Dáil debates

Thursday, 29 June 2006

Hepatitis C Compensation Tribunal (Amendment) Bill 2006: Second Stage.


12:00 pm

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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I move: "That the Bill be now read a Second Time."

The Government acknowledges in the strongest possible terms that the infection of people with contaminated blood products was catastrophic for them and their families. While no monetary support or compensation can repair the damage done, Ireland is doing more for victims compared with other countries in similar circumstances. I am delighted this is the case.

For many years, people infected with hepatitis C have made the reasonable case for a method of addressing the insurance difficulties which they and their spouses face. No particular solution to these difficulties was readily apparent. While it was relatively easy to find precedents for monetary compensation schemes, nowhere in the world was there a scheme to address the insurance difficulties of this nature. As far as I am aware this remains the position.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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It would be appreciated if we could have copies of the speech. This is a complex issue on which the Tánaiste and Minister for Health and Children made statements this morning which I believe are misleading. It is important that a written script is given to Members. I would be grateful if that could be attended to immediately.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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It is being attended to. The script should be arriving in the Chamber now.

Photo of Aengus Ó SnodaighAengus Ó Snodaigh (Dublin South Central, Sinn Fein)
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That is just glasses of water being brought into the Chamber. Sustenance must come first.

Photo of Jan O'SullivanJan O'Sullivan (Limerick East, Labour)
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It has been clarified that the script will be made available.

1:00 pm

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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The introduction in the Bill of an insurance support scheme on a statutory basis shows the continued commitment of the Government to working with the victims of infection to provide all possible supports to them. This scheme brings to three the key forms of recompense which the State has put in place for this cohort. There are already two forms of recompense in place for persons with hepatitis C and HIV.

The first is the compensation scheme, administered through the Hepatitis C and HIV Compensation Tribunal. To date the tribunal has incurred expenditure of more than €660 million and made awards to around 2,200 people. This figure includes most of the 1,700 persons infected with hepatitis C or HIV and a significant proportion of their spouses, partners or dependants. The second form of recompense is the provision of a range of health care services under the Health (Amendment) Act 1996. The cost of the health care scheme is approximately €15 million per annum.

After enactment of the Bill, and to ensure consistency and fairness, every person who receives a compensation award at the tribunal, under the existing or new legislation, will also receive the special health card. I will shortly be in contact with the Health Service Executive in this regard. There will be a third form of recompense in the form of an insurance scheme. This will cost an estimated €90 million over the lifetime of the scheme, estimated to be at least 30 or more years.

To ensure a consistent approach to all three supports, the Government agreed that a hepatitis C diagnosis should be defined by scientific test, the ELISA test, for chronic infection and certain defined symptoms of acute infection acquired within 16 weeks of the administration of the anti-D product. The symptoms linked with hepatitis C include fatigue, aches and pains, depression, dry skin, rashes and so on. Many of these symptoms are common to several viral and other conditions not associated with hepatitis C and form a significant part of the caseload of most general practitioners. To ensure the support schemes operate in a fair and equitable manner and that those determining eligibility under the schemes use clear consistent criteria, diagnosis will be determined by means of an internationally accepted test. A similar scientific test definition of hepatitis C diagnosis is used in other jurisdictions, such as the UK and Canada, where compensation schemes operate.

More importantly, the ELISA test is accepted internationally as the standard method for diagnosing hepatitis C for the purposes of health care services. In practice, the test is used as the first-line indicator that any hepatitis C sufferer has been exposed to the hepatitis C infection at some time in the past and should be further investigated for evidence of current infection. The expert group on hepatitis C, chaired by the chief medical officer of the Department and Health and Children and including representation from leading liver consultants and a member of Positive Action, agreed in 1998 that eligibility for the Health (Amendment) Act card should be on the basis of a positive diagnostic test for hepatitis C. The Health (Amendment) Act card is given to eligible persons by the HSE to facilitate them in accessing the range of health services to which they are entitled.

In 1995, support groups pressed for a statutory compensation tribunal. A Bill was drafted with the assistance of John Rogers SC and Ivor Fitzpatrick & Company Solicitors and submitted to the then Minister. The Bill included the ELISA test as the basis for a diagnosis of hepatitis C, as is now provided.

Since 1997, infected people's inability to obtain life assurance or mortgage protection cover has added further problems to the damage they have already suffered. This was one issue highlighted by the consultative council on hepatitis C from its first meeting in March 1997. The Department of Health and Children retained Mercer Human Resource Consulting Limited to examine the insurance difficulties facing persons with hepatitis C and to suggest ways in which these difficulties might be resolved. A second phase of the project led to the development of detailed proposals for an appropriate scheme. Following representations from the Irish Haemophilia Society it was agreed the small number of persons infected with HIV would also become eligible under the scheme. Departmental officials have worked in close co-operation with the representative groups — Positive Action, Transfusion Positive, the Irish Haemophilia Society and the Irish Kidney Association — to agree the scheme's parameters and have taken nearly all the groups' recommendations made on board in the scheme's development.

Persons to whom the scheme will apply come under two categories with regard to insurance matters, those who can get insurance but only with increased premiums and those who are deemed by the insurance industry to be uninsurable. The Bill's objective is to provide reasonable access to the insurance market for those for whom the cost of insurance to date has been rendered prohibitive or for whom cover is unavailable. The introduction of the scheme will provide for life assurance and mortgage protection cover. Under the scheme the State will pay the additional risk premium where the life assurer is willing to provide cover subject to an additional premium. The State will assume the risk on the life cover where the assurer is not willing to provide this cover. It will also allow as a matter for priority for the development of a travel insurance scheme. The scheme will be administered under the aegis of the HSE. Specific details on its administration will be set out in regulations and an administrator will be recruited as soon as possible after the Bill's enactment.

Section 1(a) adds definitions for the terms "relevant claimant" and "relevant insurance scheme". Section 1(b) amends the definition of diagnosis for the purposes of the existing compensation scheme and the new insurance scheme. It provides that a diagnosis must be based on a positive ELISA test, the internationally used scientific test to diagnose persons chronically infected with hepatitis C. The definition also clarifies the eligibility of persons who displayed symptoms of acute infection within 16 weeks after the administration of the anti-D product. These requirements will not apply to claims for compensation made to the tribunal before 20 June 2006.

In section 2, eligibility for compensation in respect of loss of consortium, is clarified as applying to persons who were married before the diagnosis of hepatitis C and HIV or who were living together for three or more years before the diagnosis. This provision will come into effect on the enactment of the Bill. Consortium can be defined as "the living together as husband and wife with all that flows from that relationship including companionship, the rendering of services, sexual intercourse and affectionate relationship between spouses". Persons who were directly infected with hepatitis C or HIV are compensated as part of their general damages for all the effects of the virus on their lives and relationships. Loss of consortium is intended to compensate the spouses and partners of infected persons who entered into marriage or long-term relationships without the spectre of hepatitis C or HIV hanging over them and then found their expectations of a normal family life were severely affected by their partner's condition.

A relationship which was formed in the knowledge of the hepatitis C or HIV diagnosis is excluded from this particular head of claim on the basis that, for a loss of consortium to exist, there must have been a committed relationship already in existence and the legitimate expectation that this would continue without the imposition of a viral illness acquired through the use of State-provided health services. However, it is important to note that eligible partners in relationships formed after diagnosis will remain entitled to all the other relevant heads of claim under the compensation scheme, such as compensation for any actual losses incurred in looking after their partner, loss of services, loss of society, post-traumatic stress disorder, mental distress and dependency losses.

Sections 3, 4 and 5 of the Bill contain the provisions establishing the insurance scheme. Section 3 amends section 7 of the Hepatitis C Compensation Tribunal Act 1997 to allow the Minister to make regulations providing for the establishment, operation, administration and supervision of an insurance scheme. The insurance scheme will provide certain types of insurance to claimants who fall into the following categories: hepatitis C-infected anti-D recipients, hepatitis C-infected transfusion recipients, HIV-infected recipients of relevant products, the children or spouses of eligible persons with hepatitis C or HIV, who have themselves been diagnosed positive for the virus, a parent, brother or sister of an infected person who is himself or herself diagnosed with hepatitis C or HIV infection, and certain other claimants, and who are refused the relevant insurance on the grounds that they have been diagnosed positive for hepatitis C or HIV, or who the administrator reasonably believes would be refused if they applied for insurance, who are refused unless they pay a higher premium than persons of similar age and gender who have not been diagnosed positive for hepatitis C or HIV.

Under this section, the Minister may also make regulations to specify the administrator of the scheme and the functions of the administrator, and specify the conditions subject to which a benefit will be provided under the scheme, specify the conditions subject to which benefits will not be provided, or stop being provided, based on the time when the claimant makes an application to the administrator for benefit, and the claimant's age at the time of making the application.

The scheme will provide life insurance of €400,000, or seven times the annual earned income, up to a maximum of €500,000, of the claimant, or the claimant's spouse or the claimant's partner of three years standing at the time the application is made, or the joint income of the claimant and spouse or partner. All the amounts mentioned above will be index-linked to the consumer price index compiled by the Central Statistics Office, or its successor.

The scheme will provide mortgage protection insurance for the purchase, change or improvement of the claimant's home, primary residence, to a maximum of either €375,000, index-linked to the Permanent TSB-ESRI Dublin house price index, or its successor, or the average Dublin house price, determined by the Permanent TSB-ESRI Dublin house price index, plus 25%, whichever is greater. For the first year after the scheme comes into effect, eligible claimants will be allowed to remortgage any property he or she owns up to a total of €100,000.

Under section 3, the Minister is empowered to make regulations to provide for annual travel insurance. I am committed to establishing a travel insurance scheme as soon as possible and I intend that travel insurance benefits will be covered by the scheme within six months of the establishment of the life and mortgage protection elements of the scheme.

Claimants who want to avail of the full benefits of the scheme without restriction must make an application to the administrator within a year of the scheme coming into effect, or within three years of the date on which the claimant has been diagnosed positive for hepatitis C or HIV, whichever is later.

The exceptions are applications for annual travel insurance and applications for life and mortgage cover by claimants who are under 30. In respect of the travel insurance element of the scheme, once this is up and running a claimant can apply for full benefits under the scheme at any time.

