Health (National Cervical Screening Programme) Amendment Bill

It is with pleasure tonight that I take the first call on the Health (National Cervical Screening Programme) Amendment bill that amends the Health Act, which is referred to as the principal Act in the bill. The commencement provisions in Part 1 have been changed. The Act is to come into force on 1 July 2004—that date having been changed from 1 July 2003, which is well past.

This legislation has been somewhat contentious. Initially, the legislation that was to come into force on 1 July 2003 was to be an omnibus bill for health screening programmes, although it had been based almost exclusively on the need to have an effective National Cervical Screening Programme. There was a great deal of debate throughout the Health Committee as to whether this bill should apply to all screening programmes, or whether it should be specific to the Cervical Screening Programme. The decision of the committee was that it would be specific to the Cervical Screening Programme. Hence, there has been a great deal of consultation on this bill and that is why it now comes into force on 1 July 2004.

However, amendments in the Minister’s Supplementary Order Paper state that only new section 112D and section 6 come into force on 1 July. New clauses provide that the Act comes into force 12 months after the date on which it receives the royal assent. That is to allow the appointment of appropriate people to be made under the Act so that they can implement the provisions in the bill.

If one looks at cervical cancer statistics in this country, in 1981, 12 women per 100,000 developed cervical cancer and five per 100,000 would die of it. In 2000, after the screening programme was set up in 1990, to show how effective that programme was, the incidence of cervical cancer had gone down, and 10.6 women per 100,000 now develop cervical cancer in this country and three die. That is a 46 percent reduction in the death rate. It is a very significant reduction in the death rate from a terrible disease that killed too many New Zealand women. With no screening, one in 200 women would die. With screening, one in 1,280 women die.

That is a huge difference. That is why it is so important for this country to develop screening programmes. But for that to happen, an effective measure is needed by which to screen. Screening for cervical cancer is not a really exact science. When one is looking down a slide in a laboratory to find abnormal cells, it is a bit like looking for a needle in a haystack. The cell does not jump out and say: “Hey, I’m cancer here.” One has to be very skilled. Part of what we have been doing with this programme has been in response to the McGoogan report to the inquiry in Gisborne, making changes to cervical-screening programmes so that we can ensure we have a gold standard programme here that will ensure effective delivery at the coalface—where women are screened—in the laboratories, and by the clinicians. Then there is the treatment for those women. That is why we need to get this legislation into effect as soon as possible, and why its commencement needs to be this year, 1 July 2004.

In 2001, 191 women developed invasive cervical cancer, and 71 died. We still have more ground to cover. We want to see women on the programme. At the moment 1 million women are on the programme. We want to ensure that those women can have absolute confidence in the National Cervical Screening Programme. We also want to make sure that if this programme is used for other sorts of screening, we have a standard that we can apply. Later in the debate we will be talking about the specifics that have delayed this bill to some degree, which is why it is now coming into force in 2004 and not 2003, and looking at why the programme changed from “opt-on” to “opt-off”. It became an opt-off programme, looking at access to primary-care records. But that is for further debate later in the bill. We know that other screening programmes are being developed in New Zealand for breast cancer and prostate cancer.

I shall take an early but short call to endorse the comments made by the Opposition spokesperson on health in her opening remarks on the Health (National Cervical Screening Programme) Amendment Bill. I do not think I could have put it better than the member already has.

The key point she made is that we are looking for a screening programme that is of gold standard; that is the best we can possibly provide to the women of New Zealand. This bill addresses a number of issues concerning the development of a very good screening programme. It gives effect to four specific Gisborne cervical-screening inquiry recommendations, of the 46 recommendations made, and some of them relate to changes that we need to make in this Parliament.

The point I would like to make very clearly is that very good work has been done across parties in this Committee to get as much consensus as we can around the issues in this bill.

