Cervical Cancer in New Zealand
Published in the May-June 2018 AWHC Newsletter
By Sue Claridge
Globally, cervical cancer is the fourth most prevalent cancer in women, and has the fourth highest cancer mortality rate.1, 2 However this is far too simplistic a picture to be of any relevance to New Zealand, as there is an enormous disparity between developed and underdeveloped nations. In more developed countries, cervical cancer doesn’t make it into the top ten most prevalent cancers and comes in with the ninth highest mortality rate, while in underdeveloped nations cervical cancer has the second highest prevalence and third highest mortality rates. According to WHO, and based on data from 2012, Australia and New Zealand have the second lowest rate of incidence in the world (behind Western Asia) and the lowest mortality rate.3
Torre et al. write that “Geographic variation in the burden and trends in cervical cancer incidence reflect differences in availability of screening, which can prevent the development of cancer through the identification and removal of precancerous lesions, and the prevalence of cervical HPV infection. In several HICs [high income countries], cervical cancer incidence rates have decreased by as much as 80% over the past four decades since the advent of the Pap test.”1
New Zealand’s National Cervical Screening Programme was introduced in 1990; it has been and is currently a cytology-based screening programme, although it is planned that the screening programme will change to primary HPV screening in 2021.4
Smith et al. describe the New Zealand programme as well-established, successful and one with a conscious focus on equity. They write that “since its inception, the National Cervical Screening Programme (NCSP) has recommended three-yearly cytology-based screening for women aged 20–69 years. Three-yearly coverage increased quickly after the establishment of the NCSP to over 70% by 1995, and has remained between approximately 70 and 80% since that time.”4
Smith, Edwards and Canfell analysed cervical cancer incidence data over the period from 1985 (five years prior to the introduction of the NCSP) to 2013. Incidence data were provided by the Ministry of Health and population data by Statistics New Zealand. As well as considering the overall change in incidence, Smith et al. reviewed incidence specifically in Māori women, and also by age group. Following statistical analysis they compared two five year periods; 1985-1989 (pre-NSCP) and 2009-2013. They found that the overall incidence was 56% lower in 2009-2013 than in 1985-1989, with very similar reductions in non-Māori and Māori (58% and 55% respectively) and that statistically significant reductions were observed in all age groups 25 years and over. However, the analysis showed an increase in cervical cancer in the 20 to 24 year old age group in both non-Māori and Māori.
The researchers could not state with any certainty the reasons for increases in incidence in the 20-24 year age group. They considered changes in sexual behaviour in younger birth cohorts, and possible lowering of the age of first sexual activity; however, they believed that such a change would have to have been very substantial and concluded this was not an adequate explanation. Instead they conclude that the “NCSP, has likely had very limited, or no, impact on cervical cancer in women aged 20–24 in New Zealand, and it has not prevented the observed increase in invasive cervical cancer in this age group since the programme”4 thus concurring with international research5, 6, 7 which suggests that screening of women under 25 has uncertain benefit and a greater potential for harm. These harms include overdiagnosis, overtreatment, increased stress and anxiety associated with additional tests and treatments and unnecessary colposcopy.
However, as would be expected for a disease that can take years to develop, the numbers in under 24 year olds are very low compared with other age-groups, representing between 0% and 4.2% of total diagnoses in any one year. Since the publication of the Smith, Edwards and Canfell research in 2017, we have three further years’ worth of data to consider, and since 2011 the proportion of women under 24 being diagnosed with cervical cancer has steadily dropped from 4.2% of total diagnoses in 2011 to 0% in 2016 (see Figure 1)8. The data suggests a gradual increase in diagnoses in under-25s over time, but there are significant peaks and troughs, and the last five years of data suggest a drop. With such small numbers of diagnoses and a rising population it is difficult to determine if there is any real increase in diagnoses at a young age and it may take many more years of data to see how real any apparent trend is in this age group.*
Figure 1 Total numbers of cervical cancer diagnoses in under 25 year olds from 1985 to 2016 and the percentage of total diagnoses for each year.