In regard to young claimants, the Irish Haemophilia Society made a compelling case that persons with haemophilia who were infected with hepatitis C in their early years of life may still not have reached the stage in life where they are ready to take out a mortgage or life assurance policy. Accordingly, the Government agreed that the full benefits of the scheme would apply without restriction to eligible claimants up to the age of 30, rather than be confined to the first year of the scheme. Except for this group, claimants who make an application after the first year that the scheme is in operation and who would be deemed "uninsurable" will still be able to avail of insurance but the benefits will have a phasing-in period. In the case of claimants who are under 50 it is intended by regulation to specify a two-year phasing-in period, and for persons over 50 the relevant period will be three years.

For the first year of the scheme, applications will be accepted by persons who are 75 years of age or younger, but after the first year, applications will only be accepted from persons who are 65 or under. No applications will be accepted from claimants who are over 75, even during the first year of the scheme, and cover will cease for every claimant who reaches 75.

The Bill provides that the Minister may make regulations setting out the basis for calculating the insurance premiums, if any, to be paid by a claimant, but it is proposed to amend the Bill on Committee Stage to remove this provision.

An important element of the insurance scheme is that eligible claimants with other medical conditions as well as hepatitis C or HIV will have all these conditions disregarded for the purposes of the insurance scheme. Under the scheme, the claimant will be entitled to benefits by payment of a premium that will be generally the same as the premium paid by a person of similar age and gender who is not infected with hepatitis C or HIV.

Where an eligible person makes a joint application with a person who is not covered by the scheme and the application benefits both parties jointly, the other person will pay the same premium in respect of his or her benefit as any other person of similar age, gender and health status and he or she will not pay a higher joint premium in respect of the joint benefit than the joint premium that would be charged for a joint application from two persons, neither of whom had been diagnosed positive for hepatitis C or HIV.

The administrator may determine the procedures to be adopted in the operation, administration and supervision of the scheme, subject to the provisions of the Act and any regulations made under the Act. The scheme administrator may refuse an application if it is not presented in the specified format or if information which is deemed to be reasonably required is not provided.

If an eligible person, or the eligible person and his or her partner, has two or more policies under the scheme, the maximum sum assured applies to the policies collectively. If a person has an existing policy or takes out new policies, which are not taken out under the scheme, those policies will not be taken into account in calculating the maximum sum assured.

With regard to the administration of the scheme, the administrator will be obliged to submit a report and accounts to the Minister as directed. The Minister will lay the report before the Houses of the Oireachtas, and the report will not identify any claimant. Wherever the term "relevant date" is used in regard to the insurance scheme, it means the date on which the scheme commenced.

I now turn to section 4, which outlines the appeals procedures that will apply. Under section 4, a person may appeal a relevant decision of the scheme administrator within 28 days of being notified of the decision in writing. An appeal will be in the format decided by the administrator and will state the reasons for the appeal. The Minister will appoint one or more people who are solicitors or barristers of at least five years standing to consider appeals.

The appeals officer will be independent but will comply with any guidelines on procedure issued by the Minister. He or she will consider any oral or written submissions made by the appellant and the scheme administrator, make a decision in writing, giving reasons, and send the written decision to the appellant and the administrator. The appeals officer may also pay reasonable costs in respect of an appeal which has been upheld.

A person affected by a decision of the appeals officer may appeal to the High Court on a point of law within 28 days of receipt of the written decision. A decision of the High Court will specify where appropriate the period within which the decision must be carried out. The High Court's decision will be final. If the appeals officer's decision is not appealed to the High Court, the administrator will carry out the decision as soon as is practicable. Where the High Court has given a decision the administrator will carry out that decision within the specified time period or as soon as possible thereafter.

An appeals officer will be paid a salary and expenses and will be provided with whatever permanent or temporary staff the Minister deems necessary, and with the consent of the Minister for Finance, to carry out his or her functions, including medical or other experts. He or she may resign by giving notice in writing. The Minister can revoke the appointment for stated reasons. Each appeals officer will report to the Minister in writing at intervals to be decided by the Minister. The Minister will lay copies of the report before the Oireachtas. The appeals officer's report will not identify any claimant.

The following decisions of the administrator can be appealed: a refusal to consider an application, a decision that a claimant is not eligible, that a benefit cannot be provided or must cease to be provided, or is partially or incrementally provided, or the amount of the sum assured under the scheme. Section 4 also provides for the establishment of a special account to pay costs arising from the scheme, including the cost of administration and payment of benefits. This account can only be used to pay costs associated with the insurance scheme, and only on the direction of the Minister for Finance. Any money in the special account, or interest on the money, can be paid into, or disposed of, for the benefit of the Exchequer at the direction of the Minister for Finance. The special account will be with the Paymaster General, will be subject to whatever terms and conditions the Minister for Finance, in consultation with the Minister for Health and Children, decides, and will be subject to audit by the Comptroller and Auditor General.

The scheme administrator may specify any forms which he thinks fit and the documents which are required to be submitted with the forms. These forms must be completed in full by an applicant and accompanied by the necessary documents. The scheme administrator may require a statutory declaration to be made that the particulars contained in the forms are true. Multiple copies of forms or documents may be required, or alterative documents in particular circumstances.

Confidentiality is a prime consideration to persons infected with hepatitis C and HIV through the administration of blood and blood products within the State and I take their concerns on this matter seriously. As a result, section 4 of the Bill stipulates that everyone connected with the process, including the administrator, the appeals officer or officers and the insurers must maintain confidentiality in respect of all relevant matters and will not allow unauthorised access to any relevant documents. A person who contravenes this provision and is convicted of a summary offence will be liable to a fine of up to €3,000 or up to six months' imprisonment or both. A person found guilty of an indictable offence will be liable to a maximum fine of €25,000 or two years' imprisonment or both.

Section 5 is a technical amendment to distinguish between the special account already set up to pay the costs of the compensation scheme and the separate account to be established to pay for the insurance scheme. This is the final provision relating to the insurance scheme.

I will now continue with section 6. I have already referred to section 1(b) which clarifies the definition of hepatitis C for the purposes of entitlement to compensation. Section 6 mirrors this provision by inserting a similar requirement into the Health (Amendment) Act 1996 which entitles eligible persons with hepatitis C to a range of health care services without charge.

The seventh and final section gives the Short Title of the Bill and the amended name of the three compensation schemes. In addition, the Health Acts 1947 to 2006 will include section 4 of this Bill.

The establishment date for the insurance scheme will be set by regulation, and I intend to enact the necessary regulations as soon as possible after the enactment of the Bill. Sections 1 and 6 will take effect from 20 June 2006, while section 2 will take effect from the date of enactment.

I acknowledge the input of the four hepatitis C and HIV support groups, the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive, into the negotiations which preceded this Bill and thank them for their co-operation. My officials have discussed the Bill in great detail with the four groups in recent days. While there is a significant difference of opinion on sections 1, 2 and 6, there is almost unanimity on the sections establishing the insurance scheme.

A small number of amendments to the insurance elements of the Bill have been suggested by the support groups and have been actively examined by my officials. I hope to take these amendments into account on Committee Stage. I am confident at the end of this process there will be a statutory framework in place for a viable insurance scheme which at long last will enable the 1,700 persons with hepatitis C or HIV to avail of insurance products in a fair and equitable manner.

My officials have agreed with the support groups that they will engage immediately with them to agree the text of the regulations for the scheme once the Bill is enacted. A large amount of groundwork has been done on this, and the outline rules on how the scheme will operate have already been drafted and agreed. I have instructed my officials that the completion of this process and the appointment of an administrator for the scheme should be given priority and completed within a three to six-month timeframe. I also acknowledge the importance which the support groups attach to the travel insurance element of the scheme and it is my intention that discussions on the parameters of this scheme will proceed as soon as possible.

I commend the Bill to the House and I urge its support in ensuring that this substantial initiative for persons infected by the State is established on a statutory footing, so that the necessary arrangements can be made to make the scheme available to those who need mortgage, travel insurance and life assurance as quickly as possible.

Photo of Liam TwomeyLiam Twomey (Wexford, Fine Gael)
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I am sharing time with Deputy Enright.

Photo of Jan O'SullivanJan O'Sullivan (Limerick East, Labour)
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Is that agreed? Agreed.

Photo of Liam TwomeyLiam Twomey (Wexford, Fine Gael)
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Much of what will be said by Members of this House today and tomorrow will be on behalf of members of the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive because the Tánaiste and Minister for Health and Children did not negotiate fully with those organisations before this legislation was brought through. In some respects we represent their views and those of people affected or who may be affected by State health services.

The Tánaiste and Minister for Health and Children's statement to the press yesterday mentioned that she is anxious to have this Bill enacted so that the many people deprived access to the insurance market can now avail of it. If she had stuck to the issue of insurance products, this legislation would have received the full support of this House and would be passed quickly today without the animosity we have witnessed.

Patients were infected with HIV and hepatitis C by the State's health service and the Tánaiste and her Government should not lose sight of that pertinent fact. We are obliged to do our absolute best for these people because of it. Groups representing the victims of this public health disaster were quietly confident that, after months of negotiations with the Tánaiste and Minister for Health and Children and her Department, this Bill would finally help them come closer to closure on their dealings with the State on this terrible disaster. I acknowledge that these dealings were often more confrontational than they should have been in the spirit of correcting the wrongs done to this group of people by the State that we serve.

This has been a medical, social and psychological disaster in the lives of those men, women and children involved — citizens of this country. We can all remember the raw emotion in the mid-1990s when this public health disaster first came to light and it continues to have a terrible effect on people's lives to this day. The way this legislation has been put through the House by the Tánaiste and the Government is wrong. In the past ten years the State has responded to this issue with two Acts, the Hepatitis C Compensation Tribunal Act 1997 and the Hepatitis C Compensation Tribunal (Amendment) Act 2002. They looked at two of the three strands referred to by the Tánaiste and Minister for Health and Children, namely, giving compensation to people affected and providing health care to them. The third strand was the provision of insurance. After months of discussion, those affected believed this Bill would build on protections achieved so far. We should acknowledge that those achievements were initially difficult to gain, but as time passed we recognised what needed to be done.

Having spoken to the people affected by this, it is amazing how they were treated all those years ago, not only politically but also by the medical profession. Assumptions were made as to how they might have contracted this awful illness. Assumptions were made regarding their private lives which, undoubtedly, had an effect at the time. We need to be much more humane in the approach we take to the issue. Let us not revert to those days. Let us be more proactive and try to help these people. It is important that we deal with this as an insurance issue. The way the Tánaiste and Minister for Health and Children has dealt with this issue so far has been a slap in the face for victims. In some respects, the Government has been deceitful in the way this legislation has been advanced so far. It was only supposed to relate to the issue of insurance and the Tánaiste and Minister for Health and Children's changes have been brought forward in a deceitful way.

