Health (Screening Programmes) Amendment Bill

I am pleased to be speaking in the interrupted debate on the first reading of the Health (Screening Programmes) Amendment Bill. It has certainly been interrupted—from May 2002. So it is quite difficult picking up on these bills again. This bill is a direct result of the Gisborne inquiry that occurred in April 2001. The inquiry very clearly concluded that by far the most important stage required to make the National Cervical-screening Programme fully effective, is the removal of legal barriers that are preventing the comprehensive evaluation of the programme from proceeding. The removal of those legal barriers was definitely what we looked at and moved very quickly on, by way of this bill.

The National Cervical-screening Programme began in 1990, as a direct result of an area health board approach to population health-based planning. It was a very extensive programme, which I was very aware of, in the Bay of Plenty. It was all about setting up a programme register that recorded laboratory tests and smears from colposcopy findings, and held all recordings from laboratories, hospitals, and cancer registers. The point of this bill, which very clearly arose from the Gisborne inquiry, is that we really need to make sure that women are informed about what happens to their cervical-screening results, their actual smears, their cell samples, and any subsequent follow-up and treatment. It did set up the cancer register for cervical-screening. The point is that all women are automatically enrolled on the screening programme—that is, all their results. We do want women to have the right to opt off any screening register. If they opt off, then all that is left behind is minimal contact details, so that we can follow up those women.

The purpose of a screening register is that, one day, it can be extended to cover other health issues. This matter was certainly raised during the Parry inquiry that I was on, but at this time the Government has no plans to extend the cancer cervical-screening register to other conditions. However, at that stage in the Parry inquiry, Phillida Bunkle consistently supported the establishment of a general and comprehensive national cancer register.

The screening programme was very innovative when it was first established. It was part of a Labour-led initiative, following on from population-based programmes that were set up by area health boards. It looked at health promotion, smear taking, the purpose of taking biopsies, and the management—that was the important thing—of abnormal smears. We need to be reminded that 220 to 240 women suffer from cancer of the cervix each year. The major issue for us is that of informed consent with the practitioner, and that is addressed in the bill. When a woman decides that she needs a smear taken, by her general practitioner, her midwife, or a practice nurse—in fact, there are 5,500 smear-takers—it is very important that the smear-taker informs the woman about what will happen with the results of her smear, and that she will be part of a large population-based programme. Those programmes will only ever be effective if we have really high levels of enrolment, and coverage over a wide area.

Then we need to ensure that we have really high-quality screening and very, very good follow-up services. The ultimate aim is to have regular evaluation of the programme to make sure that it is happening, as we envisaged it would. Forty-six recommendations came out of the Gisborne inquiry. Annette King had also enlisted the services of Dr Euphemia McGoogan to review the evaluation of how well those recommendations were being implemented. At the same time a Ministry of Health audit was looking at the histories of about 350 women with invasive cervical cancer, from January 2000 to September 2001.

When we look at the statistics of this disease it is very important to note that cancer of the cervix is one of the most preventable forms of all cancers, and 90 percent of cases of common cervical cancer are preventable, if detected at an early stage and then treated appropriately. In the 10 years from 1987 until 1997, cervical cancer rates dropped by 39 percent, but the number of deaths dropped by 44 percent. The programme itself has gone through substantial improvements over the last 3 years, as a result of various inquiries and, also, the Ministry of Health’s approach to continuous quality improvement, but several more steps need to be undertaken.

In conclusion, I urge that we cannot continue to watch the numbers of women who develop cancer of the cervix each year, and do nothing more about it. The whole rationale for the Gisborne inquiry, the Parry inquiry, and the Ministry of Health inquiry, has to have been to improve the programmes that we currently have in place. Further steps are needed to back up the programme, and we are undertaking those with the support of the ministry. This bill will be another step along the way to ensuring that we can treat the disease early, that women are well informed about what happens with their health record, and that practitioners in the field, researchers, and evaluators can access records and make sure that treatment is the very best that New Zealand can offer those women. We need to make really sure that all women understand that they are automatically enrolled in the cervical screening programme, that they do have the right to opt off with minimal contact being left on the register, and that, under the provisions of this bill, external researchers and evaluators will have access to the records, to make sure that the programme, which should be comprehensive, is being undertaken. Therefore, I support the referral of this bill to the Health Committee.

I am pleased to speak to the Health (Screening Programmes) Amendment Bill. New Zealand First will support the referral of the bill to the select committee. It is a very worthy bill and it is long overdue. It is of particular interest to the members of New Zealand First, as we, like many other New Zealanders, have experienced and know of women and their families who have suffered and are suffering from this tragic cancer. We will be very interested to hear from the various submitters on this bill, and to work through the submissions. As we heard from the previous speakers, cervical cancer is one of the more common cancers suffered by women, and all the research indicates that if the disease is detected early enough, many cases are curable.