While reductions overall between non-Māori and Māori are similar, Māori women started with much higher incidence rates (32.53 per 100,000 compared with 15.65 per 100,000 among non-Māori). It is also interesting to note that while ethnicity data is collected for women screened, disability data is not. Overseas research indicates that screening rates for women with physical disabilities are relatively low9, 10 and screening uptake among women with a learning disability is also poor.11
More Recent Incidence Data
It is useful to review the data over the entire period from the introduction of the NCSP to include the most recent data. The research published by Smith et al. only considered incidence data up until 2013. The availability of data on cancer incidence and mortality is always several years in arrears; the latest data on new diagnoses of all cancers is available to 201512 (published in December 2017) and cancer mortality is available up to 2013. For selected cancers, incidence/new registration data is available in a set of Excel tables up to 20163; those selected cancers include cervical cancer.
In 2016 there were 180 new cervical cancers diagnosed (age-standardised rate of 6.7 per 100,000 women); 146 among non-Māori (ASR = 6.2/100,000) and 34 among Māori (ASR = 10.6/100,000).
Figure 2 shows the age standardised** incidence of cervical cancer per 100,000 women from 1991 to 2016.5 ASR data for Māori and non-Māori was not held within the available documents for the years 1991-1994.
Figure 2: Age-standardised incidence of cervical cancer for all New Zealand women, Māori and non-Māori women.5
Cervical Cancer Mortality
Death rates from cervical cancer have dropped as dramatically as incidence since the introduction of the NCSP. In 1988, 99 women died from cervical cancer rising to a peak of 105 in 199114; the age-standardised death rates per 100,000 women for these two years were also the highest at 4.8 and 5.0 respectively13, 15, 16. By 2014, the latest year with complete data, the number of deaths had declined to 46 and the ASR to 1.4 per 100,000 women.
Figure 3 shows the absolute number of deaths per year, ASR and female population for the years 1988 to 2014 inclusive.
Figure 3: Number of actual deaths from cervical cancer7, age-standardised death rate8, 15., 16 and the female population of New Zealand17 from 1988 to 2014.
Since the introduction of the NCSP, the mortality rate from cervical cancer has dropped by 72%.
Compared with other cancers, in 2015 cervical cancer was the 17th highest cause of cancer mortality in New Zealand women (see Figure 4), responsible for only 1.2% of all cancer deaths in women that year. In 2005 cervical cancer was the 16th highest cause of cancer death responsible for only 1.4% of all cancer deaths in women that year; in 1995 it was ninth for 2.7% of all cancer deaths in women; and in 1988 before the NCSP was introduced it was eighth for 3.3% of all cancer deaths in women.7
Figure 4: Major causes of cancer death in women in 20157. Percentage figures represent
the percentage of women who died from the listed cancer as a proportion of all cancer deaths
in women in 2015.
As an overall cause of death, cervical cancer was the 35th highest cause of death among women in 2015 with 53 deaths, behind the major causes of death (cardiovascular disease – 3099; Alzheimer’s and other forms of dementia – 1615; cerebrovascular disease including stroke – 1466) and other lesser causes of death, such as type II diabetes (382); falls (315); intentional self-harm (155); vehicle and transport accidents (81).
Cervical Cancer, Ethnicity and Deprivation
As is the case with many other cancers, there are ongoing concerns about ethnic disparities in the incidence of and mortality from cervical cancer, especially between Māori and non-Māori women.
In a paper published in the New Zealand Medical Journal in 2018, Hider et al write that, between 2008 and 2012, while the proportion of women screened was stable at about 76%, coverage rates were lower among Māori, Pasifika and Asian women.18 They go on to say that reviews of women with cervical cancer in New Zealand have concluded “over 80% of women with cervical cancer were inadequately screened.”
Hider et al undertook a review – commissioned by the NCSP – of women diagnosed with cervical cancer in New Zealand between 2008 and 2012. Their analysis of 772 cases found that “twenty-two percent were among women/wahine who recorded Māori as at least one of their ethnicities and 27% were in the most deprived sociodemographic quintile.” They also found that only 13% of the 644 women aged between 25 and 69 years at diagnosis had an adequate† screening history.13 The research found that this was even lower among Māori women and those who live in areas with higher levels of socioeconomic deprivation.
