Joint Committee on Health and Children debate -
Thursday, 7 Feb 2013

Lung Health Promotion: Discussion with Irish Lung Health Alliance

Chairman

I apologise to our witnesses and guests for the delay in commencing. I thank the Members of the Houses, Senator Crown who probably got no sleep and Members of the Dáil who would have had limited sleep, for being here this morning. It shows the importance of parliamentary democracy in that we continue and function. I thank them all for making the effort to be here this morning.

I remind members, witnesses and those in the Visitors Gallery to ensure their mobile phones are switched off for the duration of the meeting as they interfere with the broadcasting of the proceedings and the sound recording system even if they are on silent mode.

I welcome everybody, in particular members of the Irish Thoracic Society, the Asthma Society of Ireland, Cystic Fibrosis Association of Ireland, the Alpha One Foundation, the Irish Sleep Apnoea Trust, Professor McDonnell and Mr. Michael McGloin. I will welcome everybody individually later.

Our meeting this morning has been at the request of Senator Crown and I thank him for highlighting the issue and bringing us to the stage we are at today. Our topic for discussion this morning is lung health promotion and it is a very important part of our work programme. We had hoped to have this meeting in conjunction with Ash Wednesday which is the traditional "no smoking day" but we are approaching this issue in the wider context of lung health as opposed to the cessation of smoking, and that is the reason we are discussing the topic today.

I wish to advise the witnesses that they are protected by absolute privilege in respect of the evidence they are to give to this committee. If they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter to only qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against a person or persons or an entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice or ruling of the Chair to the effect that, where possible, they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.

I welcome everybody, in particular members of the Irish Thoracic Society, Ms Suzanne McCormack, chief executive office, and Dr. Edward McKone, president. I understand that Ms McCormack will make the opening presentation and she has five minutes to do so.

Ms Suzanne McCormack

Dr. McKone will do so.

Chairman

I invite Dr. McKone to commence.

Dr. Edward McKone

I thank the Chair, Professor Crown for inviting us to speak to the committee today, and the Senators and Deputies. I want to talk to them about lung disease. It is an extremely important public health challenge. Lung disease is any disease, or medical condition, that affects the lungs. It includes conditions, as mentioned, that are related to smoking such as COPD and lung cancer but also, as members can see from the groups represented here, many other conditions that are not related to smoking such as asthma, cystic fibrosis, sleep apneoa and lung fibrosis as well as genetic conditions such as CF and alpha 1-antitrypsin deficiency. The symptoms of lung disease include breathlessness, cough and wheeze, among others. It is important to emphasise that breathlessness is an extraordinary difficult symptom with which to live. We look after patients who have severe breathlessness. They feel like they are breathing through a straw all the time, they are very disabled, they feel a sense of panic all the time because of the sensation of breathlessness and this is because of respiratory disease. It is important to emphasise the level of disability that takes place in the Irish population because of lung disease.

Lung disease is extremely common in Ireland. One in five people in Ireland will die of a respiratory or lung disease. It is the second most more common reason for admission to any acute medical hospital in the country and in this respect Ireland has the second highest mortality rate in Europe. It is the most common reason for people attending their GPs and the annual cost involved in 2006 was around €560 million.

If one notes how outcomes have changed for people with respiratory disease over time, one will see there has been no impact in that respect during the past ten years. If one compares that to outcomes achieved by our colleagues who look after people with coronary artery disease, one will note that they, through a very concerted public health programme, have seen a dramatic reduction in coronary artery disease deaths over ten years, which is now less than that of respiratory disease.

What are the big challenges that face respiratory disease and that have led to a lack of public awareness of it and a lack of public policy to improve outcomes for people with respiratory disease? The first is a lack of awareness of the condition both among policymakers and among people who have the disease. We recognise that the symptoms of lung disease such as breathlessness are often put off to other factors such as not being fit or getting older when in fact there is disease present. Therefore, people present with quite advanced disease whereby it is very difficult to treat and very difficult to recover lung function. Another issue is the public perception of respiratory disease. People perceive lung disease to be all about a lifestyle choice because of cigarette smoking. The majority of lung disease is not smoking-related. Public policy impacts on reducing exposure to smoking, and although we support it in every sense because it does impact on the incidence of lung disease, there are still many cases of lung disease that will not be affected by this. Outcomes in Ireland are already poor despite having relatively low smoking rates compared to other European countries where outcomes are better.

Another issue which is important to mention is that respiratory disease is a disease of the poor. There is a four times higher incidence of chronic bronchitis in people who have a poor background, a two times higher mortality rate for conditions such as pneumonia and COPD if one is in the lowest socioeconomic class, and a four times higher mortality rate for lung cancer and TB. ITS data that we collected on World Spirometry Day recently identified that one in five people had abnormal lung function who never had a history of lung disease and of those the two biggest predictors of whether they had lung problems was whether they smoked, which we expected, but also their educational level. People who did not get an education level beyond junior certificate had much lower lung function than those who got to leaving certificate or beyond.

Another issue, which is an important reason we are here today, is that there has been a lack of a clear message about lung disease in the past. Twelve charities were focusing on different lung diseases with no cohesive message but in past year we have come together as a group to form lung health alliance to promote lung health as best we can. That is what we have been doing and we have been doing this through the World Spirometry Day, the Love Your Lungs campaign, about which members will hear more later.

Lung disease is a huge public health challenge. It has not been addressed properly and we need to work together to develop a national public health strategy to improve lung health outcomes and increase awareness of lung disease.

Chairman

I thank Dr. McKone for his interesting and sobering presentation. From the Asthma Society of Ireland I welcome Ms Sharon Cosgrove, chief executive officer, and Dr. Basil Elnazir, medical chair. Is it Ms Cosgrove who will make the presentation? She will have five minutes.

Ms Sharon Cosgrove

Yes, I will start. Asthma is the biggest chronic disease that affects the largest number of the population in this country. We estimate that 470,000 people have asthma. The Asthma Society of Ireland has been in operation for approximately 40 years. It represents people with asthma and provides information, education and services. As Dr. McKone said, one of the biggest challenges we have is education for patients, but also we try to advocate on their behalf to have the best possible treatment and guideline-based care in public policy and the health service.

We have an advice line and we deal with 2,000 patients every year. We also hold clinics. We do what we can with the limited resources available to us. We have no statutory funding for our core services for patients. I wished to raise that point at the beginning. A total of 470,000 in the country have asthma. The incidence is the fourth highest in the world. People with asthma are the largest chronic disease group in the country. One in ten people has asthma but the incidence among children is one in five. It is an enormous issue from the point of view of the children and paediatric health.

Asthma is not curable. It is a condition of the lungs which can be controlled and managed with correct medication and patient education. A tragic statistic is that one person per week dies of asthma in this country. A number of those are young people. We have contact from schools and parents concerning children who have lost friends to asthma. Children have died who have been involved in sports days or have been playing football. They were unable to catch their breath properly and have had an asthma attack and, regrettably, they have died. The deaths are preventable, in particular in young people. We are keen to advocate for a comprehensive programme to be implemented to deal with the issue.

Asthma is one of the chronic conditions whereby 85% of those affected can be effectively managed in the main in primary care. The remainder need more secondary care treatment and must be referred to consultants and in the hospital environment. A number of patients require both types of treatment. A total of 20,000 people attend accident and emergency services every year due to an asthma attack or exacerbation. The average length of stay is three days. A total of 50,000 require emergency nebulisation. On average, adults with asthma miss 12 days per year from work and children miss 12 days from school. That has an impact on the education of children and their participation in sports and in regular, everyday activities. Children relate their experiences of playing sports and running and not being able to catch their breath or participate in the same way as other children. Those with asthma are affected in their daily lives in basic activities such as walking up the stairs or running for a bus.

From a public policy viewpoint we seek that the national asthma programme adopted by the Government in 2011 would be implemented. There is a Government drive to implement the programme and we must have impetus behind it to get it through and to ensure the resources are available at primary and secondary care level to address the problems. Xolair is a medication which Dr. Elnazir can explain in more detail. It is intended for severe asthma patients. Access to it is inequitable. It is not covered by any of the reimbursement schemes and it is identified in the global initiative for asthma, GINA, guidelines as the appropriate treatment for the most severe allergic asthma patients. The two main points we wish to pursue today are the implementation of the programme and action to address the inequity of treatment. I spoke to a consultant yesterday who has 40 patients in Cork University Hospital who cannot get access to the drug for his patients who badly need it.

