Dear Friends,

At our Alpha-1 Patient Patient Conference in Marino Institute of Education on October 7th concern was expressed about the effect testing family members for Alpha-1 would have on insurance and mortgage possibilities. 

Since then I have done some research into the matter and have been in contact with the Insurance Ombudsman, IFSRA (the regulatory body for the industry) and the Insurance Information Office. I have received some good and clarified information. Firstly: Under part 4, section 2 of the Disability Act 2005, it will be illegal to use (process) the results of genetic testing for Insurance, Life Assurance or Mortgage purposes. This also applies in the case of: Employment, Health Insurance and Occupational Pension. The full text of the new legislation can be found here

In other words, genetic discrimination will be illegal in Ireland from Dec. 31st 2005.

What will be considered when a person is looking for a pension, mortgage, etc. will be the usual criteria:

- Health history (symptoms etc.)

- Smoking status

- Usual questions pertaining to family history of heart disease etc.

It was emphasised that although the approach may vary from company to company, they are very competitive and are interested in individuals and as long as we tell it as it is there should be no great problems. Although genetic discrimination does not seem to have been generally applied there was always the fear that it would. Now that fear is removed and that is good news for us all. I plan to arrange an Insurance Information slot for our next patient conference.

I trust that this information will put minds at rest.

Yours sincerely,
Larry Warren, CEO Alpha One Foundation.

More information on this issue can be found on IrishHealth.com and a statement from Frank Fahey, TD, outlining the main terms of the legislation can be downloaded here.

 

Doctors are being urged to test all non-responsive severe asthmatics for Alpha-1, reports James Fitzgerald today in the Irish Times October 4th 2005. 

Patients who are not responding to conventional treatments for asthma or similar conditions should be tested for Alpha-1, a genetic disorder that often leads to severe lung or liver disease, according to the chief executive of the Alpha One Foundation.

Larry Warren says it is estimated that just one in 10 sufferers is successfully diagnosed and it is thought that around 1,200 people in Ireland have the disorder, roughly the same number of people with cystic fibrosis.

"What we want doctors to do is test all non-responsive asthmatics and COPD (chronic obstructive pulmonary disease) routinely for Alpha-1," says Warren.
"We'll send them the kit. All they have to do is send us the dried blood spots and we'll do the rest," he says.

All children who get an acute liver condition, such as jaundice, should also be tested for Alpha-1, according to Larry.

Alpha-1 antitrypsin deficiency is an inherited disorder which results in low levels or non-existence of a blood protein called AAT, which can lead to serious liver or lung disease. Although among adults it usually manifests in the lungs, Alpha-1 originates in the liver and can lead to liver failure at any time in life. It is the leading genetic cause of liver transplantation among children. Barring a transplant, it is an incurable disease although certain treatments, such as the introduction of an antitrypsin product, have been found to slow down its development.

"Catching it early can help as patients will learn how to manage it," says Warren.
"All teenagers with non-responsive asthma must be tested as a matter of urgency before they develop bad health habits, such as smoking, and so they can take precautions like wearing a mask while farming or when they're around animals," he says.

An estimated 200,000 people in Ireland carry a single deficient gene that causes Alpha-1 and may pass this gene on to their children.

"Every GP or responding consultant has to ask: is it asthma or is it Alpha-1? We don't want to frighten people but people need to know. Less than a tenth of people are successfully diagnosed and unless doctors are asking that question, we are looking for a needle in a haystack," says Warren.

Warren and Alpha One Foundation chairman Professor Gerry McElvaney have co-written a letter that is being circulated to all GPs notifying them of the foundation's national targeted detection programme and inviting them to participate. A one-day patient conference on Alpha-1 is taking place this Friday in the Marino Institute of Education in Dublin and will discuss issues such as transplant implications, patient support needs and recent developments on the search for therapies.

One of the 1,200 or so Alpha-1 sufferers in Ireland is Joe Clinton from north Co. Dublin. Joe (61) was diagnosed in 1990 after he presented at Beaumont hospital with a chronic cough.

"The doctor told me I would gradually develop a condition called genetic emphysema. I asked her if that was the same as smokers' disease and she said 'I'm afraid so'," says Joe. The irony for him, he says, is that his father was a heavy smoker with "a horrendous cough" and from an early age, he vowed never to smoke.

From a farming background, Joe's family was also involved in the poultry business on a seasonal basis. "The sheds were not purpose-built and were poorly ventilated. Consequently, I inhaled the very damaging turkey dust over a 20-year period," he says.

His health has been up and down over the past few years but he had to give up his farming work at the age of 48 and has gradually deteriorated from being an active worker and marathon runner to someone who struggles to walk around the block. On the advice of a homoeopathist last year, he gave up all dairy products and noticed a real improvement. But a recent trip to hospital resulted in him picking up a chest infection and he now spends at least 12 hours a day on oxygen.

"I cannot sleep, I find it hard to eat and I'm completely stressed out of my head. I was able to walk several hundred yards but now struggle to walk 20," he says.

That said, Joe knows the importance of having a positive outlook on life. A keen sportsman in his younger days, he says his "obsession" with cricket gives him an enjoyable outlet and he feels the benefits of being outside in the fresh air watching the games in his local club, The Hills, near Skerries, where his son, Joe junior, is captain of the first team.

