instead of public patients is "perverse" and measures need to be taken quickly to change it.
He was responding to a question from committee chair Róisín Shorthall, who asked about the provision of private care in public hospitals.
Earlier, in his opening address to the committee, the minister suggested that hospital consultants' should no longer be paid through individual "fee-for-service payments" for treating patients. Instead they should be paid for treating private patients as part of their annual salary, he said.
Eric Topol sketches the future for medicine, and also shows some of the dramatic changes in medicine, which have already taken place, over recent decades.
"Topol is one of medicine's most innovative thinkers about the digital future.... [A valuable contribution to a fascinating subject."
Jessica May was moving quickly up the career ladder until she was tripped up by mental illness.
Following the birth of her first child, Jessica developed a problem with her thyroid gland that greatly exacerbated her pre-existing anxiety disorder.
"I've had anxiety my whole life," says the 36-year-old from Canberra, Australia. "The [thyroid] condition meant that my anxiety got out of control."
This was back in 2012, and Jessica decided to return to her civil service job sooner than originally planned, after she and her doctor agreed that getting back to doing the work she loved would keep her focused and hopefully mitigate her anxiety.
But Jessica, who had to reveal her mental health problem to her employers to receive the flexible schedule she needed, claims that her managers and colleagues started to make negative assumptions about her capabilities, and began to exclude her from projects.
"Because of how I was treated... I didn't really get better," she says.
Having previously managed 17 staff, Jessica says she felt disheartened and devalued. Enabled helps people with disabilities find employmentHowever, the bad experience did ultimately have a positive impact - it made Jessica determined to help other people with mental or physical disabilities, and gave her the idea for setting up a business to do this.
"I knew there needed to be something for people with disabilities who just need a little bit of flexibility from their employers," she says.
So she decided to quit her government job and launch Enabled Employment, a recruitment consultancy that helps people with a disability find paid work.
Today, the Canberra-based company helps thousands of people find work at more than 400 businesses in Australia, including accountancy giant PricewaterhouseCoopers, taxi hire service Uber, and even the Australian Defence Force.
To help get Enabled up and running, Jessica successfully applied for a small entrepreneurship grant from the Australian Capital Territory government.
She left her civil service job one Friday in December 2012, and started work at Enabled the following Monday, with help and support coming from a local start-up support initiative called the Griffin Accelerator. The number of people and companies using the business then slowly started to grow.
The business is similar to a regular recruitment agency, in that it maintains an online listing of available jobs, and acts as a mediator between would-be employees and hiring managers.
However, Enabled also offers what it calls "accessibility brokering", which means that it works to ensure that businesses are able to offer employees the working conditions they need to perform at their best. This includes checking on flexible working hours and ensuring that offices have disabled access and toilets.
Jessica is keen to stress that the company is not a charity. Instead it is a for-profit business.
She believes that charities that pay businesses to take on disabled staff can reinforce negative stereotypes about disabled people.
"It really devalues people with disabilities who are totally capable," she says. "We don't want anyone to feel like a charity case."
Instead, Enabled charges companies, typically a one-off fee equivalent to 10% of a person's annual salary. By contrast, people who use Enabled to find work don't have to pay it anything. The late Australian comedian Stella Young (centre) was an Enabled Employment ambassador"There's 4.2 million people in Australia with a disability. Many of these people are very competent, it is really about trying to break down their barriers to work," says Jessica.
"We charge businesses for our services because you should be paying for amazingly qualified people, and you should also be paying for the diversity that it brings."
Enabled is valued at more than six million Australian dollars ($4.6m; £3.9m), and has expanded its services to include military veterans and indigenous Australians.
Suzanne Colbert, the founder of the Australian Network on Disability, says that Enabled has "freshened up" the Australian job market's otherwise "stale" attitude towards hiring people with disabilities.
She adds that Enabled has allowed employers to "tap into new sources of talent".
