Mary Harney (Dublin Mid West, Progressive Democrats)

While no monetary support or compensation can ever repair the damage done in this area, Ireland is doing more for victims compared with other countries in similar circumstances.

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 apparent and while it was relatively easy to find precedents for monetary compensation schemes, a scheme to address the insurance difficulties of this nature could not be found anywhere in the world, and as far as I am aware, this remains the position today.

The Department of Health and Children 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 parameters of the scheme and I have taken virtually all of the recommendations of the groups on board in the scheme's development.

Persons to whom this scheme will apply fall into two categories with regard to insurance matters: those individuals who can get insurance but only with increased premiums; and those individuals 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 currently unavailable.

Broadly, 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. The Bill also allows as a matter for priority for the development of a scheme for travel insurance. The scheme will be administered under the aegis of the Health Service Executive. Specific details on the administration of the scheme will be set out in regulations and an administrator will be recruited as soon as possible after the Bill's enactment.

The introduction in the Bill of an insurance support scheme on a statutory basis shows the continued commitment of the Government to the victims of infection. This scheme now brings to three the key forms of statutory support and recompense which the State has put in place for this cohort of people. There are already two supports in place. The first is the compensation scheme which is administered through the hepatitis C and HIV compensation tribunal. To date, the tribunal has made awards to approximately 2,200 people, including most of the 1,700 persons infected with hepatitis C or HIV, and a significant proportion of their spouses, partners or dependants. The total figure for awards made to the end of 2005 stood at €580 million.

The second support is the provision of a range of health care services without charge 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 received 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. The third form of recompense, the insurance scheme, will cost an estimated €90 million over its lifetime, which is estimated to be at least 30 or more years.

I will now deal with the detailed provisions of the Bill. The purpose of section 1 is to provide a definition of diagnosis for the purposes of the existing compensation scheme and the new insurance scheme. The symptoms linked with hepatitis C include fatigue, aches and pains, depression, dry skin and rashes. Many of these symptoms are common to a number of viral and other conditions not associated with hepatitis C. To ensure the support schemes operate in a fair and equitable manner and that those determining eligibility under the schemes use clear consistent criteria, the Government agreed that a hepatitis C diagnosis should be defined in terms of a scientific test or by reference to certain defined symptoms in respect of acute infection acquired within 16 weeks of the administering of the anti-D product.

The Bill, as originally circulated, proposed to use the enzyme linked immunosorbent assay, ELlSA, test. This test is accepted internationally as being the standard method for diagnosing hepatitis C for the purposes of the health care services. In practice, the ELISA 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 national virus reference laboratory uses the ELISA test to identify hepatitis C infection and in 2005, it screened over 52,000 samples for the presence of the virus. The anti-body tests used have been shown to have excellent sensitivity in the identification of hepatitis C in most individuals, except those who are immunosuppressed. The investigation of hepatitis C infection by means of the ELISA test is regarded as best practice in many countries, based on the accuracy of the test and, with the exception of investigating very recent hepatitis C infection, would be expected to be positive even in the absence of hepatitis C being active in the body. A similar scientific test definition of hepatitis C diagnosis is used in other jurisdictions like the UK and Canada where compensation schemes operate.

The expert group on hepatitis C, which is chaired by the Chief Medical Officer of my Department 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. In 1995, support groups pressed for a statutory compensation tribunal. A Bill was drafted with the assistance of John Rogers, SC, and Ivor Fitzpatrick and Company Solicitors. The Bill included the ELISA test as the basis for a diagnosis of hepatitis C.

Following discussions with the hepatitis C support groups and officials of my Department, I agreed to amend the Bill to include a number of other tests, any one of which will be sufficient for participation in the insurance scheme, eligibility for the compensation tribunal and the Health (Amendment) Act card. In addition to the ELISA test, the Bill now includes reference to the RIBA test and the PCR test. There is a provision to include any other relevant recognised test that may be developed in the future. These requirements will not apply to claims for compensation made to the tribunal before the publication of this Bill on 20 June 2006.

