Mary Harney (Dublin Mid West, Progressive Democrats)

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.

See this speech in context