When it comes to its own staff, Enabled practises what it preaches. All seven full-time employees have a disability and work within a schedule that accommodates them best. This was back in 2012, and Jessica decided to return to her civil service job sooner than originally planned, after she and her doctor agreed that getting back to doing the work she loved would keep her focused and hopefully mitigate her anxiety.But Jessica, who had to reveal her mental health problem to her employers to receive the flexible schedule she needed, claims that her managers and colleagues started to make negative assumptions about her capabilities, and began to exclude her from projects.
"Because of how I was treated... I didn't really get better," she says.
Having previously managed 17 staff, Jessica says she felt disheartened and devalued.
However, the bad experience did ultimately have a positive impact - it made Jessica determined to help other people with mental or physical disabilities, and gave her the idea for setting up a business to do this.
"I knew there needed to be something for people with disabilities who just need a little bit of flexibility from their employers," she says.
So she decided to quit her government job and launch Enabled Employment, a recruitment consultancy that helps people with a disability find paid work.
Today, the Canberra-based company helps thousands of people find work at more than 400 businesses in Australia, including accountancy giant PricewaterhouseCoopers, taxi hire service Uber, and even the Australian Defence Force.
To help get Enabled up and running, Jessica successfully applied for a small entrepreneurship grant from the Australian Capital Territory government.
She left her civil service job one Friday in December 2012, and started work at Enabled the following Monday, with help and support coming from a local start-up support initiative called the Griffin Accelerator. The number of people and companies using the business then slowly started to grow.
People with a disability are less likely than the rest of the working-age population to get a job and more likely to leave employment, even when their disability does not create difficulties with everyday activities.
The finding is contained in an ESRI report whose authors calculate that if all people with a disability who wanted to work had a job, half of all disabled people of working age would be in employment instead of the current 31%.
The ESRI study was commissioned by the National Disability Authority and draws on official data spanning the five years up to 2015.
ESRI study was commissioned by the National Disability Authority
It finds that 31% of people aged 20-59 with a disability were at work compared to 71% of those without a disability.
While slightly more than four out of five with a disability were working or had worked at some stage, almost two out of five had not worked for four years or more.
For those without a disability, the rate of job entry picked up during the onset of economic recovery. However, the study found little sign of a recovery for people with a disability by 2015.
The authors calculate that if all people with a disability who wanted to work had a job, half of all disabled people of working age would be in employment instead of the current 31%.
However, the report says specific Government interventions are required, such as allowing people with a disability to retain medical cards when moving into employment.
The Health and Safety Authority has said that two men have died in separate workplace accidents in counties Offaly and Wexford.
Inspectors from the HSA will visit both scenes Both men were farmers.
In County Wexford, a man in his 20s died when the quad bike he was driving overturned into a ditch. In County Offaly, a farmer in his 70s died after he was struck by a tractor on his farm at 8am at Fivealley, outside Birr.
HSA inspectors have arrived on the scene, and an investigation has been launched into the circumstances of the accident.
A measles outbreak in Romania has killed 17 children and infected thousands more since September due to poverty and an anti-vaccination movement.
Romanian health minister, Florian Bodog said that none of the children who died from the highly contagious virus had been vaccinated, adding that the last victim was a one-year-old girl from the northern city of Satu Mare.
More than 3,400 people have been infected since February 2016 compared with the year before when the country registered seven cases but no deaths, Mr Bodog said, according to the Hotnews.ro site.
He urged people to get vaccinated, saying it "is the only effective way to prevent the disease".
Measles is a contagious respiratory illness characterised by high fever and the eruption of small red spots.
The World Health Organization says children in affluent countries have a greater risk of infection because of scepticism about immunisation
The World Health Organisation recommends two doses of vaccination, the first by a child's first birthday, to ensure immunity and prevent outbreaks.
Such vaccinations should cover 95% of the population.
But Mr Bodog said only 80% of Romanians receive the first vaccination dose and just 50% receive the second.
In Romania, poverty, the lack of access to health services, and the percentage of parents who refuse to vaccinate their children are at the heart of the recent epidemic.
Religious organisations and public figures have led recent anti-vaccination campaigns.
