I thank the Minister of State for coming to the House to address this matter. I wish to give Senator Henry one minute of my time.
Adjournment Matters. - Hepatitis C Testing Programme.
Acting Chairman
Is that agreed? Agreed.
Hundreds of women all over Ireland are now enduring the horrible reality and fear of last month's hepatitis C scare. These are the unfortunate women who have tested positive to hepatitis C following the major testing programme launched by the Blood Transfusion Service Board on 21 February. They must now wait another three to four weeks to find out if they harbour the virus and could be hepatitis C carriers.
Two months ago these women thought little or nothing of the anti D treatment which they received following their pregnancy. It was to them a life saving treatment which could prevent blood mismatching in any future pregnancy. Now, however, they are facing a totally different reality. At best, being hepatitis C antibody positive means a lifetime of testing. Damage may already have been caused to their liver and they could face an altered lifestyle.
The difficulty which many of these women are facing is that they do not know what are the chances of them having the hepatitis C virus. An article in The Irish Times on 11 March stated that up to 80 per cent of women who show up antibody positive for hepatitis C as a result of having received anti-D may actually have the virus, according to Dr. Mark Kane of the World Health Organisation. The Blood Transfusion Service Board said that the international statistics may be unreliable when we are dealing with a very specific group of women, as in this case when we are only dealing with women who received anti-D. However, Dr. Joan Power of the Blood Transfusion Service Board confirmed that the vast majority of those who showed up antibody positive would have the hepatitis C virus and that she had been advising women of this fact.
I would like the Minister to confirm if those figures are true. I realise that there are difficulties because many of the results of the PCR tests have not yet come back to the Blood Transfusion Service Board so they probably do not have accurate figures. However, what is very frightening is that one-fifth of the women who do test positive for the hepatitis C virus would expect to get cirrhosis of the liver and one-sixth of them could develop cancer. Those figures are frightening and I can understand the fear of these women.
Many of these women currently feel very well but that is no consolation to them. Hepatitis C is asymptomatic and their current health cannot adequately be assessed without the PCR test or liver biopsies. The Blood Transfusion Board, in the information it sent out to GPs, said that infection with the hepatitis C virus may lead to over-clinical hepatitis but more usually it is asymptomatic; more than 50 per cent of those infected are at risk of developing chronic hepatitis after a symptom free interval of 12 to 20 years.
For the many women who in the coming weeks will test positive for the virus, the reality of last month's media hype is now sinking home for themselves and their families. However, they feel they are being met with total silence about important issues, such as how their medical and future care needs will be met and who will fund the programme. When the Minister spoke in this House on 23 February he said that all costs would be funded by the Department of Health. The Minister and the Government need to give clear statements on all aspects of this case.
Details are needed on how many women have tested positive to hepatitis C every year and not just 1977 because it now appears that the problem may be much larger than we were led to believe. Initial Blood Transfusion Service Board letters to GPs concentrated on testing women who received the anti-D in 1977 and stated that women who received the anti-D in other years may be tested. However, there was an advertisement in last Monday's newspapers which seemed to indicate they now felt that the issue was much broader and the board was urging any women who are rhesus negative and were pregnant during the period 1970 to 1994 to come forward.
Have the initial ELISA and REBA screening tests shown the existence of a far greater problem? This may have serious health implications for the nation. Will the Minister for Health indicate clearly that free testing and, if necessary, free medical care will be available to partners and children of these women? Women who in the coming weeks will test positive for the virus face a frightening scenario. Their quality of life and life expectation may be affected by a virus which they acquired in a no fault situation. Many will harbour the virus for years without developing serious illness, but others will develop cirrhosis and even cancer.
There is no medical treatment available for the hepatitis C virus that offers real hope to these women. The Blood Transfusion Service Board said that Alpha Interferon treatment is expected to have a response rate of 66 per cent. However, half this group may relapse and require maintenance therapy. I accept that hepatitis C was only discovered in 1989 and as a result the general picture is very clouded. State funding is urgently needed for research into treatment. Dr. Joan Power of the Blood Transfusion Service Board said that treatment rates could be much better as some evidence indicates that early treatment gives better results and that patient response depends on how damaged the liver is. Obviously, if it was picked up early the results could be much better.
The area is very clouded. The blood transfusion board in its letters to doctors said that highly effective treatment for hepatitis C is still lacking and we have a long way to go before we are able to accurately identify those individuals whose hepatitis C infection will cause serious liver damage. Our present rate of knowledge suggests that for many of these women their hepatitis C infection will not threaten their survival, but the provision of full information and counselling is of vital importance to allay unnecessary fears and help patients form realistic expectations about their infection and its management.