The devastating effects of the disease upon women and their families are tragic. New Zealand First believes that the operation of the National Cervical-screening Programme, and other programmes to which this bill may be later extended, is absolutely essential for the health monitoring of all—at this stage, female—New Zealanders. We are pleased to note in the bill that the system will be set up so that it can be extended. New Zealand First would like to see those screening programmes extended at some later date to include, for example, prostate cancer, hepatitis B, asthma, diabetes, and osteoporosis. We believe that it is in the best interests of all New Zealanders that the screening programmes are extended to include those diseases, and perhaps even more, at some later date.

This legislation, with its monitoring and auditing of practices and results, should assist in the elimination of the chronic under-reporting that we saw in the Gisborne region, and of the misdiagnoses that came to light in the Northland area. At this time, tragically, those publicised incidents cannot be considered to be isolated cases. That is totally wrong for our health system. We cannot afford to have misdiagnosis and under-reporting slipping through cracks in the system, as has happened in the past. We need to learn from the mistakes of the past and not repeat them. This bill, with its evaluation and auditing provisions, should address that aspect.

Early detection of problems is the best way to detect precancerous conditions that can often be treated before cancer develops. It is to be hoped there are sufficient numbers of fully trained staff available in New Zealand to provide that service, and, if not, that a systematic strategy has been developed to address the shortfall. I know that the Minister has commented before on addressing that in the House, but the bottom line is that we, the people of New Zealand, do not want to have to be dependent on Australia, or to have to travel to Australia to take advantage of any screening programme. A high-quality screening assessment and treatment programme to reduce the incidence and mortality rate of cervical cancer is essential in New Zealand.

The creation of a register to enhance screening programmes will be beneficial to New Zealand women. However, the Ministry of Health must put safeguards on its use, as records of that nature are confidential, and the system used must be fully explained to the public and the women of New Zealand. Already, I have read news items on that very point. We in New Zealand First believe that clinical records only should be noted in a register such as that, and that no other general personal or medical information that relates to the individual should be included in the register. It will be absolutely critical to ensure that the confidentiality of the register is maintained, and that safeguards are put on its use. The bill will evaluate the procedures and results against predetermined standards, and will then enforce those standards, which is a giant leap forward from what is presently in place.

The number of people participating in the programme is also an indication of the effectiveness of any programme—in this case, the percentage of women in the target age group who have participated in the screening process on an annual basis. If increased participation rates in the programme can be achieved, a reduction in the death rates in the long term will then be possible, because it is then, and only then, that this programme will be considered to be successful. That means that promotion of programmes outlining the benefits of screening must be systematically planned on a national basis. Living with a serious disease is not easy. Cancer patients, their families, and those who care for them, face many problems, and many, many challenges. The bottom line is that early detection, followed by timely effective treatment, is essential for a reduction in the mortality rate to occur. Everybody in New Zealand deserves access to the best and most accurate testing methods available, so that they can make the most appropriate health-care decisions. With promotional education programmes and regular screening, hopefully many cases of cervical cancer should be detected in the very early stages.

It is important for the well-being of the health of New Zealand that this bill proceeds. In reality, the problem affects every New Zealander. Providing people with certainty about their health care, and ensuring timely access to quality services, is absolutely essential. New Zealand First supports the referral of this bill to the select committee.

United Future believes that the National Cervical-screening Programme and legislation relating to it are incredibly important, and contribute to the well-being of women between the ages of 20 and 70. United Future members recognise the need to ensure that the programmes are serviced at the highest, most accurate, and efficient manner, in order to help both research and the women who undertake the screening process.

United Future acknowledges the aim of this amendment bill as being to assist in increasing the quality of the operation and evaluation of the National Cervical-screening Programme in New Zealand. We see the legislation as doing that because it will appoint a nationally organised screening programme that will enable information to be accessed by operators and evaluators, and its provisions will be able to be extended to other screening programmes, which is a very far-sighted inclusion in the bill.

United Future supports the basic principle of the bill, which will address previous instances where the screening programme has failed, due in part to a lack of routine evaluation, as in the case of Dr Bottrill, and the subsequent findings of the Cull report. We acknowledge that much personal tragedy instigated the inquiry that has resulted in this bill. We note that the bill asks for an increase in research data, for the well-being of all women in New Zealand, now and in the future. We also note the request that research data be more readily accessible within the research and evaluation team, and that as a consequence, in some instances women will have their cervical data used without prior approval. We have been assured that that will not be the norm, but we will demand that privacy for women is paramount to this legislation, and that data is accessed without prior consent only when there is no alternative. We would like to discuss further the processes involved with the reasonable attempts to seek consent from women for their results. We will be seeking to have this assurance detailed in the legislation. However, we support the move to utilise all data available for the greater good of research and agree that the time and resources spent seeking consent may be better utilised.