Chairman

I thank Ms Cosgrove. We will discuss the issue in more detail in the question and answer session. I thank Ms Cosgrove for her excellent presentation. From the Cystic Fibrosis Association of Ireland, I welcome Mr. Phillip Watt, the chief executive officer and Ms Caroline Heffernan. I believe Mr. Watt will make the presentation.

Mr. Philip Watt

I thank the public representatives for attending after a very long night. I very much appreciate their being present. I also thank Senator Crown for facilitating today’s meeting. I welcome Caroline Heffernan, a patient advocate who has cystic fibrosis.

Cystic fibrosis, CF, is an inherited chronic disease that primarily affects the lungs and digestive system of approximately 1,200 children and adults in the country. A defective gene causes an unusually thick and sticky mucus to build up that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Our association is the only national patient CF group in Ireland. We were formed in 1963 and this year is our 50th birthday, which is a fantastic achievement. Along with the Irish Cancer Society we are the oldest patient group formed in Ireland.

In the 1950s, few children with cystic fibrosis lived to attend primary school. Today, thanks to advances in research and medical treatments and the fantastic clinicians we have children and adults with CF enjoy an extended life. However, the disease remains challenging. The median age of death is still around 25 years of age, but thanks to the good care standards in hospitals, people with CF can now expect to live into their 30s and beyond. Increasingly, some of our members are attending third level colleges, accessing employment and living more independent lives, with the support of family. However, this also puts major demands on adult CF services in particular. There is a particular deficit of adult CF services and also of children’s services. This country has some of the most severe manifestations of cystic fibrosis in the world and also has the highest incidence of CF in the world, with three times the rate of the United States and the rest of the European Union.

We wish to draw some key points to the attention of the committee. We acknowledge the recent improvements in CF care in recent times, but we are still catching up with accepted standards in the United States and other parts of Europe. The recent approval of the ground-breaking drug Kalydeco and the introduction of newborn screening for CF in 2011 and the opening of the long-awaited unit in St. Vincent’s Hospital are some examples of positive developments. However, huge challenges remain. Isolation facilities are still needed around the country. There is an urgent need for 13 adult inpatient isolation rooms in Beaumont Hospital. There are only four isolation rooms at present for approximately 130 adult patients attending the hospital in Beaumont. It is estimated that the cost of the project is relatively modest at €2.5 million for capital costs alone. The indication is that association will have to collect the money for the project through our fund-raising, which is not entirely fair on patients and their parents who have many other demands in terms of managing the disease. There are major infrastructure deficits in many other CF centres which I have listed in the presentation.

There is need for an increased rate in double-lung transplantation. We are delighted to hear that this week three such transplantations were undertaken in the Mater Hospital. However, we must double the current rate of transplants. Such operations are necessary at the end of people’s lives and it can make a major difference in terms of the extension and quality of people’s lives. We acknowledge the fantastic quality of the transplantation that is undertaken but urge that more such operations would take place.

We also wish to draw the committee’s attention to the non-replacement or significant delays in the replacement of dieticians, specialised nurses and physiotherapists which affect all the groups represented at the committee today. Those on maternity and sick leave are not being replaced.

That is causing real hardship for many of our patients.

Annual assessments in some of our hospitals, which are vital for people's health, are being cancelled or deferred because of staff embargoes.

We also object to the recent increase in prescription charges for medical card holders of 50 cent per item up to a monthly limit of €19.50 per family. That is causing significant hardship for our patients, particularly in terms of the number of medications they must take every month.

We must also preserve research funding into new and innovative treatments, as the recently approved drug Kalydeco shows. We urge that the funding for schemes such as that operated by the Health Research Board, HRB, and the Medical Research Charities Group is maintained.

On the point Dr. McKone made at the start of the presentation about the need for lung health in general to become a much more important public health priority than it is currently, that is consistent from all the messages we heard here today. It must be given a much greater priority. Also, practical initiatives such as greater emphasis on flu jabs and the need for vaccination for pneumonia, which is very important for vulnerable groups but does not get much publicity, are vital. We call for a partnership approach with non-governmental organisations working with clinicians through the Lung Health Alliance and the State as an effective way of going forward.

Chairman

I thank Mr. Watt for his presentation. I welcome from the Alpha One Foundation Ms Kitty O'Connor, chief executive officer, and Professor Gerry McElvaney. They have five minutes to make their presentation.

Ms Kitty O'Connor

I welcome Professor Gerry McElvaney, respiratory consultant in Beaumont Hospital and chairman of the Alpha One Foundation.

I will give members an overview of the Alpha One Foundation, our involvement with the Irish Lung Health Alliance and the importance of that to us. Members might not have heard of alpha 1 previously. They might have commonly heard it described as hereditary emphysema. The disease, whose full name is alpha 1-antitrypsin deficiency, is a genetic condition which can also cause liver disease.

The Alpha One Foundation was set up as a lung charity. It is based in Beaumont Hospital, which is the national referral centre for alpha 1. I realise members have been given a lot of statistics this morning but another one is that one in 25 people in Ireland are carriers for this condition. That makes it the second most common genetic lung condition in Ireland next to cystic fibrosis. Alpha 1 is the fourth most common cause of lung transplantation in the world. To put that in an Irish context, the first single lung transplant and the first double lung transplant in Ireland involved alpha 1 patients. The research we did recently shows that over 3,000 individuals on the island of Ireland suffer with a severe form but 200,000 individuals also have a deficiency, and they are also at risk of lung disease if they smoke.

A national targeted detection programme was established to test people with chronic obstructive pulmonary disease, which members might know as COPD, along with poorly controlled asthmatics, those with unexplainable liver disease and first-degree relatives of people with alpha 1. Early detection of alpha 1 is vital, and it gives us a real example of the way personalised medicine in this age can yield improvements in quality of life, life expectancy, and smoking cessation. To date in our programme we have screened more than 10,000 individuals, 300 of whom had a severe deficiency and 2,000 of whom had a milder form. Twenty-six hospitals participate in that programme and we believe it is vital for the maintenance of this target detection programme.

In terms of how we became involved with the Irish Lung Health Alliance, we decided that we wanted to highlight lung health in Ireland and joined up with other patient support groups and health professionals. There were 12 of us in total, giving us a unique partnership with all of the key stakeholders in lung health. Its key messages are the same as ours: early diagnosis, early intervention, and increased awareness of lung health. We found we have benefited from involvement in and membership of this group. Members might have read about the Love your Lungs campaign last year when we had Dr. Ronnie Delany supporting our cause. That was aimed at highlighting that lung disease can affect people in all socioeconomic groups, non-smokers as well as smokers. We encouraged people who had symptoms of coughing, wheezing and shortness of breath to get a simple free lung test. In the same way someone can get a blood pressure measurement done, one can get a simple lung test done to see if any lung disease is present. As Dr. McKone stated, that campaign highlighted that lung disease is highly prevalent and under-diagnosed in Ireland. The Irish Lung Health Alliance wants to involve all stakeholders in lung health and gives a voice to hundreds of thousands of patients suffering with lung disease. Our main aim this morning is to highlight that we would like to be the contact for the Government in efforts to raise awareness of lung health and its importance in formulating future lung health policies. I thank the members for their time.

Chairman

I thank Ms O'Connor for the interesting statistics she gave, which I was not aware of until I read her presentation before the meeting. I welcome from the Irish Sleep Apnoea Trust Mr. Dan Smith and Mr. Arthur O'Hara. Mr. Smith will make the presentation.

Mr. Dan Smith

The Irish Sleep Apnoea Trust, ISAT, was formed in 2000. We are non-profit volunteers, and we do not receive any State funding.

Sleep apnoea, which we spell the old Greek way, namely, A-P-N-O-E-A as opposed to A-P-N-E-A, the American spelling, is a respiratory sleep disorder in which the sufferer frequently stops breathing while he or she sleeps. Breathing cessations last for at least ten seconds and may be accompanied by a drop in blood oxygen saturation levels or even a cardiac event.