As was seen in Figure 2, which shows the ASR incidence for all women diagnosed between 1991 and 2016 and for Māori and non-Māori women between 1995 and 2016, there is a significant and consistent disparity in the incidence of cervical cancer between Māori and non-Māori women, with the incidence per 100,000 women much higher in Māori women. For example, in 2016 the ASR of cervical cancer was 10.6 per 100,100 Māori women and 6.7 per 100,000 non-Māori women.
If the deprivation status of women diagnosed with cervical cancer is considered, recent data†† show that more women diagnosed are in higher deprivation quintiles than lower deprivation quintiles (Figure 5).8 The New Zealand Index of Deprivation (NZDep)19 is an area-based measure of socioeconomic deprivation in New Zealand based on nine census variables, where Quintile 1 represents people living in the least deprived 20 percent of small areas and Quintile 5 represents people living in the most deprived 20 percent of small areas.
Figure 5: Diagnoses in each deprivation quintile as a percentage of the total diagnoses for the years 2012 to 2015.5
While there are some variations in the overall trend from year to year, over the four years for which we have data, there appears to be a significant correlation between deprivation quintile and cervical cancer diagnoses, with women residing in areas with the lowest level of deprivation (quintile 1) having a reduced risk of cervical cancer than women residing in areas with the highest level of deprivation (quintile 5).
Robson, Purdie and Cormack write in Unequal Impact II: Māori and Non-Māori Cancer Statistics by Deprivation and Rural–Urban Status, 2002–2006 that “In New Zealand, as in other countries, markers of socioeconomic position (such as income, employment, living standards and deprivation) and geographical distribution of the population are patterned by ethnicity.”20 Thus, Māori women are over represented in higher deprivation quintiles and in age-standardised rates of cervical cancer.
They go on to say that “an increased risk of overall cancer incidence and mortality has been found to be associated with lower socioeconomic status, a pattern that is particularly pronounced for some specific types of cancer”;14 cervical cancer is one of those. In addition, among cervical and other cancers, women with higher levels of deprivation are also more likely to be diagnosed at a later stage than women from areas of higher affluence.14
In their analysis of New Zealand cancer incidence and mortality data from 2002 to 2006 they investigated the relationship between deprivation quintile and incidence and mortality for Māori and non-Māori. Their deprivation data is provided in Figure 6 and Figure 7, and it shows that, while for Māori women both incidence of and mortality from cervical cancer rises significantly as the level of deprivation increases, the impact of deprivation on incidence and mortality in non-Māori is substantially lower and the relationship with deprivation status isn’t entirely linear.
Figure 6: Diagnoses in each deprivation quintile as a percentage of the total diagnoses for Māori and non-Māori for the years 2002-2006 combined.14
Figure 7: Deaths in each deprivation quintile as a percentage of the total deaths for Māori and non-Māori for the years 2002-2006 combined.14
New Zealand data on the relationship between deprivation status and both incidence of and mortality from cervical cancer is consistent with international data. Incidence and mortality is highest in developing countries that, as a whole, carry “a disproportionate share of the disease burden, accounting for 86% of all cervical cancer cases and 88% of all cervical cancer deaths worldwide”.21 However, while industrialised nations have a much lower incidence and mortality, with marked declines over the past several decades, within the richer nations, the burden is carried by the women in the most deprived group. Singh et al write that “those in more deprived groups or lower socioeconomic strata [have a] 2-3 fold higher risk of cervical cancer than their affluent counterparts.”15
In addition, they found that “cervical cancer incidence and mortality rates increased by 7.1 and 5.9 points, respectively, for every 0.2 unit increase in GII [Gender Inequality Index***]. The risk of a cervical cancer diagnosis increased by 24% and of cervical cancer death by 42% for a 0.2 unit increase in GII. GII explained approximately 24% and 33% of the global variance in incidence and mortality rates, respectively.”15
Compared with many countries New Zealand ranks highly in the GII, but still sits at 34th behind Switzerland, Denmark and the Netherlands (1st, 2nd and 3rd), and Canada, Australia and the United Kingdom (18th, 24th and 28th respectively).22
However, data suggests that ethnicity and deprivation plays a greater role in disparities in cervical cancer incidence and mortality in New Zealand than gender inequality. This is evidenced by similar disparities between Māori men and non-Māori men for both gender specific and gender non-specific cancers.14 In an analysis of 2002 to 2006 data, Robson et al,14 found that Māori men have a higher age-standardised incidence of cancer in 15 out of 23 cancers, and higher mortality in the same 15 out of 23 cancers. This compares with Māori women who have a higher age-standardised incidence of cancer in 17 out of 25 cancers, and higher mortality in 19 out of 25 cancers.