We would like to discuss further the privacy issue and the consent of information being released for research in the select committee. We understand the reasoning for the director-general having some discretion to release and work with data without the consent of every woman, but we believe that this is a contentious issue and will seek further clarification and detail to ensure that all the rights are reserved. In supporting the national screening programme amendments, we will be making every attempt to make sure that women are given every opportunity to have an absolute understanding of their rights and/or of the processes of the bill at the initial appointment made with the doctor. United Future will be looking closely at the way in which the implementation of the register is designed, particularly at the way in which the manager will enforce and consent on information that is to be accessed by and shared amongst evaluators. United Future would like to understand further the selection of evaluators and the training that will be involved to ensure that the standards are nationally upheld. We understand that incomplete screening history impedes on the comprehensive evaluation of screening programmes. However, we consider that the right to opt off is an imperative right for women. We believe that the screening programme needs to continue to advocate the benefits of having longitudinal results, but we appreciate women’s rights to choose. We would like to look further into how data may be collected for those women who want to opt off. We believe that there is an opportunity to collect information about women who opt off as a qualitative longitudinal study that may show regional, ethnic, and age brackets that may be used as an evaluation to the success of the screening programme.

We are also interested in the protection of Māori women by the kaitiaki group. We would like more information on how Māori protect and treat screening data appropriately. Is this aggregate data, or data on an individual level? In what situations are they reliant to provide data for cervical-screening data analysis process? What if Māori women who identify themselves as Māori in health screening forms want to be included in the national screening programmes? Do they have the choice, or are all Māori women automatically under the auspices and the control of the kaitiaki group? We would like to discuss further how research is often used to marginalise Māori women, as quoted by the Ministry of Māori health manager, Teresa Wall, in the Daily News on 4 April 2002. For the comprehensive development of health research and for the increased well-being of all women in New Zealand now and in the future, United Future strongly supports the bill going to the select committee.

The Government tells us that the aim of the bill is to assist the operation and evaluation of the national cervical-screening programme. The bill also addresses the extension of these provisions to other screening programmes. The aim of screening programmes is, of course, to detect abnormalities early, so that they can be referred for treatment early. It is informative, therefore, to look at the number of cases of cervical cancer diagnosed over time, and also at the mortality rate. International comparisons are also useful. In 1995 New Zealand had the second highest rate of death due to cervical cancer of the OECD countries—a rate of 4.2 deaths per 100,000 of population. From 1989 to 1998, the mortality rate for cervical cancer decreased within New Zealand by 27.5 percent. There may be many reasons for that—among them, perhaps, the introduction of the Cancer Registry Act of 1993 under the then National Government. The World Health Organization has the following to say about cervical screening: “Screening, with adequate follow-up therapy, can achieve major reductions in both incidence and mortality rates.” ACT New Zealand will therefore support this bill at its first reading, but we have grave reservations about many of its provisions. I will go on to point those out.

Much concern has been expressed recently about the quality of health screening programmes in New Zealand—cervical screening in particular. This bill addresses the political concerns but not the issues behind the failure of the current screening programme. The current programme was set up because of a need to be seen doing something about cervical cancer, but international guidelines were ignored, experts within New Zealand were not consulted, and, most important, there was no adequate system of quality control. Those failings were brought to attention with the report from the Gisborne cervical-screening inquiry and the recent inquiry. The current bill is a response to the Gisborne inquiry, but it risks creating another political response to a medical problem. Once again, the desire to be seen to be doing something overtakes more practical considerations.

The first point to make is that there is a moral hazard in having one organisation both provide and evaluate a service. Under the provisions of this bill, the Ministry of Health could be charged with producing a New Zealand cervical cancer register, running the register itself, and being responsible for evaluating the process. There would appear to me to be a conflict of interest. It would be better to have a contract with an independent organisation to provide a screening programme, and a separate contract with a separate organisation to audit the programme.

I appreciate that the Government might find it unpalatable to deal with a profit-making organisation, even if it were to provide an excellent service. We in ACT do not have that philosophical handicap, and believe firmly that such a contract should go to those able to provide the best quality service for the best price. However, there are organisations that this Government could well do business with—for example, university departments with the relevant expertise. My point is that the Ministry of Health does have a conflict of interest. Human nature being what it is, people have a high opinion of their own work. For a national screening programme to be successful, that matter must be addressed.

There is little doubt that the present screening programme has been inadequate. Quality control was of major concern in the Gisborne inquiry. One could well ask, where was the quality control? Why was Dr Bottrill’s under-reporting not picked up earlier? He was, after all, participating in the national cervical-screening programme. Was the current screening programme working effectively anywhere in the country? I know from my own experience as a participant in the programme that it has been woefully inadequate. I recently received my recall notice—2 years late.