The name "sleep apnoea" is derived from "apnoea", a Greek word meaning "without breath". It is a very serious medical condition, which in its severest form can cause premature death.

There are three main types of sleep apnoea: obstructive sleep apnoea, which is the most common and is caused by an obstruction or collapse of the airway; central sleep apnoea, a neurological condition in which the brain forgets to tell the body to breathe, which is very serious but very rare; and a mix of the two.

Severity of the condition is measured by the apnoea-hypopnoea index, AHI, which measures cessation of breathing per hour. Anything within a range of five to 15 is mild, 16 to 30 is moderate, and above 30, which equates to a cessation in breathing 30 times every hour during sleep, is severe.

There are serious health risks involved with this condition, including excessive daytime sleepiness, which leads to poor work performance and a high risk of road traffic accidents; increased risk of cardiac disease and stroke; increased risk of diabetes; and increased risk of glaucoma. The symptoms include severe snoring, hypertension, diabetes, severe mood swings, excessive daytime sleepiness, impaired cognitive function, impaired short-term memory, and nocturia, which involves frequent bathroom visits during the night.

Treatment is very simple and is by way of a device called a continuous positive airway pressure, CPAP, which splints the airway open by an airflow which is set at a particular pressure. There is also a device called an oral appliance made by a specially qualified dentist, which draws forward the lower jaw. This has proved effective in dealing with mild and possibly moderate apnoea.

Population studies carried out in the 1990s indicate that 4% of the adult male population, 2% of the adult female population and 0.5% of children suffer from sleep apnoea. More recent studies indicate that up to 10% of the adult population and 3% of children suffer from sleep apnoea. In the case of children there is a very close link to those with Down's syndrome, 45% of whom are likely to develop sleep apnoea.

In terms of figures, studies in the 1990s found that there were up to 112,000 sufferers in Ireland, and the figure could be as high as 360,000. If we take the best-case scenario, there is a significant number of people here with the condition. The large increase in the number of children suffering from this condition is of major concern.

I will now deal with the condition as it relates to adults and then in the paediatric area. The current position is that a number of HSE-managed and voluntary hospitals offer an ad hoc type of service. There is no national structure or framework for dealing with the condition in the public health system. The type of service offered varies from hospital to hospital, with only one HSE hospital offering dedicated sleep disorder beds. In many cases diagnostic testing is suspended when an acute hospital finds itself busy, usually through a busy night in the accident and emergency department. Typical of that is a current problem in Dublin in which possibly the largest unit in the country, at St. Vincent's University Hospital, has had its staff reduced and is facing the prospect of a vastly reduced service from June of this year; it is looking at halving the service. The ISAT has met with the chief executive officer of the hospital, who has no money, and the HSE has not responded to correspondence.

The Beaumont Hospital sleep disorder unit is located at St. Joseph's Hospital, Raheny. I might add that that public unit was funded by private sources.

It has been closed since mid-December last as there is a perceived safety issue. I do not know what it is. Since sleep studies have been suspended there, up to 100 patients have been left in limbo. There are similar problems throughout the country. It should be pointed out that there are no sleep medicine consultants employed by the HSE. The diagnostic work is carried out by respiratory consultants, who give up a percentage of their time to deal with the condition.

There are many clinical studies available which prove that sleep apnoea patients who are being successfully treated are less likely to develop cardiac conditions, are up to 33% less likely to have a stroke and usually have fewer visits to their GPs. ISAT has pleaded with two Ministers responsible for health to introduce a national strategy to deal with this problem, but to no avail.

This year, the Road Safety Authority has issued new guidelines to general practitioners on fitness to drive for group 1 drivers. On page 56 of this document, there is a section covering sleep apnoea. It states drivers who suffer from symptoms and are sleepy must not drive and must report this to their driving licence authorities. General practitioners are not qualified to diagnose this condition. With an ad hoc sleep disorder service whose capacity is being reduced, we fail to see how these regulations can be enforced, particularly if a suspected sufferer of sleep apnoea has to wait up to 12 months to be officially diagnosed, and longer to be treated. It is an absolute must that a national strategy be introduced.

The situation for children with sleep apnoea is even worse. Sleep apnoea in children is a very different condition from that in adults. It is frequently associated with conditions such as ADHD, and approximately 45% of children with Down’s syndrome are likely to develop the condition. There is no structure at all, with a number of hospitals offering ad hoc services. There are no sleep consultants employed by the HSE. As with adults, a number of respiratory physicians coupled with respiratory scientists offer very limited services. The following hospitals offer some degree of service: Our Lady's Children's Hospital, Crumlin; Temple Street Children's University Hospital; the Adelaide and Meath Hospital, Tallaght; Cork University Hospital; Galway University Hospital; and the Mid-Western Regional Hospital, Limerick. We believe the paediatric units in Mullingar, Cavan and Drogheda have shown an interest. In many cases, these centres cannot offer the full overnight sleep test - a polysomnogram - and rely on the less reliable oximetry test.

Let me give an idea of the scale of the problem nationally. In 2007, 433 tests, both polysomnograms and oximetry, were carried out in paediatric units. In 2011, 1,793 tests were carried out, representing an increase of 414%. The number of children on non-invasive ventilation increased by 627% over the same period. Waiting times for oximetry testing are in excess of eight months and waiting times for polysomnograms are over 12 months. It is no way to treat our children. A national strategy is required, be it produced jointly or severally.

The diagnosis and management of sleep apnoea cries out for the introduction of a national strategy, both for adults and for children. From an adult perspective, the introduction of fitness-to-drive guidelines for group 1 motorists places additional pressure on what is a fractured clinical service that has been starved of resources over the years. The proposed introduction of fitness-to-drive guidelines for group 2 motorists next year will create an even bigger strain on the service, as it has been proven by a number of recent studies that the incidence of sleep apnoea in professional drivers is as high as 28%. From this perspective alone, there is an undeniable case for a national strategy to deal with sleep apnoea. After all, these guidelines have been introduced by a national regulatory body. As a nation, we must support these decisions. From a children's perspective, it is even more serious. For us to ignore the plight of up to 3% of our children is unacceptable to ISAT and the people. There is absolutely no excuse for it. With the use of modern technology and committed people, the cost factor of a national strategy can be controlled.

Chairman

Is it the case that the HSE has not replied to any correspondence in regard to St. Vincent's hospital?

Mr. Dan Smith

I have received no response from it.

Chairman

When did Mr. Smith last contact the executive?

Mr. Dan Smith

Approximately three or four weeks ago. I have received correspondence on Beaumont. It is kind of kicking to touch.

Chairman

With the agreement of members, I propose that we write to the HSE to determine why it has not responded. Is that agreed? Agreed.

I welcome Professor Tim McDonnell, the national clinical lead for COPD, and Mr. Michael McGloin, chairman of COPD Support Ireland.

Professor Tim McDonnell

I echo my colleagues' thanks to the members for having us here today. In particular, I thank Senator John Crown for organising the invitation.

I have a problem in that most people do not know what chronic obstructive pulmonary disease, COPD, is. It is a chronic disease of the lungs associated with narrowing of the airways. It produces two problems primarily, namely, difficulty with breathing and a propensity to get infections or exacerbation of symptoms that may lead to the patient seeking medical care, either through the general practitioner or in hospital. Patients are very numerous. In the winter, many end up on trolleys, thus contributing to many of the difficulties in emergency departments of which we are well aware.

There is confusion over the disease and people ask whether it is asthma. The name is a difficulty for patients. Many COPD patients with whom I deal tell me they have asthma, COAD or smoker's asthma. COPD is different from asthma. We have heard from my colleague about asthma. Asthma tends to be associated with younger patients and to be more reversible. COPD is a progressive disease that tends to get worse as one goes through life. It is different and tends to affect a different spectrum of the population. Diagnosis is on the basis of a simple spirometer test that examines airflow reduction. It ought to be easily available but unfortunately it is not. It is available only in perhaps 50% of general practitioners' surgeries. That is certainly a problem.

The disease is certainly very common. We have heard a lot of figures today. Much of the problem in the Irish health care system is associated with the provision of accurate figures but we reckon there are approximately 100,000 patients in the country diagnosed with COPD. Perhaps 200,000 more have not been diagnosed. The disease is becoming more common with increasing age. Canadian figures show that approximately one in four people who reach the age of 70 will need treatment for COPD.