All the organisations that represent the victims of this terrible tragedy are unanimous in their objections to sections 1, 2 and 6. I do not like the way the Tánaiste and the Government launched a pre-emptive strike against the victims. The Government's press release states: "the Expert Group on Hepatitis C which is chaired by the Department's Chief Medical Officer and includes representation from leading liver consultants and a member of Positive Action, agreed in 1998 that eligibility for the Health Amendment Act Card should be on the basis of a positive diagnostic test for Hepatitis C". That statement is an attempt to downgrade the victim's argument by saying they agreed with the Department on the ELISA test for Hepatitis C. The Government should have been far more honest in its negotiations with this group of victims.

The way the issue of compensation is dealt with in the press release is sinister. Reference is made to "... compensation, through the Hepatitis C and HIV Compensation Tribunal, which to date has awarded over €660 million to around 2,000 people". The assumption that any reader of that statement would make is that €660 million has been given to 2,000 patients who have been infected by hepatitis C or HIV. The sum of €660 million covers everything, including legal, administrative and organisational costs, as well as compensation to the victims. The Government should have made that very clear instead of trying to give the impression that this group of people have already been well compensated by the State and that what the Government is doing today is redressing an imbalance on behalf of the State. That is an extremely negative approach and the Government should not attempt to do anything similar in future, especially in the context of dealing with victims of a terrible tragedy. The Tánaiste and Minister for Health and Children needs to clarify that point immediately.

The victims and their representative organisations have behaved admirably with the Tánaiste and Minister for Health and Children and all Governments over the past nine years. They have entered the negotiation process to try to build on their entitlements, the compensation fund for people who may come after them, the health care services they, and others who cannot speak for themselves, will need and insurance provisions. They have been extremely good in the way they have dealt with the Department of Health and Children and the Government. They have been involved in the negotiations on this legislation for 18 months. They attended numerous meetings and had countless discussions. They set targets that are referred to throughout the Bill and with which no one in this House will disagree. The Tánaiste and Minister for Health and Children will have no problems in that regard because the negotiations were two-way.

However, when the victims read the Green Paper they were shocked and horrified by sections 1, 2 and 6. That is why they approached the Opposition and asked us to request that those sections be withdrawn. They were not negotiated on with anybody and were purely unilateral, coming from the Government side. Those sections represent a Government decision to restrict some of the entitlements of these patients.

Withdrawal of entitlements is heavily dependent on medical evidence. Two laboratory tests will decide whether the State will look after infected patients or deny them service. The Government is setting enormous store by the ELISA test, arguing that it is extremely accurate and has improved greatly in recent years. The ELISA test, an Enzyme Linked Immuno Sorbent Assay, is a test for antibodies and not for the virus itself. Is this the only test proposed or are there other immunoelectrophoresic procedures being planned also? Is it intended to use other assay type tests that work like the ELISA test? Has the Government any plans to measure the viral antigen? Has any advice been given to the Tánaiste and Minister for Health and Children on this issue? There is no mention of alternatives in the legislation. The Bill clearly refers to one test, which is a test for the antibodies to hepatitis C, upon which a claim will fall if the result is negative. There is no indication as to whether it is intended to measure viral load or viral antigens.

I ask the Tánaiste and Minister for Health and Children to verify that the ELISA test is the only one that the Government will rely upon. I further ask how many ELISA tests will be allowed. Is one positive test at some stage in one's life sufficient? If patients get a negative result at some stage, will things get a little tricky in terms of their entitlements? The situation is not clear but the Government has put enormous store by a single test.

One thing I have learned from my 20 years in medicine is that it is not an exact science, although we might like to think it is. Medical discourse concerning laboratory tests is littered with terms such as "false positive", "false negative" and so forth. The Tánaiste and Minister for Health and Children knows this. In that context, people can be denied services and justice on the basis of blood tests that may not be 100% accurate. Many factors can affect the results of a blood test, including chemotherapy treatment or transplants. This fact is not covered anywhere in the legislation. The Government is giving all the credit to one test and one wonders if one had a discussion with medical experts whether they would agree that this is the right approach to take. In the interests of fairness, the Tánaiste and Minister for Health and Children should release the expert advice she received, when drawing up this legislation, to show that this test is so accurate that justice can be denied to people on the basis of it. What has gone wrong in the past nine years that the Government is now taking this approach?

The Government is also relying on another test, the approach to which is even more ridiculous than to the ELISA test. The Alanine Aminotransferase Test looks at raised ALT levels in the presence of jaundice, no later than 16 weeks after the person has received anti-D. This may seem reasonable in a medical sense, but is not so in a real-world sense. Anti-D is given to women after delivery. Will the Department recall those women at 16 weeks and check their ALT levels, in the presence or absence of jaundice? Medical advisers will point out that it is quite possible, after 16 weeks, that there would be no visible signs of jaundice in patients that would lead them to seek medical attention. Statistics indicate that fewer than 20% of patients might have jaundice when they have this acute infection. Therefore, reference to raised ALT levels is meaningless because the only way a patient will know if his or her ALT levels are raised is in the presence of jaundice. Many patients with a 16 week old child would not be surprised to find they are tired, lethargic and sleeping a lot. The Government is relying on one thing, namely, jaundice. It is saying to patients that they must have jaundice after 16 weeks or they are out of the loop. The Government cannot do that to patients.

If the Government is saying that anti-D is still a problem, however small, everybody who receives it should be tested, 16 weeks later, for raised ALT levels. Perhaps people should also be tested after six months and again after 12 months, to be absolutely certain the Government is not denying people their rights or missing something. There are two ways to approach this. The Government is asserting in the legislation that if a person is one of the fortunate four out of five patients who does not contract jaundice, he or she is out of the loop. At the same time, if a person contracts jaundice, he or she should seek medical attention immediately or will receive nothing from the State. That is what the commencement order in the Bill means.

The issue of transfusions is also important. People who receive blood transfusions often get jaundice because red blood cells may break down in their bodies for many reasons. One can see this when one conducts routine blood tests on transfusion patients. Often people who receive transfusions have other illnesses which cause them to be anaemic. Some blood tests may indicate raised ALT levels but doctors might not always consider the possibility of hepatitis infection and carry out further tests for hepatitis C.

Again, the Government is denying those patients the opportunity to secure the compensation that the State must pay people if its health services have been negligent. The compensation, medical care and insurance schemes that we are giving them are only to be expected. There is nothing great in this, and we must be far more open and easy with people regarding those issues.

Recently we had a hepatitis B scare in two hospitals in the south east. When the laboratory there was looking through the different types of hepatitis B that it had, it noticed that there was a cluster in two hospitals. It started a massive campaign, which is still under way, to test another 1,000 patients who were in the hospital at the same time to see if there are other cases of hepatitis in that population.

From my medical experience and discussions with doctors in both hospitals, I cannot see how those patients might have contracted hepatitis from each other. They did not have a surgical or investigative procedure carried out, which are the most obvious possible sources of infection in hospitals. Public health investigators could not find any connection between the individuals at a community level. A large-scale public health exercise is being carried out to take blood from 1,000 patients who may only have been in the same ward as the others and had no physical or verbal contact with them. However, the testing is happening because we do not know how the hepatitis cluster arose.

The Minister for Health and Children has introduced legislation and is incredibly positive regarding health outcomes. If it is black and white as far as she is concerned and she can deny a service to future patients on that basis, she should present her evidence to the Select Committee on Health and Children on Committee Stage and state why she came down so strongly in this regard. I am focusing a great deal on medical issues, but I am sure other Members will raise alternative points regarding the legislation. These are important, since the Minister for Health and Children is basing so much on them. She must come back and inform us what is going on.

I would also like to know what concerns were raised within the Department that criteria used for nine years were unacceptable. What has changed that has resulted in such concerns being raised? This morning we heard that, if there are patients of whom we are unaware, their number is approximately 100. I do not know why the Minister for Health and Children is making such major changes to legislation. Whom is she attempting to block out? Has the Department identified a cohort of people abusing this? Why is it marking people in this manner? If something has worked so well for nine years, why are we taking this route? Nothing in the Minister for Health and Children's press statement yesterday or any other statement that she has made thus far gives any indication of why she is taking this course of action.

If anything, this debacle was handled extremely well after enactment of the initial legislation. People have become more aware of what went wrong, and we have seen great changes to the Irish Blood Transfusion Service. Everyone has invested a great deal of time and effort in this, and I would like the Minister for Health and Children to tell us what she feels is so wrong that she must introduce what in some respects is extremely restrictive legislation, allowing no element of doubt regarding those who might be affected. Everything is black and white for the Minister, and I would like to know where she is coming from in this regard. She spoke of having received expert medical advice, and that is vital to every Member when she is coming down so hard on people regarding the shape the legislation is taking.

Why did she spring this legislation on organisations that have co-operated so fully with the Department of Health and Children in recent years? They have put their anger to one side and done their utmost to secure the best compensation, medical care and now insurance protection. That protection is for themselves and their families. I am surprised that it has taken so long and that they have been so patient when awaiting this legislation.

There is no doubt that there have been adverse events for some of the victims, who were first diagnosed as far back as 1995 or 1997. In the meantime, they might well have benefitted if the third strand of this legislation had been delivered within the last nine years of the current Government. It was an unbelievably topical issue and very emotional for everyone involved rather than simply for the victims, who were directly and adversely affected. Many people shared their pain regarding what happened at that time. I am surprised it has taken so long for us to reach this point.

Regarding the consortium, the Minister tried to throw this in. Someone once said of her party colleague, the Minister for Justice, Equality and Law Reform, Deputy McDowell, that he likes to build up straw men so that he can pull them down, throwing irrelevant things into an argument and then trying to argue against what he has essentially created himself.

The Minister for Health and Children mentioned the issue regarding second and third partners as the reason for bringing forward the more restrictive legislation on section 2. Minors affected by hepatitis C and HIV, who are now reaching an age when they will form stable relationships, may already have become part of the system, but they may not be able, old or mature enough or have such a relationship.