Although this Government has released a series of statements describing action on the recommendations of the Gisborne inquiry, it has ignored the criticisms made of the Ministry of Health by that inquiry. Many of those criticisms were very sharp. Let me quote: “During the first session of the committee’s public hearings, it was advised that Professor David Skegg from the University of Otago was attempting to carry out a cancer audit of all the cases of cervical cancer from the Gisborne region. At that time, Professor Skegg thought that was the best way to determine whether there had been an unacceptable level of under-reporting in the region. A cancer audit would also have revealed any errors in the reporting of other laboratories. However, the cancer audit could not proceed, as Professor Skegg was unable to gain access to the information he needed to carry out the audit.”

The ministerial inquiry into the under-reporting of cervical-smear abnormalities in the Gisborne region concluded that an audit of cases of cervical cancer was the best way of measuring the effectiveness of a cervical-screening programme. In fact, I would go so far as to say that there is no point in having a screening programme if the results cannot be evaluated. That would mean having all the cost with none of the benefit.

However, within the community there are widely ranging opinions about the process of audit—in particular, with the issue of consent. In the 25 January 2002 edition of the New Zealand Medical Association journal, Associate Professor Charlotte Paul of the University of Otago Medical School made the following comments: “It is disturbing to see now that the Government has ignored both the letter and the spirit of the advice of the Gisborne ministerial inquiry. Indeed, it has made a decision which flies in the face of that advice—that ready access to medical files for audit must be permitted. The Cabinet decision released on 3 October 2001 now requires that consent must be sought from women with cervical cancer to assess their medical files for audit, and the consent of their next of kin must be sought if they have died.” She goes on to say: “Cervical screening will now become the most difficult service to audit.”

However, the Federation of Women’s Health Councils has criticised the new bill for leaving the way open for auditors and evaluators to access hospital records without women’s consent. The bill addresses enrolment on the national register by having an opt-off policy as opposed to the current opt-on policy. That emphasis has wide-ranging implications for women’s rights. The legislation must ensure that each individual has the necessary information to allow her to participate in the programme, or, if she so wishes, not participate.

I hasten to add that there is reason to be cautiously optimistic about cancer of the cervix. The rate of new cancers has fallen during the last 10 years for which full figures are available. The rate has fallen by about one-third, which is extremely encouraging, and suggests that the current process of screening intervention may be producing results. The question we have to ask is will that process be aided or retarded by a national register run by the ministry? It is quite possible to leave individual doctors to take action on their own account, and it would be better to do that than to have a poorly run national screening programme. A badly run programme would generate conflict and create uncertainty as to where responsibilities lie.

ACT New Zealand supports the passage of this bill to the select committee stage, but we will be pushing for independent audit and scientifically based evaluation. We remain unconvinced that the Ministry of Health is the appropriate organisation to run this programme. We also want to see a complete resolution of the issues regarding privacy. To embark without a clear understanding on privacy issues risks the creation of a programme that generates cost but cannot progress because nobody is allowed to talk to anyone else.

I am pleased to speak in support of the bill, which, as members have said, comes as a direct result of the Gisborne inquiry. The Gisborne inquiry was called for by the former Minister of Health the Rt Hon Wyatt Creech, when he was deputy leader of the National Party. Following the change of Government, the inquiry reported back to the Hon Annette King, focusing on what happened in Gisborne through the 1990s up to the point where Dr Bottrill retired from practice. The inquiry came up with 46 recommendations for the Minister of Health to consider, and this Minister has worked through many of those recommendations, trying to get as many through as possible. The bill we are debating today contains a number of those recommendations. The bill is needed to enable improved evaluation of the screening programme, and it is clear from the outcome of the inquiry that that needed to happen.

I will pick up on Mrs Roy’s comment that the Government is rushing to make it look as though it is doing something and has not consulted enough people. I note in the explanatory note of the bill that a public discussion document was released, and that there were 101 submissions on it from key stakeholders and members of the public. Consultation was undertaken with various Government departments and agencies, and selected professional and women’s groups—that last part is very important, as well. Those stakeholders were part of the process that has led to this bill taking place. It will go to the Health Committee, so if the ACT party does not believe that there are enough privacy safeguards in the bill, I hope it will come up with very concrete, detailed suggestions for the select committee process, so that we can make sure we progress the bill and deliver on the spirit and recommendations of the Gisborne inquiry.

I am proud that Annette King is taking a very sensible approach to getting this inquiry through. I support the bill.

The Green Party will support this bill going to the Health Committee. We, too, consider that, although it is a technical bill, it is an important bill. It addresses some of the extremely serious flaws in the operation of the cervical-screening programme, which the Gisborne inquiry identified. It also seeks to remove the legal barriers that prevent the comprehensive evaluation of the screening programme from proceeding—which, after all, was one of the major focuses of the Gisborne inquiry.

We strongly support the move to restore confidence and to strengthen the national cervical-screening programme. We support the objectives of the screening programme and its focus on continuous quality improvement. We very much support the fact that the bill obliges health practitioners to provide information to women about the risks and benefits of participating in the programme, and that it gives women the option of opting off the screening register.