We know there are at least 12,000 admissions to hospitals with the disorder each year. There are probably more, but 12,000 are directly related to COPD. Unfortunately, 1,400 people die from COPD every year. To put that in perspective, approximately 1,400 people die annually from lung cancer, which we now know is the biggest cancer killer in the country. COPD, therefore, is a significant cause of morbidity and mortality in patients. It is probably the most frequent reason patients with chronic diseases are admitted to hospital, and is a frequent cause of readmission to hospital. Many of my patients with COPD require multiple admissions. Given that the average length of stay of patients in hospital is approximately nine to ten days, it involves their being in hospital for a quite considerable period.

COPD is predominantly caused by smoking, but not all cases are related to smoking. We have heard already that alpha 1-antitrypsin deficiency can be a contributor. People who are born prematurely may have difficulty with it. It is associated with deprivation and tends to reflect poor nutrition, for example. Unfortunately, smoking is a considerable factor. Many patients with COPD are ex-smokers. An individual who has given up smoking for ten or twenty years may have done enough damage to his lungs to present with COPD. It is not fair to say the problem can be addressed by stopping smoking. Many people who have chosen to give up smoking are inflicted with the disease some time later.

Why is there so little public recognition of the disease? The name is a problem. We have already heard about bronchitis and emphysema. COPD is, pathologically, bronchitis and emphysema. It is a kind of catch-all phrase for chronic bronchitis and emphysema. It is difficult for patients to remember the terms "COPD" and "chronic obstructive pulmonary disease". The disease takes decades to develop and patients sometimes attribute symptoms to the ageing process. They may say they are short of breath because they are getting older but it is actually because their lungs have been damaged. COPD is more common in poorer social groups. I do not need to tell members that poorer social groups tend to receive poorer health care and poorer solutions to their problems. The chronicity of the disease is associated with the degree of guilt. Perhaps people are less likely to demand resources for smoking-related problems. People get used to the disease developing slowly and just do not seek resources.

Along with certain colleagues, I did not study respiratory medicine to look after COPD patients; I was interested in the more exciting end of respiratory medicine. However, I ended up working with COPD. Nihilism has been part of the problem until very recently. Doctors and nurses were not really interested in looking after patients with COPD, and this reflected the public mood. That is changing for the good, and bodies such as the Irish Lung Health Alliance and the Irish Thoracic Society are certainly pushing the agenda, but there has been, both in Ireland and elsewhere, a lack of awareness of and interest in dealing with the problem.

We have heard about various patient advocacy groups today. As of yet, there is not a properly formulated group to support COPD patients, who amount to a considerable number. Mr. McGloin, who travelled here this morning from Sligo, is the chairman elect of COPD Support Ireland, which is in the process of being formed. There has been significant neglect regarding this very common and troublesome disease.

One of my roles is that I am the clinical lead for chronic obstructive pulmonary disease, COPD, in the Health Service Executive's clinical strategies and programme directorate. This has been established for several years. It was originally under Dr. Barry White and more recently under Dr. Áine Carroll. The idea behind the programme is to reduce morbidity and mortality from COPD through several initiatives.

The COPD outreach service allows patients who would ordinarily be admitted to hospital with COPD exacerbations to be dealt with at home or discharged from hospital earlier. This has been pioneered by Professor Gerry McElvaney's colleague in Beaumont Hospital, Professor Richard Costello. This outreach programme is being rolled out in 12 other sites across the country. We have had great success so far but we have had to start in several places with limited staff because of the recruitment pause which has shackled us somewhat.

Many COPD patients can be treated in primary care centres. We have been examining strategies to get spirometry out to primary care centres so diagnosis can be made at that level. We also have pulmonary rehabilitation, an integrated programme for looking after patients with COPD. It primarily revolves around exercise and is a very beneficial programme. We have been trying to spread this programme around the country.

Cost effectiveness is important for the COPD programme. With the events of yesterday bringing money to the fore again, we need to show we are producing benefits for the taxpayer. Already the programme has demonstrated a reduction in the average length of stay in hospital for patients. Between 2008 and 2011, we reduced the number of bed-day units required for patients with this disease by 10,000. We are demonstrating some return on investment for the taxpayer.

Chairman

Thank you, Professor McDonnell. I call first on Deputy Colreavy.

Deputy Michael Colreavy

I thank the delegations for attending today's meeting. I was taken aback at some of the presentations because, quite frankly, I was not aware of the level and prevalence of lung disease in Ireland. Deputy Ó Caoláin, who normally attends this committee on behalf of Sinn Féin but is in Stormont for an examination of the health services from a North-South perspective, would probably have been more aware of it than me. I commend the work the various groups are doing in highlighting this issue and making the public and the Government more aware of it.

Do we have any longitudinal studies to help us understand why Ireland has the fourth highest rate of asthma in Europe? Has the prevalence of asthma increased or decreased over the past ten, 20 and 30 years? Why does one in five of our children suffer from asthma? Why are those from poor educational backgrounds four times more likely to have the disease? Why does the rate of prevalence move from 20% of children to 10% of the general population?

Do people who suffer from chronic lung disease have automatic entitlement to general practitioner, GP, pharmacy and hospital services and medical cards? Is testing for chronic lung disease part of the routine child health assessment programme or is there a test that can be applied to infants and younger children? Would it help if this were to be a routine part of the infant and child welfare programme? Do we have any information on the impact of early diagnosis and treatment of lung disease from a health, well-being and health economics perspective? Little enough was said about prevention and health promotion except for cigarettes. Is lung disease a hereditary problem and, accordingly, something we cannot do anything about?

Senator John Crown

I thank my colleagues and sundry other allies for attending this meeting. It was great to hear their presentations. It is recognised there are disparities in smoking across the socio-educational spectrum. Does Dr. Edward McKone believe there are other factors which determine the disparity of the incidence of lung disease across social groups? How do we stack up in international comparisons in terms of the number of respiratory consultants per head of population? I would guess we are we somewhat worse than the UK and disastrously worse than other places in the world, considering Britain and Ireland have disastrously low levels of specialists in most specialities.

It is frequently suggested that asthma is a disease where the advances in knowledge and treatment have not necessarily percolated to the front lines of treatments and that substantial further improvements could be made if doctors were to follow the best existing practice and best medications. What is the Asthma Society of Ireland's take on this? Are we doing okay on that?

Does Cystic Fibrosis Ireland believe an adequate number of beds have been built in the cystic fibrosis unit in St. Vincent's to comply with international guidelines for beds per sufferer in the population? All the groups harbour under somewhat of an extra burden in that people believe lung disease is caused by smoking and, therefore, it is the fault of smokers who contract such diseases. It is a far more subtle and complex problem than that, however. Notwithstanding the fact that a significant part of lung disease is not related to smoking, if we were to have a complete disappearance of smoking as a habit, what would be the impact on the demand for respiratory services? Saying that, I am asking everyone to check the website, www.sos2030.com, which we set up recently with the ambitious plan to get EU governments, the European Commission, etc., to buy into the idea that we will pick a date in the future which from thereafter it will not be legal to do for-profit commerce in tobacco.

Chairman

Again, I thank Senator Crown for this meeting but also for being present despite having had no sleep due to the late sitting of the Seanad this morning. I call on Deputy Regina Doherty.

Deputy Regina Doherty

I concur with Deputy Colreavy in that I had a view about what lung disease was and it was certainly not like what was presented this morning. I thank the delegations for their presentations in this regard. Ms Sharon Cosgrove spoke about the inequality of treatment on a national basis.

What is causing that and what needs to be done to rectify it? Also, she stated that certain parts of Ireland do not have access to the drugs that are of considerable benefit. Why is that so?

Mr. Watt spoke of the 13 adults beds that are desperately needed in Beaumont Hospital. Has an application been made for funding by his organisation to the hospital management? Has the application by the hospital management been made to the RDO? Has it even been applied for in the service plan? Was it ever in a previous service plan and was it that it merely did not get delivered? Where stands the matter?