The bill came back from the Health Committee, which had done an extremely good job on it. The committee made quite a number of amendments to the bill, which I accepted. There were some issues, however, that were of concern, particularly to the women in the House. We met, sat around a table, and thrashed out how we could improve on what had been reported back to Parliament, to make it even better. As Dr Lynda Scott said, we will mention some of those when we get into the next part of the bill.

But I want to acknowledge that really positive work. It was one of those occasions, which does not always happen in Parliament, when members sat down, looked at issues, and then came up with some decisions. I acknowledge that work; I am putting it on the record. We will debate some of the other issues in detail, when we get into the next part of the bill.

On behalf of New Zealand First, I am pleased to speak on Part 1 of the Health (National Cervical Screening Programme) Amendment Bill. The commencement date is 1 July 2004. We know that that commencement date is important, particularly to all of those who are affected by this particular bill. We want to have women enrolled in this programme, we want to have a gold standard programme, and we want a programme that the women of New Zealand can have total confidence in.

I am particularly pleased that it is 2004, because the sooner we get on to this legislation the better, but also because, by this time, all the people who are already enrolled in this programme can be informed of the changes to the programme they originally joined—namely, access to their health records by programme evaluators. We know that this step cannot be undertaken until this legislation is passed. So the sooner it is passed, the sooner we will be able to progress this.

I am pleased, too, to think that, in the very near future, all the women in New Zealand enrolled in this programme can expect to be fully informed about the new process, and we will look forward to monitoring the progress of this process. New Zealand First definitely supports the development of screening programmes of this nature that benefit the health of all New Zealanders. Women’s health is particularly important, because of the families that they are part of. We know that this is a disease we do not want our women to have.

Some of the previous speakers have talked about the commencement date of this bill, and we are frankly very relieved to know that the majority of the provisions in the bill will not come into effect for another 12 months. I think that there needs to be time for a woman in New Zealand to understand the true implications of this bill. Would that it were true what the New Zealand First representative said—that the women of New Zealand will be fully informed of the whole screening programme and the implications of this bill. But in our view this bill, regrettably, will erode the confidentiality and the privacy of personal health information and the approach to privacy issues that New Zealand has taken over many years. It will also undermine the confidentiality of the patient-doctor relationship, and I am sure I do not need to remind members that confidentiality is at the heart of the patient-doctor relationship. Most of us would not divulge details about our health and well-being to a doctor if we felt that what we were going to put on a doctor’s records could be accessed by an unspecified number of people—and that, I regret to say, is exactly the implication of this bill.

The CHAIRPERSON (H V Ross Robertson): This debate is about the commencement date.

I listened with great interest to the speaker from the National Party and others, and they spoke in an extremely wide-ranging manner. I took my cue from them. No one objected to them, and that is why I am speaking in this way.

The CHAIRPERSON (H V Ross Robertson): That is not correct, because I did bring them in a couple of times, as well, to talk about the commencement date. The member can try.

I think that it is a good thing that there are 12 months before the provisions fully come into effect, so that the women of New Zealand can become aware of the implications of this bill. Basically, under the provisions of this bill, all doctors in New Zealand will be required to hand over the medical records of any woman out of a million women who are enrolled in the National Cervical-screening Programme, and, of course, of any other woman who chooses to join the programme. I think that at the moment many women are not aware of the amendments made to this bill that will undermine the privacy of health information. That is why it is fortunate indeed that there are 12 months in which to contemplate the implications of this bill.

Frankly, I am absolutely amazed that most of the parties in this Parliament, including the National Party, New Zealand First, and ACT, who expressed serious concerns during the debate last time, accept the bill on this occasion, and will support it. I wonder whether they too have thought through the implications of the amendments that are contained in the Minister’s Supplementary Order Paper. Basically, once the commencement date of this bill has come into effect, New Zealand women will be faced with Hobson’s choice: either they stay on the National Cervical-screening Programme and surrender their right to informed consent, or they opt off the programme and risk both their health and the efficacy of a nationwide screening programme.