If they have a first relationship after that date, the Minister will now deny any compensation to their partners. They were infected as minors but will suffer from hepatitis C and any other ailments later in life. They will also suffer emotionally and psychologically, since they will not be able to form the same sorts of physical relationships that all of us in this House are lucky enough to enjoy. This legislation, and especially the fact the Minister is attaching a limit, will restrict those people. This morning she threw in a red herring, and she should revise that part of the legislation.

Those are the big issues. In my speech today, I have focused on sections 1, 2 and 6. I have not raised insurance since, as I pointed out, the organisations involved negotiated a deal in a cool and collected manner and a spirit of partnership. That spirit and trust has now been broken by the Minister, and she and especially the Government must attempt to rebuild it rather than taking us back to the bad old days. This is her opportunity to do so. I am delighted Deputy McManus has put forward an opportunity for her and the 16 apostles on the Government backbenches who will now dictate Fianna Fáil policy to bare their teeth and stop this nonsense from going any further.

Photo of Olwyn EnrightOlwyn Enright (Laois-Offaly, Fine Gael)
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In recent months, various Deputies have asked in the House when this legislation would be introduced. At that time, we all anticipated we would be able to welcome it. Unfortunately, we now find ourselves unable to do so. While there are worthwhile elements, the changes introduced are so fundamental that they cause serious difficulties for us regarding the Bill as a whole.

This issue has run for over nine years, and people have waited for a long time to achieve finality. I know negotiations on this element have been ongoing for the last 18 months. However, if we are to try to put this in place, we should at the very least ensure that now, after nine years, we do it properly in a manner that addresses the real needs of those infected hitherto. It seems strange that, after negotiations, these changes should be introduced. My understanding of negotiation is that the parties concerned, in this case, the four parties representing those who were infected, would come together and meet the Minister to discuss what would be included in the Bill. It appears clear from the statement released by the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive that these groups were unaware of the changes the Minister was about to bring forward until 20 June 2006. This does not constitute genuine negotiation because these groups did not get the opportunity to discuss these changes.

In her speech, the Minister acknowledged that a significant difference of opinion exists but these groups did not get the opportunity to address this difference of opinion. Deputy Twomey dealt with the medical aspects of the case in a way I would be unable to do. I support his call for the Minister to publish all the advice she has received, particularly that relating to the ELISA test. Deputy Twomey pointed out that there appear to be no safeguards and no checks and balances in the system to ensure this is accurate. Regardless of whether safeguards exist in respect in of the test, it must be asked whether those infected have endured enough at this point. It is wrong to require all new applicants to undergo these stringent tests when up to now, the word of a specialist in hepatitis C was sufficient.

In her speech, the Minister accepted that the State has an enormous responsibility in this area. It has complete responsibility. In light of this, it is all the more important that we pass legislation that fully addresses the needs of all those who suffered at the hands of the State, which is what effectively took place. The changes introduced by the Minister do not fully address the needs of these people.

Could the Minister in her closing remarks explain why it is necessary to wait until the life insurance and mortgage protection elements of this are completed before the travel insurance elements are dealt with? Can they not run in tandem the way the mortgage protection and life insurance elements do?

Under the scheme, the question of mortgage protection and life insurance for an infected person will be related to those of a person of the same age who is not infected. The term used in the legislation is "general person". Many infected people have been unable to obtain mortgage protection or life insurance up to now so to compare them to people of the same age who are not infected is unfair. It would be better to effectively bring it back because the longer a person has mortgage protection or life insurance, the cheaper and more beneficial it is but infected people have not been able to avail of this to date. We are not comparing like with like because of the way mortgage protection and life insurance policies work.

I also echo the point made by Deputy Twomey about certain people who have been infected with hepatitis C but whose tests have proved negative so far. These people have very genuine and legitimate concerns as to whether they will lose out under the proposals introduced by the Minister.

In recent years, public confidence in the Irish Blood Transfusion Service has improved, an important development which we all welcome. However, issues remain in terms of the adequacy of blood supply and shortages that have been experienced at different periods of time, particularly during the summer. If we are to instill full public confidence in the Irish Blood Transfusion Service, it is important that the overall issues we are raising today, particularly those relating to sections 1, 2 and 6, are dealt with. While the service is receiving the media coverage it needs to sort out its problems, the affair still raises queries and concerns in people's minds about the service as a whole, which is a pity. The inclusion of these points causes difficulties.

I am sorry that I do not have the opportunity to speak further on this Bill but Deputy Twomey outlined Fine Gael's position very clearly. I ask the Minister to give serious consideration to the points we have raised; re-examine sections 1, 2 and 6; conduct genuine negotiations with the relevant groups; and give us the advice she has received.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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I move amendment No. 1:

To delete all words after "That" and substitute the following:

"Having regard to the fact that the Bill contains matters unrelated to the issues that were the subject of extensive discussions with interest groups representing affected persons and the additional matter adversely affects the interests of those persons and having regard also to the failure of the Minister for Health and Children to publish an explanatory memorandum outlining her reasons for including the additional matter, Dáil Éireann declines to give a second reading to the Bill.".

I will explain why the Labour Party is tabling this amendment. This Bill is a betrayal of a small blighted minority of men and women who suffer sickness and stigma as a direct result of negligence by the State. Instead of providing protection, the State, in the case of the contaminated blood scandal, poisoned vulnerable people. In some cases, the effects were so terrible that people died. Other people have had to deal with serious ill health. When this scandal was exposed, the Irish people rightly demanded a compassionate and honourable response by the State to the heartbreaking plight of innocent people so cruelly afflicted. All the Labour Party is asking is for today is for the same approach to be maintained in this legislation.

In their long struggle for justice, the survivors achieved certain rights and entitlements. These are statutory rights and entitlements that were enshrined in law in the hepatitis C compensation scheme because the then Minister for Health, Deputy Michael Noonan, did the right thing by these people. He endured vicious attack at times, particularly from Fianna Fail, in connection with his record. In light of that record, the treachery of Fianna Fáil and the Progressive Democrats in steamrolling through a Bill which dismantles some of those entitlements which were so hard and painfully fought for is striking. It is striking to witness how hypocritical and mean-spirited this Government attack on those who have suffered already and who are about to be marginalised and disempowered in this Bill is. We all understand that this is a Government which has lost touch with the people, but it is a new experience to realise that it has also lost touch with basic humanity.

In addition to being treacherous, this Bill is also dishonest. It was always meant to be a stand-alone Bill to provide a scheme of insurance cover for people who could not access insurance. The Bill was intended to provide for nothing else. It was a simple provision but it took a long time to evolve. We support that original provision. A person would want to be out of his or her mind to object to it. It is an important piece of the jigsaw which is long overdue. Insurance has been a long-standing problem for these unfortunate people, some of whom have died without it because there was no legislative framework to ensure they could access it. Others suffered losses connected to, for example, the cost of holidays, because insurance was denied them.

However, we should be clear that this Bill does not deal solely with insurance. It should be solely concerned with insurance but it is not. As far back as June 1994, Positive Action raised the issue of insurance with the Department of Health. Since then, the four organisations representing the people affected — the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive — have been engaged in protracted negotiations.

In December 2004, the Tánaiste gave a guarantee that the insurance proposal would be presented to the Government in early January of this year. What followed was extensive correspondence from the organisations in their attempt to get the Government to live up to its commitments. The process was so slow and painful, it resembled tooth extraction, but these organisations were present to assist that process at all times.

Let us remember the commitment required. On the one hand, there is a Government with the resources of the Parliamentary Counsel, Ministers, Ministers of State, civil servants and expert groups and, on the other, there are small organisations that are to a great extent dependent on pro bono efforts and whatever resources they can acquire. That the organisations commissioned legislation, which I have with me, displays how committed they are to ensuring that this issue is resolved. To this day, they make the point that they are willing to sit down with departmental officials to resolve issues that have arisen. The generous and proactive approach they have adopted is in stark contrast to the defensiveness and lack of information and accountability marking the approach of the Tánaiste and her Department.

These people were treated disgracefully. On 20 June 2006, the organisations were given a copy of the Bill for the first time. Following their perusal, they issued a statement as follows:

The Tánaiste and Minister for Health and Children published the above Bill on 20 June 2006. The Department of Health had been in negotiations with the above groups to provide a scheme to provide insurance for persons affected with Hepatitis C and HIV so that they could obtain insurance on the same basis as healthy persons.

Regrettably, the Tánaiste proposes in the Bill which is to come before the Dáil on Thursday, to make fundamental amendments to the Hepatitis C Compensation Act 1997 which will significantly limit the categories of persons entitled to make claims for compensation and for provision under the health code. Our groups were not informed until 20 June of these radical proposals which are unacceptable and should be opposed.

The organisations wholeheartedly engaged in a lengthy, drawn out process in the interests of their members and the people they represent. I can only imagine the disappointment they felt when they read the Bill because it was supposed to be a cause of triumph and celebration. The Tánaiste should be getting plaudits for what she did, as that would have been the context in which any right-minded person would have expected the Bill to be published. When the Tánaiste announced she was publishing the Bill, she did not mention these fundamental amendments which are opposed by the organisations representing those severely affected. It was to the astonishment of those groups that the legislation was not an insurance Bill. It was about——

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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On a point of order, I mentioned the ELISA test in my press statement. The Deputy is not correct.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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The Tánaiste did not mention there would be amendments that would affect people in ways that are now clear.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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The amendments do not affect anyone in the process.

2:00 pm

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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If the Bill is passed, young people will be excluded in terms of the loss of consortium, which I will address shortly. The Bill was about an insurance scheme, but it is also about more than just insurance. It is telling that so far removed from the original intent is it, the Title does not mention the word "insurance". The Bill is the Hepatitis C Compensation Tribunal (Amendment) Bill 2006.

I have just received a copy of the Government's amendments, which will change the Title. I do not know if such is common practice, but I have never witnessed it previously. The first amendment, with which we will deal tomorrow, displays the Government's opinion, namely, that the Bill is supposed to be about insurance, but it forgot to include the word "insurance" in the Title. The amendment to the Long Title in page 3, line 8 is to insert a provision for the establishment of an insurance scheme to enable certain persons diagnosed positive for hepatitis C or HIV to be provided with certain classes of insurance that would otherwise be unavailable to them or available only upon the payment of higher premia.