We support the provisions that allow for the comprehensive and full evaluation and monitoring of the programme, because without proper, timely monitoring and evaluation we cannot have confidence in the national register. As the previous speaker suggested, there is obviously no point in having a national register if we are not sure that we can be totally confident in it. In that regard, we are extremely concerned that the evaluation of the national screening programme has still not been completed. It is worth reminding ourselves that, until the evaluation of the programme has been completed, there is no way of knowing whether the programme is safe for all women, or whether there is, or has been, systematic under-reporting of abnormalities in laboratories in other parts of New Zealand.

The delay in evaluating the programme, which has been commented on by the independent auditor and others, calls into question the value and purpose of the entire national cervical-screening programme. What is the purpose of women having regular smears if they cannot have confidence in the screening programme, and if they have no idea at the end of the day whether their smears have been accurately read?

One of the themes of the Gisborne inquiry was the failure of the Minister of Health over a period of 10 years to monitor and evaluate the national screening programme. The truth is that, had it been properly monitored, the problems at the Gisborne laboratory undoubtedly would have been identified earlier. Some researchers have estimated that proper monitoring would have saved at least 10 deaths a year. The Green Party gives extremely high priority to finally completing the audit, and to making changes that are needed to allow for the comprehensive evaluation of the national screening programme.

Having said that, this bill does raise complex issues of privacy and consent, as previous speakers have said. A key issue raised in the inquiry, and subsequent to it, was whether outside researchers can get access to information from the screening register that could identify individual women. The uncertainty about that question has prevented researchers from assessing how many women are getting cervical cancer, despite the fact that they have been screened.

The question of how much health information evaluators should have access to as of right is a complex issue. On the one hand, it is essential that health information evaluators have access to the information they need to properly evaluate the programme, but, on the other hand, women do have a right to total privacy. Indeed, the New Zealand Bill of Rights Act states that people have a right not to be experimented on, and the concept of experiments could arguably be extended to include accessing records, because researchers could conduct experiments on clinical test results.

We consider that the privacy issues are extremely important. Like New Zealand First, we want to see clinical records only on the register. We do not want to see any other general information. We have concerns about giving automatic access to hospital records relating to diagnosis and treatment, which is presently provided for in the bill, and to primary-care providers, where that access does not have the explicit consent of the women concerned. Those are contentious and important issues. We will be listening closely to submissions on those issues. We have concerns, too, that the provisions of the bill can be automatically extended to any other screening programme simply by the very secret procedure of an Order in Council. It is absolutely crucial that we get this bill right, and that we resolve those issues well.

We also have concerns that the director-general has discretion to release data, without the consent of women in some instances. We look forward to debating all of these issues in the select committee. We do have an open mind and will be listening carefully to the arguments, as other speakers have indicated they will, as well. We also have concerns about the Ministry of Health both running the programme and being the monitor and the evaluator.

While focusing on screening programmes, we must not lose sight of the wider issue that we are addressing here, which is the escalating rates of cancer in New Zealand. Despite the successes in reducing cervical cancer that have been referred to here, the stark fact is that we are not winning the war against cancer. Many cancers are still escalating at epidemic proportions. In fact, our statistics on cancer are nothing short of shocking. Deaths from cancer are increasing, relative to deaths from heart disease and strokes. New Zealand cancer rates have been increasing considerably faster than those of Canada, Australia, the UK, and the USA, etc. New Zealand women have the sixth-highest death rate from cancer out of 173 countries.

We will not bring down these horrifying statistics simply by focusing on detection and screening, important though these programmes are. The only way we will see these figures come down is when we start to focus on reducing the underlying causes of cancer through cancer prevention. The World Trade Organization acknowledges that 80 percent of cancers are environmentally related, so why are we not putting the same amount of energy and focus into reducing the environmental causes of cancer as we are into cancer detection and prevention? I would like to quote Professor Samuel Epstein, who has written many books and who is an expert on the whole politics of cancer, as he puts it. He said that the cancer establishment has been fixated on diagnosis and treatment, and is indifferent or ignorant of questions of prevention. They have grossly misled the public into believing we are winning the war against cancer, when nothing could be further from the truth. Cancer rates are escalating to epidemic proportions, and our ability to treat and cure cancer has not materially improved for decades for the majority of cancers. It is equally unarguable that our total environment, our air, food, water, and the workplace has been permeated with a wide range of industrial chemicals over the last four to five decades.

The good news is that the Government has finally brought out a draft cancer-control strategy. Further good news is that for one of the first times it actually touches on the issue of cancer prevention, which was, after all, one of the major recommendations of the Gisborne inquiry. However, despite this draft and despite all the talk and all the money that we spend on cancer detection and treatment, very little is being done in the area of cancer prevention except in one or two areas like reducing our exposure to the carcinogen of tobacco smoke.