With regard to the Alpha One Foundation, while I will not admit my age - I am not young anymore - I have never even heard of the Love Your Lungs campaign. What are we doing wrong? I do not mean The Alpha One Foundation. What is the Department of Health doing wrong for everybody in the country to know how to love their lungs? We all will be aware of other campaigns. Obviously, this one seems to have been missed. When one looks at the figures, they are far more stark than I would have considered. It is something we need to address. Would they give their advice as to how we or the Department can help get that campaign more exposure?

I have two questions for Mr. Smith. He spoke of St. Joseph's in Raheny being closed since December last. Was it subject to a HIQA inspection? Was that why it was closed?

Mr. Dan Smith

I have no idea. I just heard-----

Chairman

There will be a chance to respond to questions.

Mr. Dan Smith

I apologise.

Deputy Regina Doherty

Mr. Smith might tell us why. He also mentioned, and I hope I picked this up correctly, that apart from the statistics on male and female adults, a growing number of children are presenting. Why is that so? Is it that there is more screening of children or is there another reason it is occurring in children of which we were not aware previously?

This may be a silly question for Mr. Smith because there may not be only one answer. What causes it? Is there a different cause in adults than in children? Is it something we bring upon ourselves? Is it something with which one is born? Would Mr. Smith tell me briefly or point me in the direction of where I can find more information on what causes it?

Professor McDonnell spoke about the bad reputation of the patients who suffer from COPD. Obviously, we need to change that. What can we do to change that, particularly in view of that the fact that it affects even those who have reformed? I appreciate the majority of those who get it are either smokers or former smokers. Are we still painting with the same awful brush those who have been brave enough to give up but who, 15, 20 or 30 years later, still catch COPD? We should not be treating them in that way. Most smokers do not want to smoke and find themselves in the difficult position of not being able to give up. Such treatment of them is unfair. How could we change that?

Deputy Catherine Byrne

I thank the groups for their presentations. It is a pity they all had to come in together because there is a lot of information there. I, too, will suck it because some of the questions have been asked.

The first speaker referred to the impact on those with lower education levels and those with lower socioeconomic backgrounds, diet, etc. I would be interested in hearing a little more in that regard. It astounds me that, according to the asthma association, one person dies a week from an asthma attack. I did not realise that.

As somebody who has dealt in the past with Dublin City Council, I am still astonished when I deal with queries from those who have housing difficulties that asthma is not registered as a medical condition with the local authority. If there is water running down the walls and there is damp on the ceiling, it is still not classed as living in poor conditions. When I go to any of the housing sections in Dublin City Council, it is astonishing that a medical officer can state that the conditions in which tenants live, particularly very bad conditions in many of the old flat complexes, do not contribute to the serious illness of asthma. I merely want that noted.

As somebody who has had the trauma of losing a loved one who had a donor card and whose organs were donated, I understand it is a terribly traumatic time for the family in general and that the only comfort at the end of it, after a couple of months or maybe even after a couple of years, is that the loss of the loved one has led to giving life to others. I am concerned about how people view being a donor, particularly how it is pictured. How does one advertise for donors? I am aware that one can tick a box on one's driving licence to be regarded as being a donor but there is a need for the process to be a more user-friendly. There is a need to go into schools and talk to young people. There is a need to go into the colleges.

Not everybody dies in road accidents. We just happened to have a family member who did. There could be a significant link with young people if they were given proper information. I suppose one aspect that struck us when we were left with that dilemma was whether one should sign this piece of paper or make the decision to leave one's loved one in a state of coma because he or she might come out the other end. One hears such stories now and again. What must form part of the education of asking people to be donors is the sensitivity of the tests concerned and the need to take in as an individual when somebody says there is nothing there. That goes for those wanting to be donors as well.

Will the witnesses provide evidence of being able to portray people wanting to be donors. It is important that such a message goes out, particularly to young people and families, and it needs to be provided in colleges, schools and workplaces such as here. It is not enough that one is asked to take a card at a counter in a shop and tick a box on that card. There is a need for something more than that.

Deputy Sandra McLellan

I thank the groups all for coming here this morning. Like my colleagues, I had a different perspective on lung disease. In my naivety, I would have thought that most of it could be put down to smoking.

Most of the questions have been covered. On COPD, there was reference to the fact that the narrowing of the airways is different from asthma and the witnesses spoke of running an awareness campaign, but they stated that only 50% of general practitioner surgeries can diagnose COPD. Even if they run the campaign and people go to their general practitioner, given that they generally go to the same general practitioner, how would they be diagnosed?

On the Alpha One Foundation and hereditary emphysema, the witnesses stated that in Ireland, one in 25 is a carrier. Is there a database of carriers, how does one know he or she is a carrier and how does one go about early detection?

Deputy Mary Mitchell O'Connor

I thank the groups for the presentations. They spoke of the Love Your Lungs campaign, sleep apnoea and the various different diseases. Have they evidence of what has worked in other countries? Deputy Regina Doherty stated she has never heard of the Love Your Lungs campaign. I have not either. There is something wrong. It is probably our fault as much as the foundation's. What can we here do to help the foundation? I also thank Senator Crown for informing the Joint Committee on Health about lung diseases today.

Chairman

Perhaps Dr. McKone will begin the responses.

Dr. Edward McKone

I will start with two issues that were raised: the impact of socioeconomic factors on lung diseases, which is certainly worth elaborating on, and Senator Crown's question on staffing and manpower. As I mentioned, lung disease is much more common in persons from lower socioeconomic backgrounds. In the past that has been largely attributed to the belief that those who are poorer and from lower socioeconomic backgrounds tend to smoke more. There is a great deal of information which shows that although smoking is an important contributor, it certainly is not the biggest one. The most compelling data show, first, that diseases that are not related to cigarette smoking, in particular asthma and including cystic fibrosis, CF, are heavily influenced by socioeconomic factors. Survival around the world is much lower, for example, in North America, if one does not have private insurance. Inner-city asthma is a massive problem and it is not smoking related; it is due to asthma and other environmental factors. Therefore, we know that socioeconomic factors independently affect conditions like asthma and CF.

Irish data were collected for COPD on world spirometry day in June, when we offered free lung function testing to 750 people around the country. Half of these individuals were never previously diagnosed for lung disease. One in seven of the latter cohort had airflow obstructions suggesting asthma or COPD and one in five had abnormal lung functions. This highlights the prevalence of the condition. We also asked people to complete questionnaires on their smoking habits and educational backgrounds. Education level is one of the best determinants of socioeconomic background. It is better than asking people about their incomes or jobs. We found that lung function was on average lower in smokers, as one would expect, but also that socioeconomic factors had an independent effect on lung function. There was a significantly lower level of lung function among people who were not educated beyond junior certificate level.

Clearly, however, this is not simply an educational issue. Other factors include awareness and getting out the message that people should do something about these symptoms. Access to health care is also an issue. We have a good public health service but there are limitations and access can be disparate. Environmental factors must also be considered, including housing and jobs that entail exposure to dust and fumes. These factors cause lung disease in ways that are not related to smoking. Healthy air is also relevant. If one lives in the centre of a city in a poor environment with heavy traffic, one is exposed to pollutants. We would like to do more work on the multitude of factors involved. We spend considerable amounts of money on drugs but if we could find a way to bridge the outcomes among people from different socioeconomic classes, we could probably make a bigger impact than through expenditure on medication.

In regard to manpower, 50 public consultants work in the area of respiratory medicine in this country. The European Respiratory Society plans to publish a White Paper on the issue later this year. We tried to get access to the hard data but we do not have them yet. As Senator Crown noted, we fare badly compared with other European countries in terms of delivery of respiratory health care. That includes consultants, respiratory nurses, respiratory scientists, physiotherapists and primary care provision. There is currently one consultant per 80,000 in Ireland, compared with one per 50,000 in the UK. Indeed, the UK intends to further improve its ratio by employing additional consultants. We would need to appoint an additional 30 consultants to bring our ratio to the UK level. We also need to increase substantially the numbers of respiratory nursing staff, who are critical to carrying out breathing tests to identify lung disease. This issue is being addressed by the asthma programme and Professor McDonnell's COPD programme.