This amendment reveals more than anything else that there is an agenda. I do not know whether it comes from the Attorney General's office or elsewhere. Frankly, that is immaterial. The agenda is meant to contain, control, restrict and limit. Those limits and restrictions are being placed on people who have suffered and continued to suffer, but I do not know what the purpose of doing such is. If we were discussing large numbers of people, we could refer to political priorities and whether money could be allocated. We all understand that a certain rationing must take place in terms of resourcing, especially in the health service, but we are not discussing large numbers. Rather, we are discussing a tiny number within a tiny portion of the population.

At the most, passing the Bill would provide only a small gain to the Exchequer. In no way could that gain be commensurate with the pain endured by people or their anxiety now that we are considering a Bill made in bad faith. Promises have not been honoured because a sneaky set of amendments were inserted at the last minute by some sharp lawyer. Those amendments have altered the nature of the Bill.

I have the highest regard for the Tánaiste and do not wish to attack her unduly. However, that she could argue in the House that this Bill is about insurance while ignoring that it is about much more than that is not to her credit. We must remember that this Bill is about denying sick people their rights to compensation, including for loss of consortium, and their rights to medical cards.

From her comments on the Order of Business, it is shocking that the Tánaiste was not aware of the provisions in her own Bill and how penal they would be to certain categories of hepatitis C and HIV sufferers. Her negligence is due to her ignorance, but this in no way absolves her from responsibility. She appears to be ignorant of the fact that not only is the Bill dishonest, in terms of consortium it specifically discriminates against minors who are infected. Children who were infected, passed the ELISA test and may have gone through the tribunal process are entitled to compensation for loss of consortium for their future spouses, but this Bill will strip them of that entitlement. After the harrowing history, they are losing rather than gaining ground and are being told to move back. That is not acceptable.

Before preparing for this debate, I was not aware what consortium meant. The Tánaiste helpfully defined it as "the living together as husband and wife with all that flows from that relationship including companionship, the rendering of services, sexual intercourse and affectionate relationship between spouses". What is life all about if not that? This issue relates not only to individuals' health but also to the effects of their loss of health on those who love them. The ability to claim for the loss of consortium is a statutory right. If everything were right with this story, nobody would ever be able to claim that right because there would not have been any loss.

This is a story about the terrible loss suffered by individuals and their loved ones. Anybody who has read the Lindsay report is aware of the agony endured by those people whose loved ones were ill or dying in a situation where people did not understand what was happening to them and where there were all types of prejudices and stigmas. Some of that stigma persists to this day. That is why it is so important that this Bill should be referred back to the Department and returned for our consideration only when it has been cleansed of all these negatives. If that is done, we can then support the legislation, grateful to the Minister for providing the necessary assurances to those who have suffered.

That is what we are here to do. Parliaments are supposed to do the right thing; they are not supposed to do wrong. Although we may sometimes unwittingly make mistakes, the victims' groups have pointed out those mistakes in this particular case. They are asking us to put this right and it is up to us to do so. If the Minister is willing to excise the offensive sections, there is no question that she will have unstinting praise. Even at this late stage, I hope there is some recognition of what must be done.

One can look for hidden agendas and for clues as to what may be going on. It is significant that the information was not given to the groups prior to 20 June. The absence of an explanatory memorandum is a further indication that all is not as it should be. None of us is a parliamentary draftsman and we all require clarity in regard to legislation. For media persons, whose job it is to transmit accurate information to the public, explanatory memoranda are just as important. That is how the process of translation works. Without it, we are at a grave disadvantage. In this case, where other elements were slipped in sneakily under the guise of an insurance scheme, there was no explanatory memorandum to alert us to this fact. I confess I did not appreciate what was being done in this regard until quite late. As an Opposition Member and Labour Party spokesperson on health, I am grateful to all the organisations for providing the valuable information that has guided us in what must be done.

I do not have the medical expertise of Deputy Twomey but I broadly understand the points he made. No test is 100% accurate. Reference is made in the Bill to the ELISA test. I am unaware of another instance in which a specific medical test is mentioned in legislation. What I am more sure of than anything else in the area of health is that technological advances are taking place so quickly that within six months of this Bill being passed, there will be a better test that will identify those persons whose condition will not be detected by the ELISA test.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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The Bill provides for that eventuality.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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That is not clear in the Bill. The ELISA test is set as a yardstick.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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It is provided. I am trying to be helpful.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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I ask the Tánaiste to listen to what I am saying because I have received legal advice on this. This advice states:

You have no doubt noticed that not only does the amendment in the Bill narrow the definition of a positive diagnosis to the presence of markers but the only alternative provided is a record of jaundice, and you will recall that it is possible to have subacute hepatitis without any apparent jaundice.

I am neither a lawyer nor a doctor but I know enough to be aware that what is happening here is wrong. As long ago as the publication of the Finlay report we knew there were people who did not fit neatly into a particular categorisation and were not easily tested. In such cases, there was no scientific test that would allow a specialist to say definitively that the person had hepatitis C and that the source was evidently a contaminated blood product.

Page 176 of the Finlay report states: "However, we now have evidence that it is also possible, although apparently rare, for a person to be infected and subsequently lose both detectable virus and indeed detectable antibodies." Deputy Twomey has pointed out the limits of the ELISA test in this regard. This is what happened in the case of the person identified as "Donor Y". The Finlay report goes on to state: "While we have no laboratory means of identifying these persons, we have, however, taken a history of symptoms or signs for those who received BTSB anti-D." In other words, people were listed on the basis of their symptoms. That is how the matter was determined by Finlay.

I welcome the establishment of the insurance scheme. Although we have tabled some amendments, there is no great difficulty with it and I am pleased the HSE is to manage it. This represents a long awaited vote of confidence in the executive. It is entirely unnecessary that the nursing home repayment scheme, for example, is being contracted out to a private company. However, I remind the Minister that problems remain in regard to accountability. I sent a letter to the HSE last August and received a reply only last week, which reply came from the Department rather than the executive. We have not yet reached a satisfactory situation in regard to speedy responses. If the HSE is to process this scheme — as it should — it must ensure efficient methods are in place for providing information, dealing with claims and so on. It is well able for the task.

To return to the issue of the loss of consortium, the Tánaiste spoke this morning on the Order of Business about second and third relationships. This is something of a canard. We are talking about young people who are growing up in the shadow of this condition. This shadow will linger over their future whether they marry, have a same-sex relationship or whatever. That shadow will always be there. They are the people who are being excluded in this Bill from access——

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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They are not excluded.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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There are requirements in the Bill. The Tánaiste read them out.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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That is not true.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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The section is quite specific about people having to fulfil certain requirements.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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The persons to whom the Deputy refers are entitled to full compensation.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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Not if they do not fulfil the requirements the Tánaiste has set out in the Bill.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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They are very limited.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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The Tánaiste has set out limiting requirements.

Photo of Mary HarneyMary Harney (Dublin Mid West, Progressive Democrats)
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The consortium limit relates to the person with whom they form a relationship post-diagnosis. We are not talking about the individual; they will get full compensation.

Photo of Liz McManusLiz McManus (Wicklow, Labour)
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I am not arguing about the people who are within the remit of the Bill but about the people who are outside it. It is interesting the Minister does not appear to be able to take on board the fact that it is the people outside the provisions of this Bill who concern us. We are delighted for the ones included in it. Good luck to them. However, our concern is for the people who have been marginalised, or will be if this Bill is passed, and who should not be.

This is not just a case of me being political, although I do not see the point of complaining about politicians being political. This is about organisations who are by now experts on this issue, such as Positive Action, the Irish Haemophilia Society and the Irish Kidney Association.

The Irish Haemophilia Society has stated that during the course of the long negotiations and discussions between the representative groups and the Department of Health and Children there was never any indication that the Government intended to draft legislation which was not stand alone and which would, in fact, attempt to change the parameters for the existing 1997 and 2002 compensation Acts. The society points out that if these sections are not deleted it will mean some individuals will be disentitled to enter the hepatitis C compensation scheme. The numbers are not large but they are significant and the groups cannot disenfranchise any group no matter how small their number may be. Among those who would suffer would be persons who had hepatitis C but never had a positive ELISA test. Minors who were affected with hepatitis C at a very young age would be discriminated against with regard to the ability of their future spouse or partner to claim a loss of consortium.

I thought I would not require half an hour for my contribution but, in fact, I will have to limit my comments. Judge Finlay, in the introduction to his report of March 1997, said a few words that are worth recalling:

The examination of the individual human suffering and hurt occasioned by the infections of Anti-D and other blood products with hepatitis C has been for all of us who have been engaged in the work of this Tribunal, a deeply distressing and very emotive experience.

Our task however has been to ascertain the facts which have been referred to us and reach the conclusions requested in an entirely detached and unemotive manner leaving aside great sympathy felt for the victims.

That task has been eased by the courage and indeed moderation with which the victims have given their evidence and by the wholehearted cooperation which has been afforded to the Tribunal by all parties involved in it and by their legal representatives.

That is quite striking. That is the record of the organisations that are asking us to rectify this Bill. Let us remember where we are coming from. The people who suffered so much showed moderation and a willingness to co-operate. They are still willing to co-operate but they seek the deletion of the sections of the Bill that offend them and members of this tiny community. That is all they, and we, seek. They are happy to negotiate.

Let us get on with the business of providing insurance and we can return to the matter if there are issues that can be dealt with in a compassionate way. The Finlay report was accepted by the Oireachtas. The legislation that flowed from that report was accepted and passed by the Oireachtas. Why is the Minister trying to row back on a few basic rights and entitlements that mean a great deal to the people concerned? We who are healthy do not have to worry about these matters. We can only use our imagination. I ask the Minister to accept our motion. She should refer the Bill back to the parliamentary draftsman and excise the parts that are offensive and will have a negative impact on the entitlements people have under the law. That is all we ask and we will applaud the Minister for doing that.

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I am sorry that the Tánaiste must leave. I had hoped she would stay for the duration of the debate. I wish to share time with Deputy Gormley and Deputy Catherine Murphy.

Séamus Pattison (Carlow-Kilkenny, Labour)
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That is agreed.

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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Yesterday, representatives of the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Position had to come to the House and spend long hours lobbying against the passage of this Bill, as presented by the Tánaiste, Deputy Harney. They should have been here today to witness the fruits of many years of hard work and campaigning on their part. Instead, the experience they are now going through must be compounding the many years of hurt for them and their loved ones.