I believe that, far from strengthening the National Cervical-screening Programme, the last-minute, eleventh hour amendments to this bill will cause many, many women to choose to opt off the national cervical-screening register, because, quite frankly, they will not be happy with the thought that their personal health records can suddenly be automatically accessed without their consent by an unspecified number of evaluators.

So over the next 12 months, as women become aware of the amendments and the implications of this bill, I believe that there will need to be some rethinking of these last-minute amendments, which have been parachuted into this bill. They were not in the bill when it went to the select committee, but were put in at the last minute. I think that when we think this through, we will have time, hopefully, to rethink this bill.

I rise to speak to the Health (National Cervical Screening Programme) Amendment Bill, and in particular to Part 1. The commencement date is 1 July 2004 now, rather than 2003, and I will hopefully have a little latitude to talk about this.

I note the comments of Sue Kedgley, my former colleague from the Health Committee, who is concerned very much about the privacy issues. If there is one thing I am somewhat concerned about, it is privacy issues and confidentiality. I was very concerned when I first looked at this bill. I was extremely concerned that we might need to put the commencement date out further, because I was worried about the implications.

Certainly, it was very concerning to me that anybody, I thought, could have a look at the records and get access to them. But I was very much assured, and reassured really, not only by the Minister and the officials but by looking at the amendments to see that in fact the only people who will have access to women’s medical records in relation to this bill—and I note that the commencement date is 1 July 2004—are in fact the people who are evaluating or, in other words, auditing, the process. That is why I felt that it was very important that the bill be passed this year, rather than next year.

One of the concerns about the auditing is that lawyers’ records—and having been a lawyer for so long, I am very much aware of this—are regularly audited by auditors. They look through files and check that things are where they are supposed to be. Of course, that is the way it should be, yet lawyers never get authorities for that, and the reality is that that is all the auditors look at—to make sure that things are as they should be. This particular bill is about the auditing. It is a terrible crock—in fact, it is a shocking thing to do to women—to have cervical-screening programmes that do not have any auditing or evaluation. It is nonsense. It is worse than nothing, because it gives people a feeling of well-being—

💬 Hon Member: False!

It gives them a false feeling of well-being, and that is something we should not allow. That is what led to the Gisborne cervical cancer inquiry—the McGoogan inquiry. We do not want to see that, this year, next year, or any other year. That is why I am particularly pleased to see this legislation being passed this year.

The reality is that women will still be able to get Pap smears done even if they are not part of the screening programme. The people that Ms Kedgley mentioned in her speech will not be chopped out of having their cervical tests done. They will be able to have them done, usually by their general practitioners, or whoever else does the tests for them, and they will still get the results, but they will not get the letter from the national cervical-screening register telling them when their call-up time is. In fact, their general practitioners will be doing that. It is not as though they will suddenly be bereft of any medical assistance. They can choose to be in charge, with their doctor, of their own records and their own call-ups.

I do not think that some of Ms Kedgley’s concerns will necessarily come out this year or next year as being quite so major. But, certainly, in the National Party we will be very much concerned, if it looks as though people are just opting out altogether and not taking part in the programme, to discuss with the other parties whether there should be an amendment to the legislation. I can see the Minister in the chair, Annette King, nodding away, because none of us wants to see an epidemic of the proportions that there has been in this country. That is why we are particularly keen to see the commencement date be 1 July 2004, and not later.

I rise on behalf of the ACT party to speak in the debate on the Committee stage of the Health (National Cervical Screening Programme) Amendment Bill, and in particular, Part 1. Part 1 consists of the commencement date, which I note has now been pushed out by a year. I am not the ACT member who sat on the Health Committee to look into the bill, and I understand from that member that the committee has done a very thorough job, which is why, I understand, the date has been pushed out to 1 July this year. But I do note that the bill itself has changed, as I understand it, from being a “think big” bill—in other words, it was supposed to be an umbrella bill under which a whole lot of screening programmes could have been slotted in—to being a more modest and specific proposal to deal with just the cervical-screening programme. I am very pleased to hear that, because anybody who knows anything about national programmes—databases, screening programmes, or whatever one wants to call them—knows that they are, or can be, fraught with problems. The fact that the Government has another half-year to get its planning into place before it launches the provisions in this bill must allow the Minister to sleep a little easier.