According to the European Centre for Disease Prevention and Control, while Europe as a whole has made progress against the virus, Romania is still considered high-risk for transmission, along with Belgium, France, Germany, Italy and Poland.
In poor countries, many people simply do not have access to the €1, but the WHO has pointed out that children in affluent countries, have a greater risk of infection because of scepticism about immunisation.
Essential medicines are those that satisfy the priority health care needs of the population. They are selected with due regard to public health relevance, evidence on efficacy and safety, and comparative cost-effectiveness.
Essential medicines are intended to be available within the context of functioning health systems at all times in adequate amounts, in the appropriate dosage forms, with assured quality and adequate information, and at a price the individual and the community can afford.
The Health Information and Quality Authority has said it found a wide variation in the medication safety arrangements in hospitals during the first unannounced inspections of this kind.
Under-reporting of mistakes, non-reporting of near misses with drugs and outdated reference materials were revealed during the series of inspections.
Particular problems were identified in University Hospital Waterford, Bantry General and Nenagh.
University Hospital Waterford did not have essential governance arrangements for medication safety.
HIQA says it was informed that medication-related clinical incidents were likely under-reported at Waterford.
There was also “outdated and potentially conflicting” reference information for using intravenous medication in clinical areas.
HIQA says that in response to the risks it identified, the hospital appointed a medication safety pharmacist.
The health watchdog has published the first inspection reports on medication safety in seven hospitals:
At Bantry General, an immediate high risk was identified with instructions for administering intravenous medications that could be incorrect.
HIQA noted the low number of medication errors and near misses reported during 2016, relative to other hospitals.
Medication safety was not systematically monitored and there was no up-to-date local list of medications stocked.
At the Mid-Western Regional Hospital in Nenagh the health watchdog found that near misses were not being reported.
The hospital did not have essential governance arrangements in place and there was “ambiguity” over who was ultimately accountable for patient safety regarding medication.
There was no up-to-date local list of medications stocked in the pharmacy.
At Connolly Hospital in Blanchardstown, inspectors found it did not have a defined, multidisciplinary medication safety programme in place at the time of the HIQA visit.
Senior management said there was likely under-reporting of medication errors.
Frontline staff told HIQA inspectors that they had not received feedback on medication-related incidents they had reported.
The health watchdog has published the first inspection reports on medication safety in seven hospitals.
The inspections were carried out between November and December 2016 at Bantry General, Connolly Hospital, Naas General, Nenagh Hospital, the Mater, Sligo University Hospital and University Hospital Waterford.
HIQA says Naas, the Mater and Sligo showed good practice in relation to medications and patient safety and these hospitals had an open incident and near-miss reporting culture.
Sean Egan, HIQA acting head of healthcare regulation, said error associated with medication use constitutes one of the major causes of patient harm in hospitals.
He said that international studies suggest that on average at least one medication error per hospital patient occurs each date.
While most cases do not result in harm, patient harm does occur in a small but significant number .
A Canadian town has apologised after a water treatment plant turned the water supply pink. Residents of Onoway, Alberta, complained to the town office, when taps began running pink water on Monday.
In a statement, Mayor Dale Krasnow said there was no public health risk but the town "could have done a better job communicating what was going on".
The mayor said it was the unfortunate side-effect of a common water-treatment chemical, potassium permanganate.
The chemical is commonly used to remove iron and hydrogen sulphide from water, and the town office said it got into the reservoir when a valve malfunctioned during "normal line flushing and filter backwashing".
"The reservoir was drained, however some of the chemical still made it into the distribution system.
"While it is alarming to see pink water coming from your taps, potassium permanganate is used in normal treatment processes to help remove iron and manganese and residents were never at risk."
The chemical can cause skin irritation, according to the World Health Organization, but there were no reports of any adverse effects.
Complaints were more about being kept in the dark - residents said they were annoyed they were not told why the water was fluorescent pink, until Tuesday morning.
"This is a situation we can certainly learn from and develop a strategy for better response and communication should we ever face the same or similar situation in the future," the mayor said.