Professor Gerry McElvaney

We have a good idea of how many people in Ireland have alpha 1- antitrypsin deficiency. We estimate that 170,000 people have the MZ form and more than 3,000 have the ZZ form. If somebody who is a ZZ smokes, he or she will develop severe emphysema in his or her 30s and 40s. Even a non-smoker will have a good chance of developing emphysema. The advantage of our targeted early detection programmes is that we know from our own data that people who are found to have the condition can be persuaded to stop smoking and institute lifestyle changes that help to prevent progression of disease. We have set up a targeted detection programme in Beaumont Hospital which is funded by the HSE. The funding has been cut but it is still functional. We can offer a free test to everyone in the country for alpha 1- antitrypsin deficiency. We have rolled out the programme to more than 26 hospitals and GP surgeries across Ireland. A GP in west Cork can now send a letter to us in Beaumont and we will send a kit so that he or she can take a blood sample from the patient, put it on a filter paper and return it to us for diagnosis. We will then give the patient an appointment at our outpatient centre in Beaumont for advice on the condition and lifestyle improvements that can help. If we can detect the condition at an early stage, we can preserve lung function and prevent deterioration leading to lung transplants. More important, it is a good example of a public system that works.

Deputy Sandra McLellan

Does the centre treat children as well as adults?

Professor Gerry McElvaney

It is for adults and children. It is important for children because 10% of severe alpha 1 cases present in childhood with severe jaundice. Of such children, one third will require liver transplants in the first year of their life. Early diagnosis is extremely important.

Mr. Dan Smith

The sleep clinic was transferred to St. Joseph's in Raheny because of problems finding beds in Beaumont. It was funded entirely by an outside agency on a charity basis and a five bed day ward was converted into three private rooms. The condition is that only public patients can be treated or diagnosed in the unit. Private patients are not allowed in. A control room was also installed. The individual donor also wrote a cheque for €150,000 as a downpayment on three years' salary for a respiratory scientist to man the unit, with a promise to write a further cheque to meet any shortfall after two years. The HSE had no input into this donation. I do not know what has happened since but the sleep clinic was closed in mid-December and no sleep tests have been carried out there. Nobody seems to know what is happening. I have written to the HSE.

Chairman

Will Mr. Smith supply the committee with a copy of that letter?

Mr. Dan Smith

I will do so. In the case of St. Joseph's, I have received a response which was passed on to another area manager and I presume something will be done. I have heard nothing in the case of St. Vincent's, however. St. Joseph's is an effective sleep clinic with a high throughput. There is a small clinic in Our Lady of Lourdes Hospital in Drogheda, a unit in Blanchardstown which cannot get beds and a very small unit in Cavan. All these additional things are coming on stream. An awareness campaign has been suggested but the problem is that it would clog up the waiting list in the absence of services. That would defeat the whole purpose of the exercise. This is why a national strategy is required.

I will explain some of the reasons children develop sleep apnoea. Down's syndrome is prevalent in one child per 1,000 and sleep related breathing disorder, that is, sleep apnoea is present in 70% to 100% of such children. They are at high risk of pulmonary hypertension, especially in cases of coincident heart disease. For neuromuscular disease, the prevalence is one in 3,000 and 42% have a prevalence for sleep related breathing disorder. It is difficult to detect clinically but it reduces life expectancy and is reversible by treatment. Craniofacial abnormalities have a prevalence of one in 7,000. Depending on the severity, the chance of individuals with this condition having a sleep related breathing disorder is up to 100%. Achondroplasia is prevalent in one in 25,000 children and has a 48% prevalence rate for sleep apnoea. Mucopolysaccharidosis is prevalent in one in 40,000 children and has a greater than 90% prevalence of sleep disorder breathing. Prader-Willi syndrome is prevalent in one in 52,000 children and has a 25% to 75% prevalence rate. These figures are from Crumlin hospital. Approximately 0.5% of children are born with sleep apnoea.

The condition has not been clinically proven beyond doubt but one or two small studies have indicated that while it is not genetic, it is hereditary. Much depends on the craniofacial build of an individual's face, particularly where the jaw line is receding. In the past, obesity was blamed for the condition and patients were told to lose weight, but an increasing number of thin people are developing sleep apnoea. As we age, the tissue in our airways grows weaker and starts to collapse and close. Sleep apnoea develops when the airway collapses completely. One can imagine the effect of this on the rest of the major organs.

One's brain goes into a total panic, one's heart starts to beat faster and one is at a high risk of stroke because snorers traditionally get a thickening of the carotid artery. All of a sudden, there is a sudden rush of blood to the head. If there is a weakness in the artery, the person will suffer a stroke. There is a big pressure on the kidneys and other organs, as well as the threat of hypertension.

Sleep apnoea is unlikely to kill a person but what it does will kill. A road traffic accident has been costed by Government agencies at €1.5 million. It is said 20% of traffic accidents are caused by sleepy drivers. There are three categories of sleepy drivers. The first is an untreated sleep disorder, the second is young aggressive male drivers and the third is professional drivers tying to hit deadlines. If that is cut in three and one life is saved, €1.5 million could be put into this programme, which would more than fund it. It does not require big bucks. It is about getting the right people together to put the strategy together. There are methods of funding these initiatives but we have to have a national strategy. It is not about money; it is about putting the brains together and getting a strategy together. It is the same for all long-term health issues. It is about putting a simple strategy together.

Dr. Basil Elnazir

Deputy Colreavy asked about asthma incidence in Ireland and the fact that we rank fourth in the asthma world league. We do not know why asthma is on the increase. Is it an artifact of better recognition in that we know more about asthma and how to diagnose it? Asthma is unique in that it is an interplay between genetics and environment. The genetics load the gun and the environment pulls the trigger, which is a simple way of putting it. However, there are many other factors and attributes. Obesity, for example, is associated with increased asthma attacks.

Deputy Michael Colreavy

Has asthma incidence increased rather than reduced over the past 20 to 30 years?

Dr. Basil Elnazir

It has increased.

Deputy Michael Colreavy

And we do not fully understand why.

Dr. Basil Elnazir

We do not fully understand that. There are many interactions and chemicals around us. The environment we live in, the quality of air, housing conditions and pollution are all factors. Deputy Byrne mentioned mould. I am a paediatrician and I sit in my clinic every day writing letters to the city council to remedy situations where there is mould on the bedroom walls and window sills and so on.

Chairman

Has the society spoken with local authorities? More and more people are coming to public representatives with respiratory or chronic lung issues. Surely the local authorities must acknowledge the prevalence of asthma if the incidence is increasing at the level Dr. Elnazir says.

Dr. Basil Elnazir

All I can do as a clinical person is write a letter saying this definitely impacts negatively on the welfare of the child and it will lead to exacerbation of asthma attacks, hospital admissions, time off school, time off work for the parents and so on. As the Deputy said, the local authority staff will look at it and the parents will come back and say nothing happened after the letter I wrote and ask me to write another letter. This happens every day in clinical practice.

One in ten adults and one in five children in Ireland suffer from asthma. This is a difficult area for us as a doctoral practice in paediatric medicine because many other conditions in the first five years of life can confuse the diagnosis of asthma. Many viral infections can result in symptoms similar to asthma and, on many occasions, we treat them with asthma medication and that leads to people using the common phrase, "He had asthma but he has outgrown it". While the incidence among children is one in every five, there is a grey area. If I were to base it on clinical practice, it would be probably one in seven or one in eight and this becomes one in ten later in life.

Professor Crown asked about the guidelines. The society has developed an e-learning programme in collaboration with the Irish College of General Practitioners, ICGP, and while the uptake is not great, we try to make sure we are standardising the care of asthma in Ireland but we need to do more work to makes sure this filters all the way down and that primary, secondary and tertiary care is standardised according to the guidelines.

Deputy Doherty asked an important question about inequality or inequity in treatment. The medicine, Xolair, is like a key in a lock. If the key fits in the lock in the cell, it excites a reaction and releases many substances that can cause asthma symptoms - difficulties in breathing, wheezing and shortness of breath. This medicine targets the key and, therefore, it stops the key going into the lock. It is not suitable for every asthma sufferer but it is definitely suitable for what we call severe allergic asthmatics and, in Ireland, according to figures we have, 450 people qualify for the use of the medicine. It takes the form of an injection under the skin, which must be taken every two to three weeks. There has been significant improvement, according to a study performed by Professors Lane and Costello, which highlighted a significant reduction in exacerbation and improvement in quality of life. We do not know why there is an inequality but the medicine is not covered by any of the schemes or high tech programmes. One of our colleagues treating adults in Cork has 40 eligible patients who cannot secure funding to start treatment.