Robson et al. found that the “higher levels of deprivation in the Māori population accounted for approximately 27% of the incidence disparity and 15% of the mortality disparity.”14
New Zealand has seen a dramatic reduction in both the incidence of and mortality from cervical cancer since the introduction of the National Cervical Screening Programme in 1990 (excluding women in the under 25 age group), with reductions of 56% in incidence to 2013 and 72% in mortality to 2014. Cervical cancer dropped from eighth to 17th highest cause of cancer mortality in women between 1988 and 2015.
Based on 2012 data, Australia and New Zealand have the second lowest rate of incidence of cervical cancer in the world and the lowest mortality rate. However, we still have significant disparities between Māori and non-Māori women and also between our most affluent and least affluent women.
It is also significant that as few as 13% of women diagnosed with cervical cancer had an adequate screening history, and this is a strong indication that with adequate screening we could see both incidence and mortality fall even further in women 25 years and over.
* Comprehensive age-standardised data for age at diagnosis was not available for all years considered and thus it was not possible to correct for increasing population.
** Age-standardized rates – usually of incidence or mortality – adjust for differences in population age distribution by applying the observed age-specific rates for each population to a standard population. ASRs allows accurate comparison year by year based not only on the actual and changing population of women in NZ, but the changing and varying populations in different age-groups.
† adequate screening is defined such that there is no between-screen interval of three calendar years or more in six to less than 84 months prior to diagnosis13
†† Deprivation data specifically for cervical cancer diagnoses is only available for the years 2012-2015.
*** The GII measures gender inequalities in three important aspects of human development—reproductive health, measured by maternal mortality ratio and adolescent birth rates; empowerment, measured by proportion of parliamentary seats occupied by females and proportion of adult females and males aged 25 years and older with at least some secondary education; and economic status, expressed as labour market participation and measured by labour force participation rate of female and male populations aged 15 years and older.
1 Torre, L.A. et al. (2017): Global Cancer in Women: Burden and Trends, CEBP Focus: Global Cancer in Women, Cancer Epidemiol Biomarkers Prev; 26(4); 444–57.
2 American Cancer Society (2016): Global Burden of Cancer in Women: Current status, trends, and interventions, Atlanta, Georgia.
3 GLOBOCAN (2015): Cervical Cancer Estimated Incidence, Mortality and Prevalence Worldwide in 2012, IARC, World Health Organisation, accessed at http://globocan.iarc.fr/old/FactSheets/cancers/cervix-new.asp.
4 Smith, M.A., Edwards S. and Canfell, K. (2017): Impact of the National Cervical Screening Programme in New Zealand by age: analysis of cervical cancer trends 1985-2013 in all women and in Māori women. Cancer Causes Control. 2017 Dec; 28(12):1393-1404.
5 NSU (2016): Evidence supporting decision to stop cervical screening in women aged 20–24 years, National Screening Unit, Ministry of Health, accessed at https://www.nsu.govt.nz/health-professionals/national-cervical-screening-programme/age-range-change-cervical-screening
6 Sasieni P, Castanon, Cuzick J, and Snow, J. (2009): Effectiveness of cervical screening with age: population based case-control study of prospectively recorded data. British Medical Journal, 2009; 339:b2968
7 Patel A, Galaal K, Burnley C, et al. (2012): Cervical cancer incidence in young women: a historical and geographic controlled UK regional population study. British Journal of Cancer, 2012;106:1753–1759.