These groups represent the people who were infected by contaminated blood and blood products — blood transfused into their bodies by an agency backed by the State, an agency people had every right to trust. That trust was cruelly betrayed. People have died as a result. Many more have suffered and continue to suffer. Their lives have been blighted and their life expectancy has been dramatically curtailed. They and their families have gone through and are still going through what can only be described as a living hell.

It is disgraceful that these people have had to lobby and negotiate for the past nine years, since 1997 and throughout the terms of office of this Government, to obtain legislation to provide a scheme of assistance with insurance. Such a scheme would allow people infected with hepatitis C and HIV to obtain insurance on the same basis as healthy members of society. With other Deputies, I have repeatedly raised the need for such legislation in the Dáil. When the Government's legislative programme was published on 24 April this year we welcomed the fact the Bill was finally on the way.

In that programme, the Bill is described as a Bill "to amend the Hepatitis C Compensation Tribunal Acts 1997 and 2002 in order to provide for the establishment of an insurance scheme for persons who have been infected with Hepatitis C or HIV from the administration within the State of blood or blood products". However, the Long Title of the published Bill describes the Bill as an Act "to amend the Hepatitis C Compensation Tribunal Acts 1997 and 2002 and to make a related amendment to the Health (Amendment) Act 1996". There is a significant difference between the two. I note also that while the title of the new Act is to be the Hepatitis C and HIV Compensation Tribunal (Amendment) Act 2006 as described in the explanatory note circulated to Members of the House after the commencement of the Minister's contribution to this Second Stage debate this morning, at the Order of Business this morning the Minister was of the opinion that we had already received the explanatory memorandum with the text of the legislation. It is a shambolic way to go forward with legislation of such import.

The Title of the Bill presented does not refer to HIV. Section 7 genuflects to this very important focus of the legislation, stating "This Act may be cited as the Hepatitis C and HIV Compensation Tribunal (Amendment) Act 2006." The reference to HIV should not be optional. It is an integral focus of the Bill and should be boldly referred to in the Title at all times. Who seeks to shroud the full purpose of this legislation? Deputy McManus has already pointed out the failure to even acknowledge its key purpose and has rightly drawn the House's attention to the first amendment presented by the Minister for tomorrow's Committee Stage debate.

When the groups read the detail of the Bill they were shocked to find they had become the victims of what can only be described as a legislative ambush by the Minister. Instead of providing the insurance scheme as promised and leaving it at that, the Minister has used the opportunity to make other far-reaching amendments to existing legislation. The effects of these amendments will be discriminatory and, if enacted, will represent yet another betrayal of people affected by contaminated blood products.

The four groups have stated the case very well. Like other speakers, I am grateful to them for highlighting the totally unacceptable sections of this Bill which must not be enacted. The Bill makes fundamental amendments to the Hepatitis C Compensation Tribunal Act 1997 which will significantly limit the categories of persons entitled to make claims for compensation and for provision under the health code. The groups were not informed until 20 June of these radical proposals which are unacceptable and should be opposed. The Minister proposes that persons infected with hepatitis C are to be identified solely by scientific tests, whereas currently a clinical diagnosis of hepatitis C is accepted by the tribunal and the High Court and for all other purposes such as entitlement to health provision. What the Minister proposes now is that although a person has had an identified infected batch of blood or blood product such as anti-D and such person has symptoms compatible with HIV infection that person will no longer be able to establish entitlement to compensation and to special health provision. In 2002 the then Minister for Health and Children, Deputy Martin, brought in an entitlement for the spouses and partners of hepatitis C and HIV sufferers to make claims for compensation for loss of consortium, in other words, for the damage caused to their relationship with their partner as a result of his or her infection with either of these communicable diseases. The Minister now proposes to exclude certain categories of person from such entitlement. The spouse or partner of a young person infected at birth with hepatitis C was entitled to claim compensation up to now. Such partners and spouses will now be excluded and, no matter what protest the Minister makes, that is the truth.

The groups have described this as a grossly insensitive and retrograde proposal. They have described the proposed changes as surprising and restrictive amendments to the existing code for which there is no rational basis or public demand. They have asked for the support of all Deputies from all political parties and all Dáil groups for their position. I hope the Members on the Government side will heed that call and use their influence to get these obnoxious sections struck out. In regard to the major party, which now has a new arrangement for policy decision making, will those who were so vocal recently ensure that their party in Government will respond to the call of these affected groups and victims?

Sections 1(b), 2 and 6 of this Bill represent a legislative ambush. These are totally unacceptable provisions, piggy-backing on the central and long overdue provisions for insurance. These people want the insurance scheme set up as soon as possible. It is literally a matter of life and death for them and for their families. I call on the Minister not to go ahead with the Committee and Report Stages of this Bill tomorrow, to take out the offending sections, bring the Bill back next week without those sections, go ahead with the insurance provisions and fulfil her obligations to these people. Anything else will be nothing other than an act of gross bad faith.

Photo of John GormleyJohn Gormley (Dublin South East, Green Party)
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Like other speakers, I spoke yesterday to a number of the lobby groups who came to this House to speak directly to us because of their concerns about this legislation. I was struck by their common sense, their intelligence and their remarkable good humour in the face of adversity. I asked myself afterwards if I could be so good-humoured in the face of so many difficulties. I do not think I could. I would be angry at the cold-hearted, penny-pinching bureaucracy. I would be angry at the insensitivity of this Government. I would be angry at the incompetence of the State's health service and the lack of accountability. However, these people have had many years to be angry and at this stage what they are trying to do is rebuild their shattered lives. The Minister is not making this rebuilding process easy. She is making it extremely difficult.

Throughout our lives we sometimes bring things upon ourselves when we make specific choices. In this instance the tragedy of these people's lives was not brought about by them but by the State and I am struck by the total lack of compassion on the part of this Government. These people are seeking justice. What we have here is a very peculiar inversion. The victims, in this case, are the guilty ones, and they are the prisoners of their own illness. I appeal to the Minister to set these people free if she believes in justice, and if there is a compassionate bone in any of the bodies on the Government side of the House.

I think back to the very early days of hearing about this issue. I think particularly of the days of Charles J. Haughey when an election was forced upon us. It was the first time the Minister of State's party was in Government. I think about the recklessness of the pharmaceutical companies and the hard heart of the State. There was also a lack of accountability.

There are Ministers who have the courage to stand up to their officials. Deputy McManus asked earlier who was driving this issue and what the motivation was. The officials in the Department drive the agenda. However, a good and courageous Minister will stand up to the officials, recognising that there is a deep injustice. I do not see the Minister, Deputy Harney, doing so. We have heard that she previously stood up to vested interests and that she is a politician of conviction. I do not see that conviction here.

She has left the Chamber now, but perhaps it is not too late and the Minister of State, Deputy Tim O'Malley, can speak to her. I hope the Minister will not adopt a Margaret Thatcher type of attitude of not caring and that it does not matter what these people say. I hope there will be a dialogue and the Minister will listen to the sound arguments.

I took grave exception to the Tánaiste accusing those of us expressing concerns of playing politics. We are not playing politics. We are politicians representing the views of those of us who spoke to us yesterday. These people have genuine concerns.

I support the Labour Party motion. Like some previous speakers, I am not a medical expert or an expert on this issue. I am happy to listen to experts and those people who have been infected and whose lives have been radically changed. I spoke to Mr. Brian O'Mahoney and it is interesting to read from his memo on this legislation. It indicates clearly that this issue was always meant to produce a stand-alone Bill. The memo states:

During the nine years of discussion and communication in relation to this, there was never any mention of linking this to the hepatitis C compensation scheme. Despite this, when the Bill is published we now see that it is linked to the hepatitis C compensation scheme, and the insurance Bill is being used to retrospectively change some of the provisions of the Hepatitis C Compensation Tribunal Acts of 1997 and 2002. This will mean that some of our members and some members of other groups — Positive Action, Transfusion Positive and the Irish Kidney Association — will be disenfranchised and prevented from taking part in the compensation scheme.

We have heard from previous speakers and it is very clear at this stage what these various groups want. They want a stand-alone Bill. I have put down amendments to the effect that sections 1(a) and 1(b) must be deleted, along with section 2 and section 6. That is clear.

I have stated that I am not an expert, but I wish to discuss the ELISA test. I did not know what the test was, and although I knew what a consortium was, it was a different type. The information we have is that this test is not conclusive. There have been many instances where people were diagnosed and later found not to test positively.

A letter was sent to the Tánaiste by DettaWarnock of Positive Action, dated 15 February 2006. It was in response to a letter from the Tánaiste. A relevant section of it states:

Following a targeted look-back programme by the IBTS informing all women who received an infectious batch but who had tested negative on the original screening or maybe were not screened in 1994, we have had a number of new members in the category "women who received a contaminated batch but are currently testing negative to hepatitis C". The maximum number this could be is 3,358 relating to 1977 and 17,429 relating to 1991-94.

However, we have only a very small number on our database, approximately 40. These women are suffering from severe bad health which has been continuously documented over the years, following receipt of contaminated anti-D. We are only requesting that you consider those who have a retrospective diagnosis from their consultant hepatologist.

That is the request, and there is room here for reasonable compromise. I do not understand why the legislation is being rushed through in the second to last week of the session. There are clear issues here, where the people directly affected have major concerns. It seems the Government will simply ignore them.

I stated earlier that this reminds me a little of the time of Mr. Haughey, who has passed away, and his attitude. It seems that the same attitude is prevailing here. At the time, Mr. Haughey did not refer to people with haemophilia but spoke in terms of the Government's fiscal policy being undermined. He stated that "the Government would not tolerate any attempt to undermine its authority in financial matters." It seems that we have not learned anything. What we are discussing here are financial matters when we ought to be speaking on people's health.

Photo of Catherine MurphyCatherine Murphy (Kildare North, Independent)
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I do not take it lightly when groups such as Positive Action, Transfusion Positive, the Irish Haemophilia Society or the Irish Kidney Association contact me on an issue such as that which we face today. As far as I am concerned, those groups are experts because they are connected to people living with the problem. There is nobody with more expertise than those who live with this problem. While the broad thrust of this Bill is important to victims of contaminated blood, there is no doubt there are problems in it.