I already know, from my own experience and the experience of people I know, that the present cervical-screening and breast-screening programmes are fraught. They are fraught with problems because people get advised late—years late—that they are due for another screening. When they turn up for a screening—in the breast-screening programme, in particular—they are told to go to the wrong place at the wrong time. All sorts of problems arise because the programmes are trying to deal with a lot of people. In this case, I understand that about a million women will have to be brought on to the programme, and, as we have already heard, there is now an opt-out provision. But a million women means an awful lot of planning. Again, the fact that the commencement date is 1 July this year does allow some grace for all those officials who will have to take part in that planning process, because it is no mean feat.

I understand that some of the concerns raised by the ACT party have been taken into account in the way the bill has been set up, and I say to the Minister that it is a positive thing—she has enabled the concerns of all the members on the committee to be looked at, taken into consideration, and addressed. The problem that we have from the outside is that it would be very nice to have an assurance, or a plan, from the Minister to tell us how she plans to implement the programme, which, as I say, will be dealing with a million women. It starts on 1 July 2004, so the question is whether that is the date on which planning starts—or is the planning already under way right now, so that on 1 July 2004 the first lot of women get their letters to say that they are now due for their tests?

Given that this bill is in its Committee stage—which does allow different submissions to be put to the Committee on changes and modifications that could be made to the bill—it would be very helpful to the Committee of the whole House if the Minister could walk us through the programme and the progress that she intends to take between now and 1 July 2004, and then walk us through what she intends to do on 1 July to get this programme, dealing with a million women, under way.

The bill before us has been very thoroughly and robustly examined by the Health Committee. Originally, it was thought that the legislation would be able to apply in a more general sense to future health-screening programmes. However, the advice from the Regulations Review Committee was such that it was decided to limit its scope to the Cervical-screening Programme that we are looking at today.

When we talk about the time frame for commencement, we also need to remind ourselves that we are talking about the time frame of a disease—a very preventable cancer. About 90 percent of all cases of the most common forms of cervical cancer are preventable if detected at an early stage and treated appropriately. Preventing deaths is possible, but it hinges on the effectiveness of the screening programme in operation. As a country, we have mourned the results of a screening programme that did not guarantee 100 percent accuracy for women, and we have been given the mandate to put that right to the best of our ability. We also need to go back in time and remember the Gisborne inquiry that started this process. The evaluation that was so missing at that time will be addressed by this legislation.

I commend the chair of the Health Committee, Steve Chadwick, for her leadership in this regard. I mention Dr Lynda Scott—it is always great on a committee to have people with a medical background—and also Heather Roy from ACT, whose contribution I found extremely helpful in the process. The most delightful aspect of this bill—and I say to Mrs Collins that it was delightful to work with her also—was that the cooperation worked. I also thank the Minister for the extended meetings regarding the bill, and for the open and frank discussions that we had over ongoing concerns after it was reported back.

It is important to remind ourselves, when we talk about the time frame of this bill, that we are dealing with a screening programme, which is different from a diagnostic programme. There are flaws in a screening programme just by its very nature, and if we do not have in place the kind of checks and balances that this legislation seeks to establish, then a screening programme is not worth the paper it is written on, and the system that is set in place can become a very dangerous tool.

United Future is thrilled to support this bill, and we will make further comments in Part 2.

I move, That the question be now put.

Motion agreed to.

The question was put that the amendment set out on Supplementary Order Paper 184 in the name of the Hon Annette King to Part 1 be agreed to.

Amendment agreed to, and Part 1 as amended agreed to.

Part 2 Amendments to principal Act and transitional provision