Asthma is a simple condition, if managed properly. One of the parents who tragically lost her daughter wrote "I wouldn't have thought that my Tricia would die of an asthma attack in a million years. I am paying a very high price for something I didn't know. I am living without Tricia and that is just a nightmare". Education, therefore, is key among all sectors of society but particularly among the patients themselves. That brings us to the national asthma programme. We urge that this be expedited because this will bring everything back to the level of the patient and primary care. There must be education with a properly resourced programme with asthma nurses. It has been shown time and time again that the role of nurses in the management of asthma, particularly in paediatrics, is huge.

Chairman

What is the estimated cost of Xolair to the State?

Ms Sharon Cosgrove

It is €14,000 per patient per year. We estimate there are approximately 250 people who are not accessing it. That equates to €3.5 million.

Chairman

In the context of further progressing this issue, has there been correspondence or liaison with the HSE or the Department?

Dr. Basil Elnazir

The national asthma programme and the national centre for pharmacoeconomics are conversing and there has been toing and froing through e-mails and so on. Dr. McKone is involved in the discussions on the programme.

Dr. Edward McKone

We are meeting with Professor Michael Barry from the national centre for pharmacoeconomics in the next few months to discuss it. Dr. Pat Manning, who is leading the national asthma programme, has scheduled a meeting for us, which I am sure the ITS and ASI will be involved in.

Deputy Regina Doherty

People who are taking Xolair are paying for it privately and receiving it through their own medical insurance or their own purse. Is it because of the State that other sufferers are not being treated with the drug?

Dr. Basil Elnazir

Certain institutions are providing funding for patients to receive-----

Deputy Regina Doherty

Which ones?

Dr. Basil Elnazir

For example, some of the Dublin hospitals have provision for that.

Deputy Regina Doherty

I am sorry to be pedantic but that means that the Department has sanctioned the drug and cleared the finance for it to be delivered through the medical system.

Dr. Basil Elnazir

For certain hospitals.

Chairman

Are those patients public or private?

Deputy Regina Doherty

It does not matter.

Chairman

The Deputy is correct that is should not matter.

Dr. Basil Elnazir

It is a mixture of both.

Senator John Crown

Is this an oral medication?

Dr. Basil Elnazir

No, it is a subcutaneous injection.

Deputy Regina Doherty

When the Department sanctions a drug, it cannot say it can only be provided in three hospitals and not the other 32.

Chairman

Is it a pilot scheme?

Ms Sharon Cosgrove

It becomes a local decision for the hospital and its own pharmacy budget.

In Cork, the Mercy Hospital sanctions it and states it can afford it under its budget while Cork University Hospital states it is too expensive at €14,000 a year per patient. There is inequity because it is not covered under any of the reimbursement schemes and a hospital cannot get a reimbursement for its cost. Therefore, it becomes a local decision.

Senator John Crown

I ask the witnesses to forgive my ignorance. Is this subcutaneous injection one which people receive as outpatients?

Dr. Basil Elnazir

It can be administered to an outpatient, but the person would be monitored for a couple of hours as there is a risk of anaphylaxis, after which the person can go home.

Senator John Crown

After the first dose or on a repetitive basis?

Dr. Basil Elnazir

On a repetitive basis.

Ms Kitty O'Connor

Every time.

Senator John Crown

Every time it is taken it is administered in the hospital.

Dr. Basil Elnazir

Every three or four weeks in the hospital.

Deputy Regina Doherty

If one was a patient in a hospital in Cork which does not have access to the drug, could one be referred to Beaumont Hospital where it is administered?

Chairman

The Mercy Hospital in Cork administers it so can the patient be referred three miles up the road from Cork University Hospital?

Ms Sharon Cosgrove

It does not work this way in practice.

Senator John Crown

Evidence shows it decreases the frequency of admission to hospital with complications.

Ms Sharon Cosgrove

Absolutely, by approximately 67%.

Senator John Crown

The problem with the National Centre for Pharmacoeconomics is that I believe it does not take the most nuanced view of the totality of the health care costs associated with a new product when working out how much it costs and I am sick of it. The case one needs to make is that it can decrease resource utilisation, but this case may need to be made to a body other than the National Centre for Pharmacoeconomics.

Professor Tim McDonnell

I have six patients on Xolair and patients have responded to treatment. I am not allowed to put any more people on the drug and the hospital is actively trying to stop me using it, not in a nasty way but it is very much aware of how much it costs.

Chairman

Is this on the basis of cost alone?

Professor Tim McDonnell

Yes. Recently I was referred a patient who relocated to the Wicklow-Dublin area from Galway who was receiving the drug in Galway. I cannot start the patient on the drug in my practice in Dublin. The patient must return to Galway every two weeks to get it.

Chairman

This is absolutely crazy.

Professor Tim McDonnell

Deputy Colreavy spoke about social deprivation and the link to respiratory diseases. It is particularly acute in chronic obstructive pulmonary disease, COPD, because of co-factors with smoking and a past history of smoking clearly related to deprivation. Early intervention makes a difference in these diseases and people in lower socioeconomic groups have poor access to health care and we know this. On the other side of the coin, as one goes through life with COPD one falls down the economic ladder because one suffers from winter infections, one cannot turn up for work, one gets passed over for promotion, one loses one's job and one must go on disability benefit. It has a social impact as well as being promoted by social factors.

Deputy Doherty asked about nihilism. Perhaps I was nihilistic about it. A huge positive message is coming out at present about COPD. Mr. McGloin has been on oxygen for six years and despite this he will take on running the support group when we get going. An issue is slowness with regard to establishing a COPD support group. This is an international issue not just an Irish one. Very few good COPD support groups exist in other countries. The British Lung Foundation is an umbrella organisation which looks after COPD. The United States has a separate COPD support group. The factors for this include that many of the patients are socioeconomically deprived and by the time many of them are aware of the problem and want to do something about it, they are significantly disabled. There is also a little bit of embarrassment. I have known politicians with the disease who did not want to be involved with a support organisation. There is a huge positive message because the drugs have improved and improvements are being made. COPD tends to be at the bottom of the queue.

We are dealing with real numbers in terms of getting the programme going. We can say we have 100,000 patients and we are fairly confident 200,000 people have not been diagnosed, which comes to Deputy McLellan's point about making a diagnosis. We know spirometry is available in some general practices. It is a relatively simple test but it requires training. This training goes to practice nurses who get pulled to look after all of the other issues. We are running a course at the moment, which is accredited through DIT and has European accreditation. However, we have a feeling some of the people who do the course and go back to their practices will get pulled to look after diabetes patients, blood pressure monitoring, vaccination and everything else. The COPD programme may have to consider something else but in the current climate we went for the most cost-effective option available. We probably require outreach spirometry from hospitals. Deputy Doherty spoke about experience from other countries. In Scotland spirometry is done through outreach, as is the case in Denmark and the Netherlands. Of course this costs money.

Deputy Byrne mentioned housing. Anecdotally I have been examining requests for disability stickers for patients with bad COPD. Dún Laoghaire-Rathdown County Council did not provide them for lung disease for a long time and one had to write letters and create hassle, whereas those with cardiac disease automatically received a sticker. Most of those respiratory patients seeking disability stickers were COPD patients, but patients with respiratory disease in general suffered also.

Chairman

Has this mindset changed sufficiently?

Professor Tim McDonnell

It is why we need a specific support group. I have probably beaten down those in Dún Laoghaire-Rathdown County Council at this stage but what is happening throughout the country? Committee members will know that some requests are unsustainable, but people with COPD who genuinely have a disability do not get stickers. I am sure many hard-pressed doctors and health care providers will write "cardiac" on the letter so the patient will get it. This may be happening. A COPD support group, which I hope we get up and running, will address this.