I had good reason to pay close attention to this scandal when it emerged in the 1990s, as I had received some anti-D injections. Like other women, I was happy to receive the product to prevent problems occurring with subsequent pregnancies. A decade or two earlier, such a remedy was unavailable to women. Some women would have lost full-term babies as a consequence. The last thing a woman who had given birth and received an anti-D injection would have contemplated was that they, their partner or subsequent children would be infected.

After I received the anti-D injection in the years between the mid 1970s and the 1990s, I was tested. I was one of the fortunate women who had no negative implications. However, I was tested at the same time as women with whom I was friendly or acquainted. Some of them have experienced the most profound consequences. In some cases lifestyles have been modified and social lives drastically changed. This has had an impact on relationships and some have not survived the additional problems facing those families. This is not an insignificant difficulty and it is important that it is included in the consideration of this Bill.

Some women have suffered severe consequences as a result of the illness and also of the medication. They may have feelings of guilt when one of their children is contaminated. The four groups stated yesterday that victims do not wish to be excluded. Their statements highlighted the core of the problem, which was that they were not listened to. The official mindset of that time might still have an impact today.

The year 1997 seems to be significant in terms of Dáil debates on the subject. I refer to contributions made by Deputies Cowen and O'Donnell in 1997. Deputy Cowen subsequently became Minister for Health. He referred in his contribution to Deputy Noonan, then Minister for Health, and stated:

At the time he made that announcement, he never mentioned health care which was and remains a primary consideration of victims. The Minister continues to believe that this was all about money and lawyers. It was a flawed belief on his part and explains much of his mishandling of the affair.

The compensation scheme continues to fail a fairness test on many counts but the Minister has resisted, despite numerous Dáil debates and calls from victims to make any substantive changes. This Bill at last delivers on the promise in the programme for Government to pay fair compensation, but it is only happening now, over two years and four months on, in the dying days of this Administration.

In the same contribution Deputy Cowen stated:

It has also been a concern of transfusees, where their medical records are destroyed or where donors have not returned since 1 October 1991 when testing was introduced, that they are not in a position to prove in the normal fashion that they positively received an infected blood product or an infected transfusion. This is something about which Transfusion Positive lobbied extensively before the ad hoc tribunal began its hearings. The ad hoc tribunal has worked in a satisfactory manner to date for transfusion victims in relation to the manner in which the standard of proof is applied, that is, the balance of probability.

It is ironic that the groups in question only had sight of the Bill in the past week on 20 June 2006. I agree with Deputy Cowen that there was a failure to understand and a failure to listen and this failure is being repeated.

Deputy O'Donnell stated in 1997:

Sadly, it has been a feature of this Administration's handling of the matter that all concessions have been wrung from it and we have not seen a generosity which derived from the Government's own sense of moral or legal responsibility to the victims . . . . .

It is no thanks to the BTSB that there are not 60,000 women infected with hepatitis C. Sixty thousand women were screened, but many have not been screened. Some infections may be dormant, or transient, or may have cleared. We know that 1,600 women are infected.

Deputy O'Donnell further stated, "It appears some women have liver disease but are not testing positive for hepatitis C." This was acknowledged in 1997 by a member of the Progressive Democrats and a colleague of the current Minister for Health and Children.

The experts who say there are problems associated with this Bill must be heeded. We are unsure of the amendments which the Tánaiste proposes and the House needs to be informed before the end of this debate tomorrow so that Members can make a judgment call on the changes in the Bill.

3:00 pm

Photo of Peter KellyPeter Kelly (Longford-Roscommon, Fianna Fail)
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There is no doubt that what happened regarding hepatitis C is the greatest public health tragedy since the foundation of the State. Large numbers of persons were infected with an incurable disease which has changed their lives and prospects as well as their family and work relationships. No monetary support or compensation can ever undo the damage. However, we as legislators must do what we can to make life easier for the victims. I offer my sincere sympathies to the families affected. It was an absolute disaster.

This House has already enacted two Acts to deal with this tragedy, the Hepatitis C Compensation Tribunal Acts 1997 and 2002. This Bill seeks to establish a statutory scheme to address insurance difficulties experienced by persons infected with hepatitis C and HIV through the administration within the State of blood and blood products. It is a vital measure designed to give further support to people diagnosed with hepatitis C and HIV as a result of the administration of contaminated blood products.

The consultative council on hepatitis C is the statutory body established to advise the Minister on all aspects of hepatitis C. Millions of people all over the world have this virus infection and most people with hepatitis C live as long as anyone else. Many never develop serious problems but some will need active treatment at some stage of the illness. A small number of people with hepatitis C have progressive liver disease that does not respond to existing treatments. However, doctors are making real progress in finding better treatments. Nonetheless, since 1997 it has been obvious that the inability of those infected to buy life assurance or mortgage protection policies is further compounding the damage they had already suffered. These people have suffered enough. On the enactment of the Bill, three types of recompense will operate. To date, the Hepatitis C and HIV Compensation Tribunal awarded more than €660 million to approximately 2,000 people. Of these, approximately 1,000 were anti-D recipients and approximately 700 were transfusion recipients, renal patients or persons with haemophilia. The remainder were secondary claimants or dependants entitled to claim under a range of headings including "loss of consortium", "loss of society" and "carer's expenses".

Those who contracted hepatitis C through the administration within the State of blood or blood products are entitled to a special card under the Health (Amendment) Act 1996. This is termed the "HAA card". HAA cardholders are entitled to avail of a range of services and products without charge including general practitioner services, prescribed drugs, medicines and appliances, dental services, ophthalmic services, home support, home nursing, counselling services, physiotherapy, chiropody and podiatry. The Bill adds life assurance support to the entitlements of cardholders which will cost an estimated €90 million to provide over the life of the scheme. I applaud the Government on the introduction of a life assurance scheme which no other country has put in place. The Bill demonstrates the State's commitment to working with the victims of infection to provide every possible support. The scheme will cover the insurance risk of more than 1,700 people who are entitled to avail of assurance products, irrespective of any other medical condition, on payment of the standard premium paid by an uninfected person of the same age and gender.

To ensure a consistent approach to all three supports, Government agreed to define hepatitis C diagnosis in the Hepatitis C Compensation Tribunal Acts 1997 and 2002 and the Health (Amendment) Act 1996 in accordance with the scientific ELISA test. Alternatively, if a person has displayed symptoms of acute infection with jaundice up to 16 weeks after the administration of an infective agent, the resultant infection also comes under the terms of the Act. While the ELISA test has had its doubters, the Tánaiste pointed out this morning that there has been significant progress in its development. A similar scientific test definition for hepatitis C diagnosis is used in other jurisdictions where compensation schemes operate including the United Kingdom and Canada. The sections of the Bill setting out the definition of a diagnosis will not affect claims already made to the compensation tribunal. Symptoms linked with hepatitis C include tiredness, aches, pains and depression, some of which are common to a number of conditions not associated with the disease. To ensure the support schemes operate in a fair and equitable manner and that those determining eligibility use clear consistent criteria, it has been decided that diagnosis will be determined by means of an internationally accepted test. We should remember that the expert group on hepatitis C, chaired by the Department's chief medical officer and including leading liver consultants and a member of Positive Action, agreed in 1998 that eligibility for the Health (Amendment) Act card should be based on a positive diagnostic test for hepatitis C.

The objective of the scheme set out in the Bill is to provide reasonable access to the insurance market, within certain limitations, to those for whom the cost is prohibitive or cover is unavailable. From its inception, the consultative council on hepatitis C highlighted the obstacles people encountered in obtaining insurance cover. The Department of Health and Children sought advice from life assurance experts on the feasibility of developing an insurance scheme, the parameters of which were established in a subsequent phase of work. In devising the draft scheme, officials worked closely with the representative groups to agree its provisions. On foot of representations by the Irish Haemophilia Society, it was agreed that the small number of persons infected with HIV only would also be eligible for support under the scheme. Most persons with haemophilia who are infected with HIV also have hepatitis C.

For insurance purposes, persons with hepatitis C and, or, HIV fall into two categories. While those in the first category can obtain insurance, it is only on payment of increased premiums. Those in the second category are deemed by the insurance industry to be uninsurable. The Bill provides that the State will pay the additional risk premium where a life assurer is willing to provide cover subject to an additional premium or assume the risk of the life cover where an assurer is unwilling to provide cover to an applicant. In each case, the person requiring insurance will pay the average basic premium an uninfected person of the same age or gender would pay. The scheme will be administered by the Health Service Executive and made available in respect of all standard life assurance policies offered by those life companies authorised to transact life assurance business in Ireland that choose to take part. The scheme, which will be administered under the aegis of the Health Service Executive, will be available in respect of all standard life assurance policies offered by life companies which are authorised to transact life assurance business in Ireland and who choose to take part in it. Life assurers who wish to take part in the scheme will enter into an agreement to abide by the rules of the scheme, which will also provide for appeal in the event of a dispute.

The parameters of the scheme mean life assurance with maximum cover of €400,000, or seven times the earned income of the eligible participant or his or her partner, or both, in respect of the tax year in which the proposal is submitted and up to a maximum of €500,000, will be available to the age of 75. These sums will be indexed to keep pace with the consumer price index.

Also being provided up to the age of 75 is mortgage protection cover on purchasing, changing or improving a primary residence, up to an overall maximum of the average house price in Dublin plus 25% or €375,000, indexed in accordance with the TSB/ESRI Dublin house price index.

For an initial period of 12 months from the commencement date or, if later, three years from the date hepatitis C or HIV is diagnosed, all persons with hepatitis C or HIV will be entitled to apply for cover under the scheme. After that, a waiting period will apply, during which full cover may be phased in over two years for the under-50s and three years for over-50s.

In order to ensure equity there will be an open period for young people, who are not ready to avail of insurance or mortgage protection at this time, until the date of their 30th birthday.

The maximum age of entry into the scheme will be 65 and the age at which cover will cease will be 75. However, persons aged up to 75 will be able to take out insurance cover in the first year of operation of the scheme.

On the question of consortium, the Bill proposes to clarify that compensation will be awarded to spouses and partners of persons where the relationship had commenced before diagnosis of hepatitis C or HIV. New partners or spouses of infected persons who knowingly entered relationships after the diagnosis of hepatitis C will be unable to claim damages for loss of consortium. However, other headings of claim for compensation by persons in this category, suchas loss of earnings, loss of society and post-traumatic stress, will not be affected by the amendment.

We must acknowledge in the strongest possible terms that the infection of people with contaminated blood products was catastrophic for them. No monetary support or compensation can ever repair the damage done. However, Ireland is doing more for victims than other countries in similar circumstances.