"Life is still sweet and I continue to enjoy my many varied interests. I continue to get considerable support from my family and friends," he says.
"As with all illnesses, it is vital that I look outside of myself and not get drawn into the very destructive self pity syndrome. As a human being it is strange to say but I feel I am a better person with this illness than without it. But that's a hard one to call."

The Alpha-1 Patient Conference takes place on Friday in the Marino Institute of Education, Dublin.

 

Ladies and Gentlemen,

I am delighted to be with you this morning to officially open the Alpha One Suite here in Beaumont Hospital. I would like to thank the Chairman of the Alpha One Foundation, Professor Gerry McElvaney, and the Chief Executive of the Foundation, Mr Larry Warren, for their kind invitation and the opportunity to speak to you.

As you know Alpha-1 Antitrypsin (anti-trip-sin) Deficiency is one of the most common life threatening hereditary disorders in the world today and has been identified in virtually all populations. An estimated 200,000 people in Ireland carry a single deficient gene that causes Alpha-1. An estimated 1,000 people suffer from the condition but fewer than 100 of these are correctly diagnosed.

The most common expression of Alpha-1 is fatal lung disease, as the condition predisposes people to emphysema and lung deterioration. Cigarette smoke aggravates the problem, and the majority of patients who eventually present with Chronic Obstructive Pulmonary Obstruction and are diagnosed as having Alpha-1 have a history of cigarette smoking, which is estimated to shorten the life span by up to 20 years.

Early diagnosis of Alpha-1, leading to early cessation of smoking, significantly improves the quality of life and life expectancy for this group, and I understand from Professor McElvaney that, as a group, those who become aware of their condition are extremely compliant in relation to giving up smoking.

Clearly, early detection of the condition can make a huge difference for patients. Because of this, the World Health Organisation has endorsed a targeted detection programme for Alpha-1 deficiency, testing all individuals with chronic obstructive lung disease and I am delighted to say that Ireland is to the fore in this field with the commencement of the world´s second programme, the first having started the United States, with financial backing from my Department.

The method of diagnosis is simple, with Alpha-1 levels being measured from a blood sample. Over 21 hospitals are participating in this programme and it is envisaged that a total of 25,000 people will be tested over the next 5 years. Evaluation of these tests will be carried out at this new facility which is being opened today. My Department is pleased to be associated with such a pioneering venture.
 
The Alpha-1 Targeted Detection Programme is a major and important element of the National Lung Transplant Programme from which its funding is derived. The purpose of the Targeted Detection Programme is to detect, identify and treat as many people in Ireland as possible who suffer from Alpha-1, the most common expression of which is fatal lung disease. Identification and treatment of persons with this disorder will greatly reduce their need for hospitalization and will improve their life expectancy and lifestyle.

At this point I want to acknowledge the valuable work being done by Professor Gerry McElvaney and Larry Warren, and to thank them for their hard work and dedication in bringing the Programme to this stage and in increasing public awareness and professional understanding of the significance of the diagnosis and treatment of Alpha One.

The Alpha One Foundation was and is a strong supporter of the No Smoking Campaign. Smoking is one of the major causes of lung disease. We know that over 90% of all lung cancers are directly attributable to smoking. From a public health point of view there is no acceptable level of tobacco consumption and as Minister for Health and Children I make no apology for making the fight against smoking one of my top priorities.

The adverse impact of tobacco consumption on human health globally and locally is well documented. Tobacco smoke is the leading preventable cause of death and disability in Ireland. Medical evidence has repeatedly confirmed tobacco as a cause of cardiovascular disease, common cancers, chronic obstructive pulmonary disease, and asthmatic attacks. About 7,000 deaths in Ireland each year are attributable to tobacco-related illness. I have been encouraged by the response of the general public to the ban on smoking in the workplace. The high levels of compliance indicate that in Ireland we are no longer prepared to ignore the fact that tobacco kills.

In parallel with the policy initiatives being pursued in the smoking area, I have been conscious during my term of office of the need to invest in the development of treatment and other programmes for persons with lung disease. One of the most significant areas in this regard is the Government's commitment to the establishment of the National Lung Transplant Programme. Many of you will be aware that the Taoiseach formally opened the National Lung Transplant Unit at the Mater Hospital recently. That event represented the latest in a series of milestones on the road to the provision of an Irish-based Lung Transplant Programme. I know that a huge amount of work has been done by many people over the last few years in preparing for the launch of the Programme and I want to acknowledge the efforts of everyone involved in bringing the Programme to this stage. I would like to take this opportunity to wish the Programme every success.

Revenue funding of almost €8m has been provided to support the repatriation of the Lung Transplant Programme. As well as funding the operation of the Unit itself within the Mater Hospital, and the Alpha-1 National Targeted Detection Programme, it also supports the associated programme in St Vincent´s Hospital and the Cystic Fibrosis Registry. My Department has also conveyed sanction to the Eastern Regional Health Authority for a capital grant to proceed with proposals for the provision of an enhanced tissue typing facility here at Beaumont Hospital which will provide an essential tissue matching service for the Lung Transplant Programme in addition to the service already provided in respect of renal and pancreatic transplant.

In conclusion, I want to reiterate my thanks to the Alpha One Foundation for inviting me here today and I wish the Foundation every success with the National Targeted Detection Programme.

Thank you.

A copy of the Minster's speech can also be found on the Department of Health & Children website here.