Every afternoon, the grandmothers of Phangane village wrap pink saris around themselves and slip abacuses and chalkboard into their backpacks.They are going to school.
Some of them have trouble with seeing the letters, and others feel chest pain when they talk. But every day except Thursday, these women gather to learn from a teacher less than half their age. International Women's Day 2017 is the one-year anniversary of the school, and photographer Satyaki Ghosh has been documenting the women's journey to literacy.
Yogendra Bangar, is the founder of the school.
He started it after women in the village told him that if only they could read, they would be able to read about the life of Chatrapati Shivaji Maharaj, a 17th century king whose life is celebrated in the village every year. "It is said that women have to be respected on Women's Day, so we thought that our grandmothers, who until now have not received respect, shall finally get the respect they deserve," he says. "The people of our grandmothers' generation did not get any opportunity to go to school."
The Health Products Regulatory Authority has recommended access to medicinal cannabis under a monitored, five-year programme, confined to a number of specific illnesses.
HPRA CEO Lorraine Nolan told members of the Oireachtas Health Committee that the authority could not recommend widespread access to cannabis for the treatment of a range of medical conditions.
However, Ms Nolan said that access could be facilitated under appropriately-controlled circumstances where adequate assurance of patient safety and follow-up can be provided.
The HPRA provided an expert report to Minister for Health Simon Harris on the use of medicinal cannabis following cross-party support for legislation proposed by AAA-PBP TD Gino Kenny.
The HPRA specified three conditions that could be part of a monitored pilot programme: spasticity associated with MS, intractable nausea and vomiting associated with chemotherapy, and severe, treatment-resistant epilepsy.
Ms Nolan said that to date there is an absence of scientific data demonstrating the effectiveness and safety of cannabis products.
"There is insufficient information on the treatment of long-term medical conditions, such as those for which there is a public focus.
"In addition, most cannabis products available under international access schemes do not meet pharmaceutical quality requirements for medicines," Ms Nolan told members.
The HPRA said its position is based on current scientific evidence, and will be kept under review
She also said the review highlighted significant gaps between the public perception of effectiveness and safety, and the regulatory requirement for scientific data which is mandatory to determine the role of cannabis as a medicine.
The HPRA report concluded that cannabis for medical use should only be initiated as part of a structured process of formal on-going clinical evaluation in patients with the clearly defined medical conditions.
This position is based on current scientific evidence and will be kept under review.
The Principal Officer of the Department of Health told the committee that the minister described the HPRA report as a "milestone" in the development of policy on medicinal cannabis.
Eugene Lennon also told members that patients accessing the proposed programme would be required to be under the care of a medical consultant.
"The minister intends to progress the establishment of this access programme as a priority. But to be clear, patients accessing cannabis under the programme, will need to be recommended for cannabis treatment by a relevant medical consultant involved in the patient's care," Mr Lennon said.
He also said that officials were examining legislation required to underpin the programme.
The committee was told that 40 countries were surveyed in the expert report. In Europe, 16 countries do not have any access programmes, nine have programmes for exceptional use similar to that advised by the HPRA, and three countries have wider access programmes.
Mr Lennon confirmed to Sinn Féin deputy Johnathan O'Brien that one licence had been already been granted to a patient for access to medicinal cannabis, while a second application had not been granted.
A mother who has travelled from her home in Cork to Dublin to campaign for greater access to cannabis-based medication has arrived at the Dáil.
Vera Twomey began her 260 km journey on foot, last Monday.
An injury to her knee meant she completed the final stages in a wheelchair.
Hundreds of supporters joined Vera Twomey outside Dáil Éireann
She wants her seven-year-old daughter Ava, who has a rare form of epilepsy, to be allowed access to medicinal cannabis.
The family's request for the medicines, under a special licence was rejected.
The Department of Health has said it is in the process of setting up a compassionate access programme.
She has been accompanied most of the way by PBP-AAA TD - Gino Kenny.