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)
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Photo of Peter KellyPeter Kelly (Longford-Roscommon, Fianna Fail)
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Accordingly I wish this Bill a safe passage so the many people who are deprived at the moment of access to the insurance market because of their hepatitis C or HIV infection can avail of insurance products.

Today I was contacted by the Irish Haemophilia Society and I have passed on its concerns. Our health is our wealth and we must treat all cases with the care, attention and dignity that a person deserves. People must come first at all times in our health services.

Photo of Bernard DurkanBernard Durkan (Kildare North, Fine Gael)
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I propose to share time with Deputy Hayes. I have considerable concerns about this Bill. Despite what the Tánaiste said in the House this morning, and her protestations to the effect that it represented an improvement on existing legislation, I am not so certain, nor are many women around the country. Because of the history of hepatitis C over the past ten years in this country we must be careful not to exclude or impede any person who received contaminated blood treatment, notwithstanding they may have since tested negative because that does not necessarily mean they will remain unaffected.

There now exists a group of women who have experienced consistently poor health over a long period of time and who are concerned they will remain that way. Whether these women, or their spouses or partners, contracted the infection by primary or secondary means is immaterial. The initial problem arose because they followed to the letter a procedure as advised by the State, medical practitioners and the Department of Health and Children. As a result, they and their families' health suffered dramatically.

The Government will require an ELISA test, which it states is the definitive test to determine eligibility. That may well be the case and it may draw a line in the sand but that line will not apply to all potential sufferers, including those who might be discovered at a later stage. Whatever the protestations of the Tánaiste that is a fact of life.

The trauma and, in some cases, the death of those who were diagnosed and suffered in the past are well-known. We all know people, friends and constituents who received treatment and continue to receive it. They have undergone chemotherapy and still do so. Many have lived for the past ten years with the clear knowledge that they will never have good health again and that there was serious doubt about their long-term health prospects.

I do not care what are the logistics. In such a situation we have a duty as legislators to reassure people that what happened before cannot happen again. More particularly, we must also ensure that any entitlements they have, whether to insurance or anything else, are protected so they are not penalised, excluded or in any way further punished for doing the right thing. They were asked to accept the treatment, which they did, and they have paid for it ever since.

As a medical practitioner, the Ceann Comhairle would be more familiar with this type of situation than the rest of us. I am also quite sure he is very conscious of the concerns of the women who suffer from hepatitis C as a result of receiving anti-D. Their families, including their extended families, have suffered and continue to suffer.

I referred to long-term health prospects and life expectancy. These people followed approved medical advice and paid the price. Any intervention of this stage must take full account of what might happen over the next five years. There will probably be more cases. Correspondence from Detta Warnock expresses concern that there are a number of women who, along with their families, may find themselves at a disadvantage following the passing of this legislation. They will be added to that list of people who have paid a high price. Why should that happen? Why should we countenance such legislation brought into the House in the dying days of this session? This issue requires debate over a longer period. We must consider the experiences of the past and the likelihood of recurrences. The Tánaiste contradicted this earlier but there is other opinion. Who is right and who is wrong? In those circumstances, one must err on the side of safety and protect the people who so far have not been protected or those who are likely not to be protected in the future by virtue of the passage of this legislation.

I had the sad experience of attending the funeral of the late Mrs. McCole. It is a memory which will stay with me for the rest of my life. A full church witnessed the procession of the coffin of Mrs. McCole down the aisle, which was followed by her daughters, and it brought home in the most graphic way the magnitude of what happened in her case. I know several women in my constituency who are suffering and who have this threat hanging over their lives. I am not being chauvinistic but if something like this happened to the male population, there would be absolute outrage, and rightly so. At the time, for some unknown reason, the magnitude of the offence and damage done and the cruelty and trauma the women experienced was not recognised.

Why not improve the situation for the sufferers? What is wrong with covering every possible angle to ensure nobody is excluded from the right to have a reasonable quality of life in so far as possible? We should not proceed with the legislation until a sufficient appraisal and a much wider examination have taken place of all its implications. I have no difficulty improving the situation in respect of insurance for the people concerned. However, I have a major concern about the number of people who might be excluded.

We now have the benefit of hindsight and for that reason, we should not do anything which would in any way curtail the rights or entitlements of sufferers or those who are likely to become sufferers following a diagnosis in the future. There is an incubation period which can vary from one case to another. Although not necessarily as medical practitioners, we have all dealt with cases where an illness, not necessarily hepatitis C, was not diagnosed for several years and where, with the benefit of hindsight, it might have been possible to diagnose it but it could not have been confirmed. Is a person in those circumstances likely to be deprived of their entitlements as envisaged in the Bill? From the information Members on all sides and party leaders have received, there would appear to be a serious doubt. If there is a doubt, we must err on the side of safety.

It is not as if the number of cases will continue to grow but even if it did and large numbers of women and their spouses or partners would be entitled to compensation and cover as envisaged under the insurance element of this legislation, we should not deprive them of it. Why make a bad situation worse? Why not confront the situation and say mistakes were made in the past, which should not have been? We now know about those mistakes and there is no excuse for doing anything which would in any way militate against those who have not yet been diagnosed or those who have been cleared but might be diagnosed in the future. That also applies to people's immediate family.

As legislators we have a duty to all the people but particularly to sufferers of hepatitis C who were recipients of a treatment which was deemed to be good, safe and necessary. We now have no excuse but to ensure the legislation we pass encompasses all of the aspects of the trauma, ill-health, suffering, pain and poor quality of life hepatitis C sufferers have experienced since the initial problem arose.

Photo of Tom HayesTom Hayes (Tipperary South, Fine Gael)
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I thank the Ceann Comhairle for the opportunity to speak on this very important Bill. I am disappointed, like many others, that the Bill has not come before the House as a straightforward insurance Bill in the form that those affected expected. Making amendments to a sensitive Bill of this nature does not project a positive image of a caring Government. On the contrary, it suggests the Government is more interested in protecting itself than looking after the interests of those hepatitis C sufferers whose condition is definitely the fault of the State, which all Members accept.

I choose to speak on the Bill because I know people who have had the shadow of hepatitis C hanging over them for some time, having received blood transfusions at the time the infection was spread. The trauma the victims and their families suffered is nothing short of disgraceful. Now they are faced with disappointment with regard to this Bill.

I have personal experience of this matter, having visited a lady infected with hepatitis C. I have heard her describe her feeling of helplessness and her worries about the normal things in life which we all take for granted, such as her family's future. She is not bitter but she expected to get fair play from the authorities and the Government. It needs to be said but has not been said often enough in this debate that those involved expect fair play. The patients' rights group has shown nothing but good faith throughout this process. Is our message to it that its good faith was in vain, that it cannot trust the Government and that future victims of the State's tragic mistakes cannot trust the State to compensate appropriately for those blunders?

We must focus on those suffering from hepatitis C and understand the human side of the situation. The victims' lives are forever changed by the fact they were given infected blood products through no fault of their own. The range of symptoms that victims must endure, including aches, pains, fatigue and so on, makes everyday life more difficult than it should be. They are left with a heavy burden to bear. The State must not only show a willingness to make amends for its mistake, it must also show compassion to those affected.

Introducing the provision for a scientific test, the ELISA test, to prove the sufferer has hepatitis C will almost certainly limit the number who can avail of the insurance scheme. Many of my colleagues have referred to the many limitations of this test — its failure to diagnose conclusively is a real worry. Given these limitations, why are we incorporating it into legislation? It does not make sense to do so. We have had several examples of flawed legislation in the House in recent weeks. Why are we adding another flawed Bill to those already on the Statute Book?

The victims seek a stand-alone Bill to deal with insurance only. How can we justify not giving them this limitation because of the test? I appeal to the Tánaiste to give the victims of hepatitis C the Bill they seek. They are only a small group. The State made a terrible mistake in administering contaminated blood products. The least we can do is seek not to cause them any further anguish. Unless we amend the Bill to make it a stand-alone Bill dealing with insurance for victims and their spouses, we will continue to let down the victims rather than seeking to address the situation comprehensively. That is their plea. Only a small number of people are involved and I urgently request to Minister to bring forward such a Bill.

Photo of Michael FinneranMichael Finneran (Longford-Roscommon, Fianna Fail)
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I wish to share time with Deputy Callely.

Photo of Rory O'HanlonRory O'Hanlon (Cavan-Monaghan, Ceann Comhairle)
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Is that agreed? Agreed.

Photo of Michael FinneranMichael Finneran (Longford-Roscommon, Fianna Fail)
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I compliment the Government, in particular the Minister, Deputy Harney, on bringing forward this necessary Bill to deal with an important outstanding matter regarding insurance protection and the Government's response to the hepatitis C scandal which destroyed thousands of lives. A scheme of compensation is in place to help those affected and their families, but monetary compensation is nothing when compared to the loss of quality of life of people and their families in this great scandal that will affect our country for years to come. Some €660 million has been given out in compensation. So what? It is just to help people along. The medical card back-up is costing €15 million and this Bill will deal with the insurance aspect, which is necessary because insurance companies were prepared to treat those involved like lepers and not give them adequate insurance cover for life, mortgage or travel policies.

A sad situation had developed with regard to the people concerned and I am pleased the Minister has come forward with a Bill to deal with the matter. Consultations have taken place with the different associations and groups involved. I hope it will bring some further comfort to these unfortunate individuals who are the victims of a lifestyle imposed by the State by the provision of inappropriate products that caused terrible health damage to those who received them.

I am not sure exactly how the scheme will work but I take from the Minister's contribution that it has been set down in a certain way following consultations. I have had correspondence from the Irish Haemophilia Society raising concerns to which I feel duty bound to refer. I hope the Minister will discuss these concerns with the officials of the Department and will make contact with the society to find whether the difficulties can be ironed out.

We must be accommodating with regard to those affected by this scandal. We should not in any way create barriers to proper compensation, health care or insurance, which is provided for in the Bill. The Minister and the Government certainly do not want that to happen. If difficulties cannot be clarified, let us try to tease them out on Committee and Report Stages. Nobody in the House, including those on the Government side, wants to place further burdens on the victims of hepatitis C, and HIV in some cases. As Members of the Oireachtas, we have a duty to ensure the best possible health protection is afforded to the unfortunate people in question.

Debate adjourned.