8 New Zealand Health Information Service (various years): Cancer: New Registrations and Deaths (various years), Ministry of Health NZ, accessed at https://www.health.govt.nz/nz-health-statistics/health-statistics-and-data-sets/cancer-new-registrations-and-deaths-series.
9 Horner-Johnson W, et al. (2014): Breast and cervical cancer screening disparities associated with disability severity; Womens Health Issues. 2014 Jan-Feb;24(1):e147-53.
10 Lofters A. et al. (2014): Screening for cervical cancer in women with disability and multimorbidity: a retrospective cohort study in Ontario, Canada; CMAJ Open. 2014 Oct 1;2(4):E240-7.
11 Lloyd JL. and Coulson NS. (2014): The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study; Journal of Intellectual Disabilities. 2014 Jun;18(2):129-145.
12 New Zealand Cancer Registry (2017): New cancer registrations 2015, Ministry of Health, available from https://www.health.govt.nz/publication/new-cancer-registrations-2015.
13 New Zealand Cancer Registry (2018): Selected cancers 2014, 2015, 2016, Ministry of Health, available from https://www.health.govt.nz/publication/selected-cancers-2014-2015-2016.
14 New Zealand cause of death/mortality tables (mortality 3-character ICD 1988-2015) provided by Analytical Services, Ministry of Health in a personal communication on the 3rd of July 2018.
15 National Cervical Screening Programme (2005): Cervical Screening in New Zealand: A brief statistical review of the first decade, NSU, Ministry of Health NZ, accessed at https://www.nsu.govt.nz/system/files/resources/ncsp-statistical-review.pdf
16 Smith, M., Rumlee, L. and Canfell, K. (2018): National Cervical Screening Programme Annual Report 2015, NSU, Ministry of Health NZ, accessed at https://www.nsu.govt.nz/system/files/page/national-cervical-screening-programme-annual-report-2015-jun18.pdf
17 Statistics New Zealand (2018): Estimated total population by sex, year ended 31 December 1926–2017 and 30 June 1937–2017, NZ Stats, accessed at http://archive.stats.govt.nz/browse_for_stats/population/estimates_and_projections/historical-population-tables.aspx
18 Hider, P. et al. (2018): A review of cervical cancer occurrences in New Zealand 2008-2012. New Zealand Medical Journal. 2018 Mar 23; 131(1472):53-63
19 EHINZ: Socioeconomic deprivation profile, Environmental Health Indicators New Zealand, College of Health, Massey University, accessed at http://www.ehinz.ac.nz/indicators/population-vulnerability/socioeconomic-deprivation-profile/
20 Robson B, Purdie G, Cormack, D. (2010): Unequal Impact II: Māori and Non-Māori Cancer Statistics by Deprivation and Rural–Urban Status, 2002–2006. Wellington: Ministry of Health.
21 Singh, G.K., Azuine, R.E and Siahpush, M. (2012): Global Inequalities in Cervical Cancer Incidence and Mortality are Linked to Deprivation, Low Socioeconomic Status, and Human Development, International Journal of MCH and AIDS (2012), Volume 1, Issue 1, Pages 17-30.
22 United Nations: Table 5: Gender Inequality Index, United Nations Development Programme Human Development Reports, accessed at http://hdr.undp.org/en/composite/GII. See also: http://hdr.undp.org/en/content/gender-inequality-index-gii
Many women’s health groups are understandably anxious at the thought of the NSU making changes to New Zealand’s excellent screening programme, and question whether the HPV test will actually be of much benefit to those women who are currently not being regularly screened.
