Regulating Access
5.4 The Priority Criteria
As a result of the Aotearoa/New Zealand Government’s history of non-intervention in ART, certain medical professionals have almost total unregulated power to make social, moral, and legal judgements with regard to who can use ART (Henaghan, 1992:172). Although there is no explicit legislation or prohibition restricting access to treatment in Aotearoa/New Zealand, access to ART practices are most obviously controlled through the rationing of publicly funded treatment. As mentioned earlier, providers holding contracts to provide public treatment are required to restrict access through the application of the Clinical Assessment Criteria (CPAC) and the imposition of a point threshold. Consequently, the Health Funding Authority’s (HFA) service specifications and the CPAC are the most influential documents in relation to the control and regulation of clinics that compete for public funding. Nevertheless, the interpretation and implementation of the policies outlined in these documents remain the responsibility of the individual clinicians. Health professionals also control and regulate the recruitment and selection of gamete donors, as well as deciding who will have access to the donated gametes and what information will be collected (Daniels & Lewis, 1996a:1525). As the ART provider is customarily the only link between all of the parties involved, and the only person with access to relevant information about the use of gametes and the identity of donors, they hold a powerful position in deciding what happens to that information (Else, 1999b:57). As a consequence, they regulate the relationships that can exist between these parties (Daniels & Lewis,
114 The terms ‘priority-setting’ and ‘rationing’ are often used interchangeably when considering the
1996a:1525). Although there are certain biomedical considerations regarding the ultimate success of any ART procedure that must be taken into account, the issue of restricted access based on social rather than clinical factors places non-medical decisions about who are appropriate parents in the hands of the clinicians. According to Henaghan (1992:177), the power to decide who can use ART “is really the power to decide who has the right to have children.” However, as discussed in Chapter Three,115 this is not a power that some health
professionals necessarily want.
There are social issues that have to be discussed, where you have got values issues, like the single women and the lesbians, those things I do not really mind either way, because I would prefer not to have to make that decision, I will manage the policy. You make the policy; I will manage it.
(Mark Leggett, Interview: 22 June 2000)
The newly implemented CPAC is based on the National Health Committee’s consultation document, Access to Infertility Services: development of priority criteria (Gillett & Peek, 1997). This document was commissioned in response to the health sector reforms and the rationalisation of public services and funds mentioned earlier. It proposed a set of guidelines that were “intended to standardise diagnosis of infertility for any couple presenting to a primary, secondary or tertiary infertility service” (Gillett & Peek, 1997:6, emphasis added). However, its main aim was to present criteria for access to publicly funded infertility services and to provide a model for more explicit rationing. The CPAC require service providers to identify exclusion factors and modifying factors, and to allocate points to objective and social factors. Exclusion factors for access to treatment are based on situations that the providers consider would compromise the safety of the couple or a child (Health Funding Authority, 2000a:28). The referral guidelines do not specify how such risks will be assessed and who will be considered able to make such judgements. Although it is acknowledged that “no factor may be used that is unlawful and that might breach the Human Rights Act or the Bill of Rights Act”, it is also stated that “ultimately it will be the doctor, practising at a primary, secondary or tertiary level, who will decide – and that doctor would need to defend this decision” (Health Funding Authority, 2000a:28). However, Hunter (1997:28) argues that the debate surrounding whether health service rationing should be explicit or remain implicit arises from a “growing perception” that doctors are always the most adept at making rationing decisions. As stated earlier, this is not necessarily a function that ART providers wish to have control over.
115 See Chapter 3, Regulating Practices, Section 3.6, Professional Self-Regulation, for further discussion
Modifying factors for access to treatment are identified as body weight and medical factors that can be alleviated by surgery or treatment. Although it is stated in the consultation document that extremes in body weight can affect ovulation and ovarian stimulation, body weight is not used as a deciding factor (Gillett & Peek, 1997:21). It would appear that this factor has been included in the document to encourage self-surveillance and monitoring by those who wish to access ART and to provide the clinicians with more discretionary power. Shildrick (1997:49) suggests that the capillary processes of power multiply the norms of function/dysfunction and the subject is “made responsible, and thus all the more cautious and manageable, for her own success in obtaining state benefit”. According to Mark Leggett (Business Manager, The Fertility Centre, Christchurch, Interview: 22 June 2000), weight can be used to delay treatment and ensure conformity to the standardised weight range. Women seeking publicly funded ART treatment who are outside the body mass index (BMI) range of 18-32 will be placed on the waiting list but have to demonstrate they are committed to treatment by losing weight. Although body weight is not ‘officially’ a deciding factor, it would appear that it does influence how providers interpret a client’s commitment to treatment and their eventual ‘worthiness’ for accessing treatment. This discretionary power is reinforced by the referral guidelines.