The Minister for Health must state clearly how his Department intends to handle the care of women who test positive for the hepatitis C antibody and virus. Will biopsies be available to women who test antibody positive to determine the effect of hepatitis C on their livers? Will Alpha Interferon treatment be available to all women who require it regardless of the cost? Who will fund this? Will funding for this major health programme be provided by the Department of Health, the Blood Transfusion Service Board or the individual health boards? Will the Minister guarantee that free treatment will be available to the partners and children?
It is only women who are affected by this current problem. The Blood Transfusion Service Board has not issued any clear guidelines to these women on any risks associated with becoming pregnant. This is a major deficiency in the advice being offered because the board has stated that intrafamiliar, sexual and vertical spread from mother to baby appears low, but there is some risk and breast feeding may also be associated with vertical transmission.
An Leas-Chathaoirleach
I understand the Senator is sharing time with Senator Henry.
I will finish. It is time for clear answers and policy statements on these matters. The hundreds of women throughout Ireland who placed their trust in the blood transfusion service deserve honesty and information on what the future holds for them.
I thank Senator Honan for giving me this time. I strongly support what Senator Honan is saying. She speaks with her third hat on here, not as an accountant or a Senator but as a general practitioner's wife. I have been extremely alarmed by the confusion that seems to exist in some patients. She is right to highlight this. It is absolutely essential that the Minister ensures the Irish College of General Practitioners is as closely involved as possible in what is being done. They are being approached by more patients than the units set up by the Blood Transfusion Service Board and they must be involved. Proper procedures have been put in place but the knowledge does not seem to be filtering through to general practitioners who are being asked questions by patients which they cannot answer. This is extremely serious.
This unfortunate episode brings to light the fact that only two-thirds of the cards of patients who were given anti-D in the last 20 years were returned to the Blood Transfusion Service Board. There certainly has to be a tightening up on that because if all the cards had been returned tracing people would not have presented a problem. We have had to have a massive publicity campaign because of that, so I hope the Blood Transfusion Service Board will look into that in the future. I compliment Senator Honan on bringing up this topic.
I apologise for the Minister for Health who would like to have been here but had to attend a memorial service for a member of his staff who died recently. I thank Senator Honan for raising this matter on the Adjournment today. Like her, we do not want to raise unnecessary fears but we want to give necessary information and allay fear.
I welcome the opportunity to inform Senators about the programme being undertaken to provide treatment for the women who have tested positive under the screening programme undertaken by the Blood Transfusion Service Board. I have been informed by the Blood Transfusion Service Board that almost 44,000 women have been screened for hepatitis C antibodies and the number who have tested positive is 827, up to and including 25 March 1994. I am aware of the article in The Irish Times to which Senator Honan referred which had a misleading headline suggesting that 80 per cent of those tested were positive. That is not case. The majority of those tested are in the clear. A further confirmatory test will be carried out on the blood samples given by these women and some may yet prove to be negative. I again urge all women who received anti-D immunoglobulin since 1970 up to 18 February 1994 to come forward for the screening test. This should be done in the interest of taking as many precautions as possible. We do not want anybody to fall through the net. We are not trying to scare people but trying to make sure that we catch everybody.
The Minister for Health has made arrangements for treatment of women who test positive for hepatitis C antibodies to be provided at the following hospitals: St. Vincent's Hospital, Dublin, the Mater Hospital, Dublin, Beaumount Hospital, Dublin, St. James's Hospital, Dublin, Cork Regional Hospital and University College Hospital, Galway. The following arrangements will be put in place for these women. Each patient will be seen at a consultant staffed clinic within two weeks of referral. Clinics will be staffed by experienced staff who will ensure that a high quality service sensitive to the needs of patients is provided. A range of diagnostic tests designed to identify liver damage will be provided. Any further treatment prescribed by the clinician will be provided. I cannot at this stage specify what that treatment is going to be as that will depend on the clinical judgment of the people concerned.
Any treatment that is necessary will be provided. The treatment will initially involve out patient visits which may be followed by a short admission for clinical investigation and follow-up treatment if required. As the Minister has already informed the Seanad, treatment will be provided for these women by the public hospital service free of charge. That is one of the points the Senator made; it will be free of charge. The Minister is providing the necessary additional resources to the hospitals involved to enable them to provide the highest possible standard of care for this group of women. A number of detailed important points were raised in the two contributions and I will bring them to the attention of the Minister for Health.
I thank the Minister of State for her reply. I welcome what she has outlined here today because these women want information and having this information available to them is very helpful. I ask her to specifically bring to the Minister's attention the issue of women who might become pregnant in the future and the need to explain any effects to them. That is very important.