We know that 80 percent of cancers are environmentally related, so what are we doing? Why are we not focusing on the fact that a raft of cancer-causing substances are being used in workplaces? Where is the strategy to reduce and eliminate workplace chemicals and carcinogens? Where is the acknowledgment even that pesticides are a major cause of cancer, and where is the strategy to reduce our exposure to them, or to dioxin—another known cause of cancer? This Government does not even have as an objective the elimination of the sources of dioxin in New Zealand. We know that at least 60 occupations have been identified overseas as posing an increased risk of cancer. Why are we in New Zealand not focusing on those high-risk occupations and protecting workers from cancer-causing substances in those occupations?

National supports this bill into the House. It is considerably concerning that the bill was last debated in October 2002. That suggests the Government is not being assiduous with many of the details that are important in relation to the issues of the day. Along with that is the fact that the 6-monthly audit report that was expected at least as long ago as that has not occurred. That is also a great worry.

There is no doubt that cervical cancer is a very significant cause of mortality in New Zealand for women, and that a well-run screening programme can save lives. It is estimated that something like one in 97 women in New Zealand can expect to develop cancer before the age of 75. An expert analysis has, indeed, shown that without an adequate screening programme there would be 340 new cases and 116 extra deaths a year. Since the screening programme began in New Zealand, cervical cancer deaths have fallen significantly. From 1987 to 1996 the incidence—that is, the number of new cases reported per year—has dropped by 22 percent and the death rate by 43 percent. However, cervical cancer morbidity and mortality trend rates can be very misleading. In fact, cancer rates were trending downwards in all developing countries prior to screening programmes having been initiated in the 1960s. That phenomenon has been confounded by the cohort of post-war babies who have sustained a higher rate of cervical cancer, for a variety of reasons.

This bill has laudatory objectives to achieve. They are the delivery of high-quality cervical screening and treatment services, the provision of information to women, and the facilitation of continuous quality improvement in the national cervical screening programme. However, there are warnings and lessons to be learnt. Because New Zealand has gone through substantial scandal and horror relating to cervical cancer, it is absolutely vital that the legislation surrounding cervical cancer screening is, indeed, made as good as possible. I was heartened when I spoke to Professor David Skegg some months ago to learn that he believes the major features of this bill are appropriate. However, probably one of the most important factors relating to the success of the scheme is its practical management by the ministry and by the Minister. While National supports and welcomes this bill going to the select committee, it is absolutely essential that it is well scrutinised. It is vital that submissions are carefully heard, and, if necessary, changes are made to the bill, particularly in the area of patients’ rights and informed consent.

Sadly, New Zealand history reveals that our own Ministry of Health has not run an ideal cervical cancer screening system from the very beginning in 1990. A leading question is whether it would be better to have an audit unit separated from the ministry. I think the speaker from ACT has asked that question also. Wherever the unit is, I say it must be under careful, transparent, and continuous monitoring.

Because of the controversy surrounding cervical cancer and its early detection it is important to go over some of the more recent landmarks that have occurred in New Zealand’s history. I quote from a relevant article in the New Zealand Herald that appeared on 7 November 2001. It stated that in 1998 “Judge Silvia Cartwright reports on the ‘unfortunate experiment’ in cervical cancer treatment at National Women’s Hospital … She recommends a national screening programme with a centralised register. The register would keep cytology … and histology … lab results together to ensure a reliable database.” However, in 1989 Health Minister Helen Clark set up the programme in 14 locations. Instead of following then Judge Silvia Cartwright’s recommendations, those locations were based on the then new area health boards. To quote the New Zealand Herald, “Because of the political haste to begin screening, cytology and histology results were not combined until 1996”, some 7 years later.

Between 1990 and 1994 it came to light that women who saw Gisborne pathologist Michael Bottrill for cervical smears—like many others seen by Dr Bottrill between 1990 and 1996—were told their smears were normal. It was not until 1999 that the tests showed Dr Bottrill might have missed 129 out of 150 slides with high-grade abnormalities for cervical cancer. Former Minister of Health, Wyatt Creech announced a ministerial inquiry. That inquiry took place in Gisborne between September 2000 and March 2001, and a separate report recommended the creation of one super-agency with a central database to deal with medical complaints.

The New Zealand Herald report went on to state that in April 2001 the “273-page Gisborne cervical cancer report blames both Dr Bottrill and the national cervical screening programme. It finds Dr Bottrill under-reported smear tests, but that the Ministry of Health had failed to design an effective programme for a decade, which allowed Dr Bottrill’s mistakes to go unchecked. The report says health officials need access to women’s medical records without their consent to check if other labs have under-reported smears. But it surprises experts by not recommending a separate cancer control agency.” It also stated that on 3 October 2001 “Health Minister Annette King says the Government will implement the inquiry’s key recommendations. Researchers will have access to women’s records. Women will be able to opt out at any time if they do not want their details revealed.”