New Zealand currently has one of the best cervical screening programmes in the world. It was established in 1990 in the wake of the Cartwright Inquiry into the treatment of cervical cancer at National Women’s Hospital. Since then the numbers of women who get cervical cancer and the number of women who die from it have reduced by 60%.3 MOH statistics reveal that there are now 150 – 160 women who are diagnosed with cervical cancer each year, and about 50 women who die from it.
espite the serious reservations that continue to be raised about the NSU’s (National Screening Unit) plan to change the primary cervical screening test from the current liquid-based cytology test to primary HPV (human papillomavirus) screening, the NSU recently announced that it will make the switch to HPV primary screening in 2018.1, 2
Women who are unscreened and under-screened feature highly in those diagnosed with cervical cancer, and Maori women are disproportionately represented in these statistics. Maori women have a registration rate for cervical cancer twice that of non-Maori women, and a mortality rate about 2.5 times that of non-Maori.4
The most efficient and effective way of increasing the rate of regular cervical screening for Maori women and for other under-screened women is to introduce free cervical screening. The AWHC has been actively lobbying for this for some years as we are often contacted by women who do not understand why breast cancer screening is publicly funded, but cervical screening is not.
Need for adequate information
There are in fact several issues that give cause for concern. One of the most important ones is the information the NSU produces for people about its screening programmes. The AWHC and others have protested for some years about the changes needed to the pamphlets and booklets about breast cancer screening. Women need to know about the risks associated with breast cancer screening which include over-diagnosis and over treatment. The NSU has been extremely reluctant to include such information and when it does it is unacceptably brief and downplays the risks…
Use of international statistics
Likewise, when discussing cervical screening the Ministry of Health and the NSU usually begin by announcing that around 275,000 women die from cervical cancer each year and continue to provide international statistics, but do not mention what the actual figures are for women living in New Zealand. Of course, NZ health agencies are not alone in doing this, but that does not make it acceptable to set the scene for discussions about proposed changes to cervical screening by overdramatising the incidence of cervical cancer in this way.
The facts are that over 85% of cervical cancer cases are found in low-resource countries, with the incidence and death rates being the highest in sub-Saharan Africa, Central America, South-Central Asia and Melanesia.5 Most of these countries do not have organised cervical screening programmes, nor do they have the necessary follow-up diagnostic and treatment services.
While the information about cervical screening, and HPV and cervical cancer that is on the NSU website states that:
“It is estimated that about 80 percent of sexually active women will become infected with HPV at some point in their lives. Most HPV infections have no symptoms, and in nearly all cases (especially in women under 30) the infection will clear on its own in 6-24 months, without the woman even knowing she had it,”6 the information in the pamphlets on cervical screening does not mention this important fact.7
Benefits and risks of the HPV test
Hopefully these resources will all be updated prior to the introduction of primary HPV screening and the important facts emphasised, eg how the body nearly always clears HPV infections without the need for colposcopy or treatment. Women who are identified as having one of the high-risk types of HPV are particularly vulnerable in terms of making informed decisions about the risks and benefits of further investigations.
The March issue of the NSU newsletter features an article about the new consumer-friendly website that the NSU is developing on cervical and breast screening which is due to be rolled out in mid-2016.8
The article states that “the website will also be accompanied by a social marketing campaign and new consumer resources to help increase screening rates especially for under-screened and unscreened women. The new website, social media and consumer resources are being designed with the help of advertising agency FCB.”
This is not good news. The experience of women’s health groups is that advertising agencies are often not good at producing health information for consumers, as they do not understand the Code of Consumers’ Rights or the need for informed decision-making. They see their brief as being promotional resources rather than providing evidence-based information on the benefits and risks of cervical and breast cancer screening.
The elephant in the room
The elephant in the room is the influence of big pharma. At the NSU/MOH consultation meeting the AWHC attended in October last year there were more representatives from Roche in the room than consumer representatives.
It was also obvious from a careful read of some of the 87 submissions the NSU received that the drug company was behind some of the statements that when the switch to HPV screening is made New Zealand women must have access to Roche’s FDA-approved HPV test, as other tests were inferior, or not FDA-approved. For example, one submitter, who of course wished to remain anonymous, wrote:
“I strongly recommend that the Cobas® HPV test is considered for use in New Zealand because it is the only clinically validated, FDA-approved and CE-IVD marked assay for first-line, primary screening of cervical cancer.”9
Another anonymous submitter even described women’s right to have access to Roche’s test as an equity issue.