Mr. Philip Watt

I will answer some of the questions on cystic fibrosis. Senator Crown raised the issue of access to beds in St. Vincent's Hospital prior to Christmas. Our association raised this in the public media and it is a good example of how effective the work of the committee can be, as calling the management of St. Vincent's Hospital before it to account for its actions was very helpful. I am glad to say since the issue was raised by our association and the committee there have been no problems in St. Vincent's Hospital and people have had access to the beds. I acknowledge Dr. McKone who has played a very important role as a clinician in ensuring this happened. We will continue to monitor matters very closely and we are not complacent about it at all.

Deputy Doherty asked about the Beaumont Hospital inpatient beds. We are glad to say Liam Duffy at Beaumont Hospital has agreed to put the number of beds into the development plan for the hospital. We would very much welcome a letter from the committee to the HSE regional director of operations and the hospital to state it should be a priority. It would be very helpful in getting momentum. I acknowledge Professor Gerry McElvaney who has played a leading role in pushing the issue. He is a cystic fibrosis consultant in Beaumont Hospital.

Deputy Byrne made a very important point on health promotion and donor awareness. Donor awareness is left to NGOs such as the Irish Kidney Association and ourselves with virtually no support from the HSE. In Britain advertisements are shown on television encouraging organ donor awareness and there is a national register on which one can donate one's organs on line. None of this exists in Ireland. It is a disgrace.

Chairman

We hope to examine this later in the year as part of our work programme.

Mr. Philip Watt

Fantastic. Perhaps I will come before the committee wearing a different hat to discuss it. Deputies Colreavy and Doherty mentioned they had not seen the love your lungs campaign. It is because it is left to us and we have no money. We try to have events in Buswells Hotel. There is virtually no interest from the HSE and the Department of Health, never mind public support.

Chairman

What does Mr. Watt mean that there is no interest?

Mr. Philip Watt

We have raised the issue with them, told them what we were doing and asked them to come on board. We asked if we could have links on their websites or minimal resources. There was not even basic interest. We are doing the job of HSE.

Their approach is completely and utterly unacceptable. I am asking this committee, the HSE and the Department of Health to give substantial support for this programme. Even if we do all the work, they could at least support it. It is a no-brainer and should be expected as a bottom line.

Deputy Regina Doherty

Who is the clinical lead in the Department or the HSE for lung-related issues?

Chairman

I will bring in Deputy Colreavy now as he has indicated.

Deputy Michael Colreavy

I wish to raise two issues although they are not questions for the witnesses present. I always understood that one of the underlying founding principles of the HSE is that access to health care is based on medical need, rather than ability to pay or geographic location. We now learn that access to health care is based on need, geographic location and a hospital's pharmacy budget.

Chairman

To be fair, that would not be entirely correct.

Deputy Michael Colreavy

We need urgent clarification from the Department on that.

Chairman

To be fair, that would be a misrepresentation of the HSE's policy.

Deputy Michael Colreavy

According to the evidence we have heard here today, required medication is or is not being made available depending on a hospital's pharmacy budget. We need clarification on this.

Chairman

I was going to suggest in my closing remarks that the committee will take up this issue with the HSE. We can place on the agenda questions on this particular issue to the HSE from Deputy McLellan, or any other member, as part of the quarterly meeting.

Deputy Michael Colreavy

I also think the point that Mr. Watt made needs to be seriously addressed. It is wrong that people who are effectively doing the HSE's work do not have the active support of the HSE in doing it.

Chairman

What is it that the HSE is not doing for the groups represented here today? Perhaps Mr. Watt can flesh that out in his concluding remarks.

Dr. Edward McKone

I want to make a comment which will give the committee a sense of the challenges we are facing. We have presented the committee with data on the importance of lung disease. That has been communicated very well. The HSE has recently published a health promotion strategy document which talks about the crises and public health challenges being faced by the Government, yet there is no mention of lung disease in it. They talk about coronary artery disease, diabetes, obesity and smoking. We are trying to get across that smoking will impact on respiratory disease but that there is a substantial morbidity that is not smoking-related. We need advocates therefore to ask the HSE: "Where is respiratory disease when you're making these policy documents?" The HSE should focus on it and have an independent approach to it so that we can work on trying to improve outcomes for this huge patient population. One in five is the number we have heard repeatedly. We need to advocate to get the HSE to recognise that and work with us to develop a strategic document to move forward.

Mr. Michael McGloin

I would like to lobby for a lot more awareness of chronic obstructive pulmonary disease, COPD. As we have discovered, awareness is the key to getting the word out. If ten people on the street were asked about COPD, perhaps two might have heard of it, so awareness is important.

We do not have an outreach programme in Sligo but it has been rolled out in 12 hospitals around the country. Having met people involved in outreach programmes, I know that they do work. I am a patient myself and rather than being in hospital for ten days, I would be quite happy to be at home in my own environment, with less chance of picking up hospital bugs.

I would also push for help with more pulmonary rehabs around the country because they only exist here and there. I have gone through four of them and they definitely work.

Professor Tim McDonnell

There was a question on what the HSE is doing about respiratory disease. It has got a number of clinical programmes devoted to respiratory disease, including COPD, asthma and cystic fibrosis. There are those three but, as we have heard today, there are gaps in other areas. We have not heard about issues relating to sleep or lung diseases. There is nobody here today representing tuberculosis, which is another area. To revert to Deputy Colreavy's point, this disease of deprivation has perhaps not had the attention it merits.

Chairman

I wish to thank everyone for attending the committee and for their presentations. It was an interesting, worthwhile, challenging part of our process of committee meetings. A clear message has emerged from this meeting - not least the fact that we must have a clear strategy and a joined-up approach with the Department of Health and the HSE. In addition, we must tackle the stigma that it is a disease of the deprived and poor. We need to change the mindset that respiratory diseases, including lung disease, arise because of smoking. There is an awful lot more involved than that, so we need to change that message.

Deputy Regina Doherty

I am sorry to interrupt you, Chairman, but I do not want to make a wrong assumption. Is the committee agreeing that it will send a letter to the Department of Health?

Chairman

I will make that the next point, which is a proposal.

Deputy Regina Doherty

Can we also include the regional director of operations, or RDO, of Dublin North East with regard to the 13 beds in Beaumont Hospital?

Chairman

If the meeting agrees, we will take up a number of issues with the HSE, including sleep apnoea. Second, we will also write to the Department and the HSE on Deputy Doherty's proposal on medication. Third, we will write to the RDO of Dublin North East regarding beds in Beaumont Hospital. Is that agreed?

Deputy Regina Doherty

Agreed.

Chairman

I also wish to thank Senator Colm Burke, who is suffering from sleep deprivation, for being here this morning.

Senator Colm Burke

It is the same problem that junior doctors have.

Senator John Crown

A quick straw poll of our guests. Would they, in general, be in favour of the idea that the precincts of the national Parliament should be a smoke-free zone both inside and outside?

Chairman

I will not allow Senator Crown to put that question.

Senator John Crown

Would anybody like to say "No"?

Chairman

That is not least because a number of members of the committee might feel free to interject. I sincerely thank everyone for coming in this morning and for their presentations. This is part of a process that we will engage in. Senator Crown has been active in promoting a different strategy on how we see life, which is challenging for members of the committee.

Before adjourning, I would remind members that at 9.30 a.m. on Thursday, 14 February Operation Transformation personnel will be making a presentation to the committee as part of their television programme.

Senator Colm Burke

Are we agreed on the junior doctors' issue, as I have raised it?

Chairman

We received correspondence which was too late for today's meeting. It will be discussed as part of a strategy to have hearings on the issue of non-consultant hospital doctors, hopefully before the end of May if not sooner. It is a question of finding time in our calendar to do that.

Senator Colm Burke

I thought we had agreed to have it on a Tuesday in particular.

Chairman

We are hoping to do that. We have a number of imminent business items to deal with and it is a question of getting them together. Senator Burke should talk to the clerk afterwards. We have received correspondence from Ms Shirley Coulter, assistant director of industrial relations with the Irish Medical Organisation, which was too late for this meeting. It will be on the correspondence list for next Thursday and we hope to put in place a strategy to work on this. If Senator Burke has any suggestions before the next meeting, he can talk to the clerk.

Senator Colm Burke

I will do that. Thank you, Chairman.

Chairman

The committee stands adjourned until 9.30 a.m. next Thursday morning.

The joint committee adjourned at 11.30 a.m. until 9.30 a.m. on Thursday, 14 February 2013.