It is highly relevant that the Gisborne report stated that ultimately it was the flaws in the national cervical screening programme that permitted Dr Bottrill to practise as he did. For every reason, this cervical screening programme bill must be developed through the select committee process in the most optimal possible way. There are some fundamental questions to be asked of the ministry and the Minister. Already there has been a delay in the 6-monthly report from the Minister of Health. Only nine of the 46 recommendations in the report of November 2001 concerning the screening programme have been completed. I call upon the Minister to explain why the second 6-monthly summary report has not been completed. I understand that Dr McGoogan was due to make her report, but that has just not happened. Clearly, there have been problems within the ministry and within the unit responsible for dealing with completing the recommendations of the Gisborne cervical cancer inquiry.

It is extremely important that the Minister of Health ensures that all information is available to the select committee, so that the bill will be adequately scrutinised and optimally evolved. It is also important that the Minister and the ministry manage the screening programme far better than they have in the past, and far more expeditiously than they have demonstrated over the last 6 months. National welcomes this bill being referred to the select committee.

I am pleased to speak to this very important bill. I know we say that all bills are important—of course they are, otherwise they would never ever get to the House. But this bill is important because the issue it addresses has had a very long, emotional history, in many respects. I am pleased that we are at this stage in the bill’s progress, and I certainly look forward to it progressing through the House as quickly as possible.

Some of us may ask why this bill is needed, but I think most people in New Zealand will know the reason for that themselves. The issue of cervical cancer screening has had a huge public airing. I remember when the announcement was made about the decision at the Gisborne inquiry. I received a speeding ticket that day, because I was so preoccupied with listening to the decision that we had been involved in for so many months that my mind wandered, and I was not aware that I was doing about 10 kilometres an hour faster than I should have been. That announcement is one that will always remain in my mind for a variety of reasons, but particularly because it was a step toward the closure of that issue, which then gave rise to moving on.

In New Zealand a high number of women develop cancer of the cervix, unfortunately sometimes because of a lack of attention to our own health needs. This is one of the most preventable forms of all cancers, but I think humanity still maintains that 10-foot high and bulletproof attitude, and often we do not take as much care of our own health as we should. I am as guilty of that as anybody else. About 90 percent of the cases of the most common form of cervical cancer are preventable if detected at an early stage and treated appropriately.

The national cervical screening programme was established in 1990-91 to organise cervical screening with the aim, primarily, of reducing the number of women who develop cervical cancer. It is pleasing to note that in the 10 years from 1987 to 1997 cervical cancer rates dropped by 39 percent, and over the same period the death rate for cervical cancer dropped by 44 percent. We have heard the comment earlier today in question time about the figure of 1 percent being acceptable internationally. Of course, we all want zero percent in everything, if at all possible. While that is an extremely long-term and perhaps naive goal, this programme certainly is already having a huge positive benefit—and long may that continue. I am convinced that women are far more aware now of that good old adage “prevention is better than cure” with regard to cervical screening. That has been brought about, to a considerable degree, by this programme and the very proactive and well-thought-through publicity that surrounds it.

We acknowledge willingly that further steps are necessary in order to ensure the more successful operation of the programme, and I am confident that that evolutionary process will occur, with good, positive gains being made. I think, in the end, that while this bill has had a considerable amount of time spent on it, it has not been progressed as quickly as we would have liked. We have had the great New Zealand shut-down over January, and I am pleased that this is one of the very first bills in front of the House this year. I am sure we are unanimous in wanting its rapid progress through the House.

It is with pleasure that I rise to support this bill’s referral to the Health Committee. This bill, which concerns cervical cancer, is one of the rare occasions when it seems that all parties in the House can be unanimous in supporting it to the Select committee. I have been listening with great interest to all the speeches on this bill this afternoon, and I have been particularly heartened by the contributions of Dr Lynda Scott and Dr Paul Hutchison. We are privileged in the National Party to have two such fine parliamentarians who are also very fine and informed doctors, and who can help this House to understand more of the issues in relation to this bill.

Like my colleagues, I have concerns over the control and auditing of the process by the Ministry of Health, and I say that for various reasons. One is that the cervical cancer screening programme that currently exists—the national cervical-screening programme—has obviously worked for a lot of women, and that is a good thing. But what has been shown is that inadequate auditing and excessive amounts of concern about privacy as opposed to health have led to situations where—as in the case of Dr Bottrill’s particular negligence—so many women have needlessly lost not only their fertility but their lives, and have gone through the most appalling process. There is no point in having cervical screening if it is not accurate. Inaccurate screening is worse than having no screening at all. Members will have heard of the woman named “Jane”, whose case is very well known, and who has gone to extraordinary lengths in an attempt to get some justice and personal responsibility from Dr Bottrill. I know Jane and her family. It is awful to see a young woman like her—with a family, with young children to look after—having to go through that sort of process. It is awful to see the sort of pain that she and her family have gone through. That said, it is wonderful to see the sort of bravery she has shown.