Essential Primary Care aims to provide undergraduate students with a comprehensive overview of the clinical problems encountered in primary care. It covers the structure of primary care in the UK, disease prevention and the management of common and important clinical presentations from infancy to old age. Case studies are used in every chapter to illustrate key learning points. The book provides practical advice on how to consult with patients, make sense of their symptoms, explain things to them, and manage their problems.
Essential Primary Care:
• Is structured in five sections:
- The building blocks of primary care: its structure and connection with secondary care, the consultation, the process of making a diagnosis, prescribing, and ethical issues
- Health promotion
- Common and important presenting problems in roughly chronological order
- Cancer
- Death and palliative care
• Gives advice on how to phrase questions when consulting with patients and how to present information to patients
• Provides advice on how management extends to prescribing - often missing from current textbooks
• Contains case studies within each chapter which reflect the variety of primary care and provide top tips and advice for consulting with patients
• Supported by a companion website at www.wileyessential.com/primarycare featuring MCQs, EMQs, cases and OSCE checklists
The Justice For Magdalenes Research group has said that a huge amount of work needs to be done, to identify where all of the women who died in Magdalene laundries are buried.
Co-founder Clare McGettrick said at least 1,600 women died in these institutions but it is still not known where many are buried.
She was speaking at Glasnevin Cemetery today, one of several locations where flowers were laid on Magdalene graves.
Events were also held in Cork, Galway, Limerick, Waterford and New Ross.
Flowers were laid on Magdalene graves in several locations around the country today
Survivors, as well as children of women who died in Magdalene laundries, spoke at today’s events.
They called for permanent memorials and sensitive development on former laundry sites.
Independent TD Thomas Pringle told the Dáil that €800 million could be saved on the treatment of diabetes, if patients had access to insulin pumps.
He said there are 666 patients in County Donegal with Type 1 diabetes, but only 20 have access to insulin pumps and that €1.3bn a year was spent on treating diabetes with €800 million on treating complications.
The Tánaiste said she would ask the Minister for Health to liaise directly with Mr. Pringle regarding the situation in County Donegal and added that additional funding had been given to primary care centres, for specialist interventions in diabetes.
The world's only airborne eye hospital is on a return visit to Ireland after ten years.
The Flying Eye Hospital is funded by the international charity Orbis and has been helping eliminate the eye disease trachoma across the southern regions of Ethiopia.
It has an operating theatre and 3D technology which helps train doctors, nurses and other healthcare professionals to treat people and restore their sight.
Dr, Maurice Cox, chairman of Orbis Ireland, said that 2.2 million people have been treated by the service to date.
The service has particularly focused on treating trachoma, a highly contagious, painful and preventable eye disease, which is seen widely in regions of southern Ethiopia where 75 million people are at risk.
Left untreated, it can cause profound disability and a lifetime of dependence.
Over the past decade, Irish people have contributed over €4.3 million in providing eye care under the Flying Eye Hospital service, which has returned to thank supporters in Ireland.
The plane that has arrived at Dublin Airport has replaced the one that last visited in 2007 and is a specially designed and newly converted MD-10 aircraft.
By 2019, the facility hopes to conduct 17,000 eye surgeries, as well as over 4,000 training sessions for eye care teams.
It will also help health staff prescribe over 6,000 pairs of glasses.
The plane combines the latest in avionics and hospital engineering and has broadcast facilities so that live operations in the theatre can be shown on board to health staff in the front section.
Fully booked tours of the plane will be held over the next four days at Dublin Airport, with the support of CityJet, before it leaves to continue its mission.
2.2 million people have been treated by the world's only airborne eye hospital
South Korean women will be the first in the world to have an average life expectancy above 90, a study suggests.
Imperial College London and the World Health Organization analysed lifespans in 35 industrialised countries.
It predicted all would see people living longer in 2030 and the gap between men and women would start to close in most countries.
The researchers said the findings posed big challenges for pensions and care for elderly people.
"South Korea has gotten a lot of things right," Prof Majid Ezzati told the BBC News website.
"They seem to have been a more equal place and things that have benefited people - education, nutrition - have benefited most people.
