Ivor Callely (Dublin North Central, Fianna Fail)

I am grateful for the opportunity to speak on this Bill. I offer my congratulations to the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive on their excellent work in representing their members and keeping this issue to the fore over many years. I understand that the Bill will establish a statutory scheme to address the insurance difficulties experienced by persons infected with hepatitis C and HIV through blood products administered by the State.

Unfortunately, most people in this country are familiar with hepatitis C because of the many thousands of unfortunate people infected following the administration of contaminated blood and blood products through the Irish Blood Transfusion Board.

We understand that hepatitis C can vary in severity. A person can suffer from acute hepatitis C, where there is a rapid onset of the disease, or chronic hepatitis C, where the onset is gradual but will be of long duration. The main means of contracting hepatitis C is through contaminated blood, which is how the people we are discussing were infected. The disease can also be passed from mother to baby.

The real tragedy of hepatitis C and HIV lies in the fact that there is no vaccine or cure for them at the moment. Those affected must live out their lives in the shadow of chronic diseases and are likely to require long-term medical care. The Bill addresses three elements in an attempt to alleviate hardship. These elements are compensation, the special health card and life assurance support. I understand that adequate funding for the scheme will be made available by the Exchequer for approximately 30 years.

The supports currently available to those infected consist of the hepatitis C and HIV compensation tribunal and the Health (Amendment) Act, which provides for a range of free health care services. The compensation tribunal was established in 1995 to compensate those infected and became a statutory body with the enactment of the Hepatitis C Compensation Tribunal Acts of 1997 and 2002, which make provision for compensation to those infected by HIV as a result of receiving a relevant blood product. I understand that the State has already paid out over €250 million in compensation to over 1,300 women infected with hepatitis C and that the final payment is expected to top €500 million.

However, these are mere figures which cannot calculate the devastation caused to these women and their families following their infection. The Health (Amendment) Act Card entitles those affected to general practitioner, nursing and home help services, as well as counselling services for them and their families, regardless of income. Prescribed drugs, medicines and medical and surgical aids and appliances are also available. Those affected are entitled to these services for life.

There is no suggestion that any amount of money, the required supports or services to which I just referred or any other form of compensation can ever make up for the suffering inflicted on those people who were infected with HIV or hepatitis C because they received contaminated blood or blood products from this State. It is hoped that this Bill, while long overdue, has the potential to provide the necessary answers and supports sought by sufferers and the relevant advocacy groups.

The inability of sufferers to buy life assurance, mortgage protection policies or travel insurance has added to the hardship experienced by them and their families. This issue of insurance was highlighted by advocacy groups and the consultative council on hepatitis C as far back as 1997. The Department of Health and Children initially sought advice from the insurance industry, while also consulting with advocacy groups on solutions to the problem. I understand that there are two separate issues for people with hepatitis C and HIV regarding insurance. Certain people can only obtain insurance with increased premiums, while others are deemed uninsurable by the insurance industry. The Government has proposed to deal with the problem by paying the additional risk premium where the insurance provider is willing to provide cover, subject to an additional premium. Where no assurance is available, the State will assume the risk on the life cover. In each case, the person requiring insurance will pay the average basic premium which an uninfected person of the same age and gender would pay. This effectively evens the playing field for those with hepatitis C and HIV.

It is a matter of grave concern that groups representing haemophiliacs infected with hepatitis C and HIV through State-administered contaminated blood products are not completely happy with the content of this Bill. Before I entered the Dáil at 5.36 p.m., I received a memorandum from one of the advocacy groups which makes three points. The first is that in its communications over several years, the group always believed that this Bill would be stand-alone legislation and that there was never any question of linking it to any other scheme or mechanism. The group argues that the changes mean some of its members and some members of other advocacy groups will be disenfranchised and prevented from taking part in the compensation scheme. The group's second point is that subsections (a) and (b) of section 1 and sections 2 and 6 should be deleted and that if this were done, all the advocacy groups would endorse the Bill. The group's third point is that the advocacy groups are happy to engage in discussions with the Department to address any changes that may be required to the hepatitis C compensation scheme.

I am known as a person who likes to deliver, achieve results and ensure that measures are all-inclusive. I am surprised that we have travelled this road and are in possession of this legislation but are still receiving communications of this nature at this late stage from people who honestly and in good faith engaged in discussions to achieve satisfactory results but who are not satisfied with the legislation at the eleventh or twelfth hour. This situation is completely unsatisfactory. I urge the Minister to give due consideration to the concerns set out in the fax I received and other concerns voiced by groups representing those who have been infected. They have waited long enough for their needs to be met. They were infected because of errors in the use of blood products by State agencies. I am surprised we find ourselves in this situation. We should do all we can to address their concerns.

I understand that the Irish Haemophilia Society, the Irish Kidney Association, Positive Action and Transfusion Positive all oppose the Bill, which introduces a new scientific definition for hepatitis C that is used in other jurisdictions. Such a definition can be used but we should also examine the situation in this jurisdiction and work with these groups to secure agreement. The Bill specifies that the person has not been diagnosed positive for hepatitis C for the purposes of the Act unless the diagnosis is based on a positive ELISA test or if the person has displayed symptoms of acute infection such as jaundice or raised ALT levels within 16 weeks after the administration of the anti-D blood product. The advocacy groups contend that this definition will exclude a number of haemophiliacs who were treated with infected blood and who have displayed medical symptoms of hepatitis C but who have as yet not tested positive for the disease. I understand that the advocacy groups are also critical of an amendment to the Hepatitis C Compensation Tribunal Act 2002 which restricts the entitlement of some spouses and partners of hepatitis C sufferers to claim compensation.

This Bill is designed to acknowledge the rights and meet the entitlements of those who contracted hepatitis C and HIV from blood products provide by the State. If the Bill is not effective in doing so, we must re-examine its content. I believe that amendments will be made to this Bill before it is enacted. While I acknowledge that the provisions in the Bill regarding the definition of hepatitis C bring Ireland in line with other jurisdictions where compensation schemes operate, we as public representatives must be satisfied that we have done all we can to deal adequately with the consequences of the infection of people through State-administered blood products. Those who contracted hepatitis C and HIV as a result of contaminated blood products have a basic entitlement to life assurance and mortgage and travel insurance in line with the rest of the population. It is not acceptable that they are discriminated against because of their health problems and it is up to the Government and the House to ensure they are treated equitably and with dignity. This means that those who were infected should be able to obtain insurance cover in line with the rest of the populace.

This is an urgent matter and those who were infected should not find themselves in this position or wait any longer. We must ensure that the Bill addresses all their concerns. I earnestly ask the House to unite and ensure the passage of appropriate legislation. It is my understanding that the people involved in the discussions, particularly the advocacy groups, clearly put forward their case during the months and years preceding the Bill's introduction to the House. Most Deputies are anxious to ensure that their desires are met. Therefore, I do not understand why we cannot proceed in the most appropriate fashion to get the best result for the people seeking our support and assistance on this issue. I look forward to the developments that will hopefully take place on this proposal during the coming hours.

See this speech in context