Section 2 deals with eligibility for compensation in respect of loss of consortium. Persons who were directly infected with hepatitis C or HIV are compensated at the compensation tribunal in their own right, on the evidence presented, for all the effects of hepatitis C and HIV, including its impact on their relationships in the past and into the future. The chairman of the compensation tribunal, Judge Anthony Murphy, has confirmed that this is the position. Moreover, in the case of young people, the tribunal and the courts rightly take into account the age of the claimant and recognise the consequences of infection on the future relationships of young people, particularly those who have not formed permanent or stable relationships. From time to time, claimants choose, as they are entitled to do, on this or any other element of a claim, to highlight this aspect of their case. This has always been the position and it will not change with the enactment of the Bill.

The Hepatitis C (Amendment) Act 2002 provided for the first time for compensation in respect of loss of consortium suffered by 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 that the expectations which they had of a normal family life were severely affected by their partners' condition. It is not proposed to alter this provision in any way.

Where a new relationship is formed in the knowledge of the hepatitis C or HIV diagnosis, it is intended that this particular head of claim will not apply. This is 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 partners, loss of services, loss of society, post-traumatic stress disorder, mental distress and dependency losses.

Section 3 allows the Minister to make regulations providing for the establishment, operation, administration and supervision of an insurance scheme. This will provide certain types of insurance to claimants who are 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; parents, brothers or sisters of infected persons who have themselves been diagnosed with hepatitis C or HIV infection; and certain other claimants, all of whom have been refused the relevant insurance on the grounds that they have been diagnosed positive for hepatitis C or HIV, or the administrator reasonably believes they would be refused if they applied for insurance or who are refused insurance 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, his or her functions, the conditions subject to which a benefit will be provided, not provided or ceased under the scheme. The scheme will provide life assurance of €420,000 or seven times the annual earned income to a maximum of €525,000 of the claimant or his or her spouse or partner of three years standing at the time the application is made or their joint income. All the amounts mentioned will be index linked to the consumer price index.

The scheme will provide mortgage protection insurance for the purchase, change or improvement of the claimant's primary residence to a maximum of either €394,000, which will be index linked, or the average Dublin house price plus 25%, whichever is greater. For the first year after the scheme comes into effect, an eligible claimant will be allowed to remortgage any property he or she owns to a total of €100,000.

Under section 3, the Minister is empowered to make regulations to provide for annual travel insurance. The Bill provides that travel insurance benefits will be covered by the scheme within six months of the establishment of its life and mortgage protection elements. A claimant who wants to avail of the full benefits of the scheme without restriction must make an application to the administrator within one year of the scheme coming into effect or three years of the date on which her or she was diagnosed positive for hepatitis C or HIV, whichever is the later. The exceptions are applications for annual travel insurance and life and mortgage cover by claimants under 30 years of age. Once the travel insurance element of the scheme is up and running, a claimant can apply for full benefits at any time.

Regarding young claimants, the Irish Haemophilia Society made a compelling case that persons with haemophilia infected with hepatitis C in their early years may not have reached the stage where they are ready to take out mortgages or life assurance policies. Accordingly, the Government agreed that the full benefits of the scheme would apply without restriction to eligible claimants up to the age of 30 years rather than be confined to the first year of the scheme.

With the exception of this group, claimants who make an application after the first year of the scheme's operation and 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 under 50 years of age, it is intended by regulation to specify a two-year phasing in period. For persons over 50 years of age, the relevant period will be three years.

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

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 of these conditions disregarded for the purpose of the scheme. Under it, the claimant will be entitled to benefits by payment of a premium that will generally be 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 not covered by the scheme and the application jointly benefits both parties, the other person will pay the same premium in respect of his or her benefit as any person of similar age, gender and health status and will not pay a higher joint premium in respect of the joint benefit than the joint premium charged for a joint application from two persons, neither of whom had been diagnosed positive for hepatitis C or HIV.