One of the concerns that some medical professionals have in relation to this bill is what they see as an opportunity for individual practitioners to be identified. Their concern is that there will be too much emphasis on individual health professionals, rather than on a system. In other words, there will be too much looking for “Dr Bottrills”, rather than for systemic failure. Personally, I do not agree with that. I agree that if there is one thing we need in our health system, it is for health professionals to take individual and personal responsibility for their actions. There is one thing that we certainly need in this country, and that is for people to do that generally and stop blaming the system.

Parliament is certainly trying to look at that issue in this bill by bringing in an auditing process, but I have grave doubts about how that process will work when it is audited by the very people who are running the programme. I echo the concerns of both Dr Hutchison and the ACT spokesperson when I say that there is concern as to who is watching the watchers, and that is something that we on the Health Committee will be looking at. We will be looking at what that process is going to be, and who will be watching the watchers. With a screening programme for something like cervical cancer, women are being told that their records are being looked at so that they can be checked. Women should be able to have a cervical screening smear and know that the results they are given are correct. They should not be told—as Jane was, three times, with three different smears—that they are fine when they are not fine. Jane is just one of the 129 people who were so affected.

We have a national cancer register, and that is obviously a very good thing. It helps us to have better access to information. It lets us know how we should handle health funding and where the money should be spent. There are other areas, though, and here I echo concerns from, I think, New Zealand First. If we have cancer registers, then we should be looking at other sorts of registers, as well, particularly in relation to epidemic-type diseases like HIV/AIDS. Unfortunately, diseases like cervical cancer are diseases that we cannot just sweep under the carpet and hope that they will go away. Like cervical cancer, we are talking about diseases that are in many cases silent killers. There is no outward manifestation of disease, and therefore people will often will not know about it unless they are properly informed, and unless a register—should we have one—is properly audited.

I agree with the speakers who have said it is absolutely correct that there be a right to opt off such a register. It is very important for women to know that their records are their records, and that should they wish to be on the register, their records will be accessed for a proper reason—that is, for the auditing of the results, in order to make sure that their results are right. They also need to know that no matter what, it is their bodies; that what happens to them is their decision, and that they have to have that right. I applaud that provision and hope it survives the select committee process.

Unfortunately, early death from cervical cancer almost always leaves children without a mother and grandchildren without a grandmother. Cervical cancer is a disease that invariably hits women in their forties or fifties, if it is going to hit them at all. That is one of the tragedies; it takes people far too young. It often takes people in the prime of their professional and family lives. Just when they should be there for their children, they are not there. Therefore, I am very concerned to make sure that this bill is strengthened in the select committee, and I am pleased that we are able to support it.

I rise to support the first reading of the Health (Screening Programmes) Amendment Bill with particular feeling, as 10 years ago I was one of the hundreds of women whose lives have been saved by the cancer screening programme. It is a difficult realisation for people to come to—particularly for those who have been careful with their health and have been undergoing regular checks—when a doctor reports to them that they have cancer. It is a shocking time, and most of us would do anything we could to avoid it. However, having read the report of the Cartwright inquiry back in 1988, and parts of Dr Euphemia McGoogan’s report recently on the problems in the Gisborne region, I think that this bill is necessary. It is timely, and it is an important step ahead in improving the cervical screening programme for New Zealand women.

People here have talked about the right to privacy, and I am reminded of a woman who was in the same ward as I was at Greenlane Hospital 10 years ago, who, when I asked her what was wrong with her, said she was “dying of embarrassment”. This was a woman who had children and who was looking forward to the birth of her first granddaughter. Because she was too embarrassed to go to the doctor, and too embarrassed to follow up the physical signs she was displaying, the cancer in her cervix had spread to her bowel, her liver, and her breasts. I believe we have a duty to that woman and to the many other New Zealand women who have died early from a disease that is not always preventable, but is to a large extent curable or treatable – although the treatment is dramatic, painful and, as other members have talked about, it takes a lot of life choices away. I say to all those women that, yes, their right to privacy is important. This legislation proposes the right to opt out of the national cervical cancer register, but I urge women not to, just as I urge them to have regular screens, so that they, like I, can look back 10 years later and say to the public health system in New Zealand: “Thank you for the excellent service that I, and thousands like me, have received.”

This bill sets up a new standard for screening, for the oversight and audit of screening, and for the management of that vital information. It carries out the Government’s undertaking to implement the 46 recommendations that Dr Euphemia McGoogan proposed. I believe that we can congratulate ourselves on the great progress that has been made in this area, but, as with all areas, there is always more to do. I look forward to this bill being thoroughly examined at the select committee and coming back speedily to the House.

Bill read a first time, and referred to the Health Committee.