It is difficult to know exactly who or what is behind the NSU’s rushed move to adopt an HPV test as the primary cervical screening test. And only time will tell whether it will save money and/or save lives.
From the November 2011 AWHC Newsletter
The need for regular independent reviews of New Zealand’s National Cervical Screening Programme (NCSP) was one of the measures introduced in the wake of the report of Ministerial Inquiry into the Under-reporting of Cervical Smear Abnormalities in the Gisborne region in 2001 – known as the Gisborne Cervical Screening Inquiry.1
In January 2011 Jeffrey Tan (Australia), Roberta Howlett (Canada) and Linda Thompson (New Zealand) were appointed to undertake an independent review of the NCSP. The review committee was established by and accountable to Associate Minister of Health, Tariana Turia. The committee’s report was published in August 2011 and contains 39 recommendations.
Despite the National Screening Unit’s attempt to put a positive spin on the review committee’s findings, many of the observations about the current state of affairs within both the National Screening Unit and the NCSP eerily echo evidence and warning statements given in some of the submissions made to the Gisborne Inquiry.
In September 2000 Sandra Coney, director of Women’s Health Action, warned the Gisborne Inquiry in her final submission:
“The history of the NCSP and the Ministry’s relationship with it requires that the future involvement of the Ministry of Health be treated with caution” and in arguing for the establishment of a national cancer control agency separate from the Ministry she recommended that the NCSP be located within such an agency.2
The “Report of the Parliamentary Review Committee regarding the New Zealand Cervical Screening Programme”3 contains the following statements:
“The Ministry of Health has restructured many times in this past decade, inevitably affecting the NSU and the NCSP.” (page 8)
“From 2001 and 2011, reports and inquiries on cervical screening highlighted concerns and recommended change in the development, management, autonomy and leader-ship of the NSU.” (page 43)
“Ministry of Health restructuring over time has confirmed a management structure within the organisation that may have had the effect of compromising clinical leadership.” (page 44)
“Multiple changes within the Ministry of Health carry the risk of loss of institutional knowledge and screening expertise. High staff turnover has translated to lost expertise. The impact on providers and screening participants has been noted with respect to limited or no communicat-ion about changes with the loss of continuity and key contacts.” (page 45)
“Externally there is a perception of a general ‘dumbing down’ of both the NSU and NCSP. Feedback has indicated an impression externally of a pervasively disorganised and reactive culture, disconnected relationships with stakeholders and poor co-ordination.” (page 45)
The women’s health groups who attended and closely followed the Gisborne Inquiry were strongly opposed to the prospect of the NCSP remaining within the Ministry of Health due to some of the very problems identified in this report.
After the Gisborne Inquiry, the NZ Cancer Control Trust was established in February 2001.4 Unfortunately the NCSP remained within the Ministry of Health.
Ethnicity and Inequalities
The Parliamentary Review Report noted that increasing participation in the NCSP and reducing disparities in the screening coverage for Maori, Pacific and Asian women are hugely important issues that have yet to be fully appreciated and addressed.
Echoing concerns expressed by women’s health groups over the past few years regarding the establishment of the HPV vaccination programme, the report stated: “there is room for improvement in the organised programme via improved collaboration and integration with the HPV immunisation programme and improved alignment with New Zealand’s cancer control strategy.”
Six of the 39 recommendations concerned improving coverage, participation, equity, access and reducing the burden of disease.
Quality Assurance and Monitoring
A woeful and utterly negligent lack of monitoring is one of the issues that led to the Gisborne Inquiry – prior to 2000 the NCSP had never been monitored despite repeated calls from women’s health groups during the late 1990s for an audit of the programme5 – and while the review commend- ed progress in the resources that have been expended on quality initiatives, the report stated that “consultation and collaboration between the NSCP and key stakeholders require significant improvement” as “awareness of current NCSP quality activities is very limited.” (page 8)
There were six recommendations on quality assurance and monitoring issues.