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 other than under the scheme, such will not be taken into account in calculating the maximum sum assured. The administrator will be obliged to submit a report and accounts to the Minister as directed, who will lay the report before the Houses of the Oireachtas. The report will not identify any claimant.

Section 4 outlines the appeals procedure to apply. Under this section, a person may appeal a relevant decision of the scheme within 90 days of being notified of the decision in writing. Following meetings with support groups, the length of time for appeals was increased from 28 days. The Minister will appoint one or more solicitors or barristers of at least five years standing to consider appeals.

The decisions of the administrator that can be appealed are a refusal to consider an application, a decision that a claimant is not eligible, a decision that a benefit cannot be provided, must cease to be provided or is partially or incrementally provided or a decision on the amount of the sum assured under the scheme. 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 both the appellant and the administrator.

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. If the appeals officer's decision is not being appealed to the High Court, the administrator will carry out the decision as soon as practicable. Each appeals officer will report to the Minister in writing at intervals to be decided by the Minister, who will lay copies of the report before the Oireachtas. The appeals officer's report will not identify any claimant.

Section 4 also provides for the establishment of a special account to pay costs arising from the scheme, including the cost of administration and the payment of benefits. The special account will be an account with the Paymaster General, be subject to whatever terms and conditions as the Minister for Finance will decide in consultation with the Minister for Health and Children and be subject to audit by the Comptroller and Auditor General.

The scheme administrator may specify any forms that he or she sees fit and the documents that are required to be submitted with them. These forms must be completed in full by an applicant and accompanied by the necessary documents. The 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, in particular circumstances, alternative documents.

Confidentiality is a prime consideration for 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 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, six months imprisonment or both. A person found guilty of an indictable offence will be liable to a maximum of €25,000 fine, 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. Section 6 provides that the same definition of hepatitis C as proposed for the purposes of entitlement to compensation will apply to the Health (Amendment) Act 1996, which entitles eligible persons with hepatitis C to a range of health care services without charge. Section 7 provides for the Short Title and the commencement of its provisions. The establishment date of the insurance scheme will be set by regulation, which I intend to enact 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 — in the negotiations that preceded the Bill and thank them for their co-operation. The insurance scheme was developed following lengthy discussions between my officials and the support groups and I appreciate their patience with this process. As this is a unique scheme, it was important to establish in the first instance that this model of providing for the insurance needs of eligible persons with hepatitis C and HIV was feasible and, in the second instance, that it was equally important to reach agreement on the parameters of the scheme and get the detail right.

For legal reasons, neither I nor my officials were able to enter into discussion with the support groups on the contents of the other sections of the Bill before the publication date of 20 June last. While I regret that this was the position, the Government is obliged to act in the public interest despite coming under considerable pressure to adopt a different course of action. Following the debate on these sections of the Bill last week, it is clear that there remains a significant difference of opinion in relation to sections 1, 2 and 6, which address the issues of diagnosis and loss of consortium. However, I am convinced that the provisions of the Bill are both necessary and proportionate. Given the difficulties that have arisen from a lack of clarity around the definition of hepatitis C in particular, it would be remiss of me to put a third scheme in place that perpetuated rather than corrected these difficulties.

On the positive side it should not be forgotten that the discussions between my officials and the support groups have resulted in virtual unanimity on the question of insurance. A number of amendments to the insurance elements of the scheme were suggested by the support groups and were taken into account on Committee Stage in the Dáil. I am confident that at the end of this process, a statutory framework will be in place for a viable insurance scheme which, at long last, will enable the 1,700 people with hepatitis C or HIV to avail of insurance products in a fair and equitable manner. My Department will engage with the support groups to discuss 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. I have instructed my officials that the completion of this process and the appointment of the administrator for the scheme should be given priority and completed within a three to six months' 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 the scheme will proceed as soon as possible.

I commend the Bill to the House and urge members to support this substantial initiative, so that the necessary arrangements can be made to make the scheme available to those who need mortgage and life assurance as quickly as possible.