"And so far, they are better at dealing with hypertension and have some of the lowest obesity rates in the world."
The data also forecasts that Japan, once the picture of longevity, will tumble down the global rankings.
It currently has the highest life expectancy for women, but will be overtaken by both South Korea and France, the study suggests. Meanwhile, male life expectancy will go from the fourth highest to 11th out of the countries studied.
The US also performs poorly and is on course to have the lowest life expectancy of rich countries by 2030. The study predicts an average age of 80 for men and 83 for women - roughly the same state Mexico and Croatia will have achieved.
"They are almost opposite of South Korea," added Prof Ezzati.
"[Society in the US is] very unequal to an extent the whole national performance is affected - it is the only country without universal health insurance.
"And it is the first country that has stopped growing taller, which shows something about early life nutrition."
The US will be overtaken by Chile, where women born in 2030 will expect to live for 87 years and men for 81.
Between 2015 and 2030, life expectancy in the UK is expected to go from 79 to 82 for men and from 83 to 85 for women.
Men catching up
The study, published in the Lancet, also shows the gap in life expectancy between women and men is closing.
Prof. Ezzati said: "Men traditionally had unhealthier lifestyles, and so shorter life expectancies.
"They smoked and drank more, and had more road traffic accidents and homicides, however, as lifestyles become more similar between men and women, so does their longevity."
Much of the increases are due to improvements for the over-65s rather than reductions in deaths during childhood.
The study made the projections in a similar way to the methods used by meteorologists to forecast the weather.
It combined 21 separate mathematical models that analysed past trends to make projections into the future.
This approach indirectly takes account of all the different factors - smoking rates, medical advances, obesity patterns - that are changing life expectancy.
It assumes countries continue to progress as they are, so exceptional, unpredictable events equivalent to the fall of the Soviet Union, or huge breakthroughs like a vaccine for all cancer, would massively alter the forecasts.
In summary, Prof. Ezzati said: "Places that perform well do so by investing in their health system and making sure it reaches everyone."
The Taoiseach is to formally recognise the ethnic status of the Traveller community in the Dáil for the first time.
The move follows discussions in Cabinet and a report from an Oireachtas committee earlier this year.
It is not thought that the decision will confer additional rights on Travellers, but will rather formalise their status.
The move follows a report from an Oireachtas committee earlier this year
The move has been described as "historic" by the Traveller advocacy group Pavee Point.
Traveller organisations are expected to gather at Leinster House, to mark the expected announcement by Enda Kenny.
A campaign group for patients with genetic emphysema have said they are hugely disappointed at the decision of Minister for Health Simon Harris not to fund a drug to treat the condition.
Seventeen patients in the Republic of Ireland have been on the drug Respreeza for about ten years, under a compassionate-use programme, supported by the makers CSL Behring.
The compassionate use programme was supported by the company in the hope of HSE approval to fund the drug generally.
However, Mr Harris and the Health Service Executive told the Oireachtas Health Committee today that the State will not fund the drug for clinical reasons.
Simon Harris told an Oireachtas committee the drug would not be funded for clinical reasons
A recent study for the HSE also said it would not be cost-effective at over €100,000 a patient a year.
This evening, the Alpha One Foundation, which represents patients, said it was hugely disappointed.
It said the drug is the only therapy to have been shown to slow the progression of the disease and has been approved by the European Medicines Agency and is available to patients in eight European countries.
It said patients are devastated at the decision and if it is let stand, it is likely to have a detrimental impact on their future health.
The compassionate-use programme was due to end next Tuesday but today the company has told patients it will be extended for two more months, to allow for further talks between the company and the State on HSE funding.
The Alpha One Foundation is to meet with the HSE tomorrow to discuss the issue.
The Department of Health said the operation of compassionate access schemes, are at the discretion of drug manufacturers.
It said any attempt by a manufacturer to link continued access for patients already being treated with a new drug with decisions under the statutory HSE funding process would, in the minister's view, be inappropriate and unethical.
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