Once again echoing the concerns repeatedly raised during the Gisborne Inquiry, the report stated:
“From 2001 to 2011, reports and inquiries on cervical screening highlighted concerns and recommend-ed change in the development, management, autonomy and leader-ship of the NSU.” (page 43)
“Enhanced leadership capacity – including population health, public health and screening expertise – is urgently required within the NCSP to improve the depth and breadth of expertise and experience within the NSU and NCSP.” (page 9)
Despite the major problems identified during the Gisborne Inquiry regarding clinical leadership within the NCSP, followed by the recommendations from the Office of the Auditor-General Ministry in 2002/03, the report noted “Ministry of Health restructuring over time has confirmed a management structure within the organisation that may had had the effect of compromising clinical leadership,” and warned “Clinical experts and advisors must remain as the linchpin in any clinical programme.” (page 44)
There were six recommendations on workforce issues.
The NCSP Register
The register has been a thorny issue since the very beginning of the NCSP and Sandra Coney’s submission to the Gisborne Inquiry contained a detailed account of the repeated attempts women’s health groups made to keep the establishment of New Zealand’s first screening programme focused on cervical screening rather than the register, despite the ongoing intransigence of the Ministry of Health.5
The report noted that “complaints to the NCSP have highlighted the need for ongoing public education efforts to inform participants that their screening information is included in the NCSP Register and to advise them of their withdrawal options.” (page 10)
There were six recommendations concerning the NCSP Register.
Organisational & Structural Issues
The issue of representation for consumer and priority women’s groups was dealt with under this heading. The report stated:
The two remaining NCSP advisory groups must have a stronger role and function to ensure an adequate voice and presence for consumer and women’s groups. These include the NCSP Advisory Group and the Maori Monitoring & Equity Group.”
As a first step in the NSU’s plan to merge Maori, Pacific and other health promoters into one hui, the NSU held a National Leadership & Workforce Development Forum in March 2011. However, the report noted that the NSU still needs to consider whether other priority women’s groups are sufficiently covered by these arrangements.
The review also advised that cervical screening be integrated with other health programmes, and the whanau ora approach must be given priority.
There were four recommendations on organisational and structural issues.
Issues around colposcopy and the HPV vaccine were also addressed in the report.
Finally, the review committee recommended that future reviews be undertaken at 5-yearly intervals instead of every 3 years.
The report ends with a brief section on future directions and refers to the confusion around the respective roles of NCSP and the NSU. The original plan was for the NCSP to provide a service that would reduce the burden of disease from cancer of the cervix. “This would encompass the women who participate, health promotion activities, smear takers and assessment services, laboratories and related staff, treatment services, monitoring agents and evaluation teams.
The NSU is the primary, but not the only, agency responsible for facilitating the organisation of all these activities, but for some, NSU should not have direct control. NCSP is larger than the NSU. Some organisational, accountability and leadership problems are apparently related to a contrary NSU philosophy that the NCSP is merely one of several screening programmes. NSU’s intended role was to facilitate and support NCSP, and it should operate accordingly.
NSU is a major stakeholder regarding successful implementation and maintenance of a cervical screening programme, with a role to facilitate the organisation and cooperation of all the stakeholders and partners.
Yet the main stakeholders have to be the women of New Zealand; without that focus, participation and effectiveness may be reduced.”
The Parliamentary Review Commit-tee’s Report was released with little fanfare. It remains to be seen whether the 39 recommendations will be implemented or whether it will be consigned to history as just another report that highlighted concerns about the NCSP.
Health Promotion Agency
Meanwhile the government is in the process of establishing a Health Promotion Agency to take over the health promotion and social marketing roles of both the Alcohol Advisory Council (ALAC) and Health Sponsorship Council (HSC).6
It is not clear if the new agency will also be undertaking all the other work currently done by both councils.
Word has it that for some utterly unfathomable reason the new Health Promotion Agency may also be taking over the NSU’s health promotion and social marketing activities. Whoever thought that this was a good idea obviously has no understanding of the history and role of screening, or the risks involved in removing these important tasks from the NCSP.
Once again the NCSP is about to become the victim of yet another round of governmental restructuring. When will they ever learn?