There are factors that limit the success of weight improvement, and in this circumstance it is reasonable to proceed with treatment providing the ovarian response is closely monitored. Treatment should only continue if the response is satisfactory. (Health Funding Authority, 2000a:28)
Although not inevitable, extremes in body weight can have adverse effects on reproduction. However, recent research suggests that some of these problems can be overcome by ART treatment. Wang, Davies, and Norman (2000) maintain that “there is no conclusive evidence that extremes of weight are associated with a low rate of pregnancy in women receiving assisted reproduction treatment.” Although some weight loss or gain may increase the chances of ‘natural’ conception in women with weight related infertility, their ability to lose or gain weight may have been the reason they sought ART treatment in the first place. Although it is claimed that body weight is an influencing factor and not a determining factor in granting access, it would appear that it has been included in the CPAC to further limit the numbers that would qualify for higher points under the “prognosis of conceiving without treatment” criteria. Coney (1999a:24) claims that restrictive criteria on weight effectively excludes women from certain ethnic groups from accessing publicly funded ART procedures because of the tendency for such women to exceed the recommended body mass index (BMI). Similarly, the Human Rights Commission (HRC) argues that
…the factor of body weight could have some implications in relation to indirect discrimination on the basis of race and ethnic origins. Certain ethnic groups in New Zealand have a propensity for either higher or lower than average body weight to height ratios (BMI, body mass index).
(Human Rights Commission, 1997:3)
However, as the CPAC do not use the BMI as a deciding factor for access, it is unlikely that claims of indirect discrimination on the basis of race would be able to be made (Human Rights Commission, 1997:3). John Peek (Clinical Manager/Group Operations Manager, Fertility Associates Auckland) suggests that the weight range is necessary because it eliminates those who have a reduced likelihood of responding ‘efficiently’ to ART treatments. Nevertheless, he recognises that the weight range effectively excludes many Mäori and Pacific Island people.
…Mäori tend to be a lot heavier and therefore they need more drugs to respond and [they are] more likely not to respond to stimulation IVF and at the moment the emphasis is on making the service efficient so we only treat the people who are going to get the highest chance of pregnancy which are the people who are going to respond the most to the drugs. So, you have got a weight range - a BMI of 18-32 which excludes a lot of Mäori and then a lot of Mäori and Pacific Islanders who fall into that are at the top end and they do not respond so well to the drugs.
(John Peek, Interview: 12 July 2000)
Peek claims that it is not “about equity of access but about biological differences that somehow you have to work out” and argued that the resolution would be to provide more funding so that “Mäori people having an IVF cycle should be allowed to spend more on drugs for instance or not have such strict … weight related restrictions” (John Peek, Interview: 12 July 2000). However, Teresa Wall (Senior Analyst, Mäori Health Branch, Ministry of Health, Interview: 24 July 2000) suggests that asking for more money to treat Mäori or Pacific Island people obscures the fact that the criteria are discriminatory. Similarly, Grant Allen (Senior Policy Analyst, Te Puni Kökiri) suggests the use of the BMI scale, even as a modifying factor, implicitly discriminates against Mäori and Pacific Island peoples.
Unfortunately, the BMI is based upon a western profile. … There have been studies that have shown that the density of a Pacific Island person’s body is heavier in general than Europeans. So you may have those problems, I mean the criteria itself is probably a profile for the type of people going through, middle- class, white middle class? (Grant Allen, Interview: 25 July 2000)
Universally formulated policies are blind to differences of race, culture, gender, age, or disability and often maintain rather than challenge social inequality. Such policies often accept the capabilities, values, behaviours, and physiology of the dominant group as the standard or norm and assess all those applying for social assistance against these norms (Young, 1990:173-174). Accordingly, Young (1990:174) maintains that social equality can only be accomplished through the development of certain “group-conscious” policies, which acknowledge the group’s
distinctiveness.116 She argues that the “oppressions of cultural imperialism that stereotype a
group and simultaneously render its own experience invisible can be remedied only by explicit attention to and expression of the group’s specificity” (Young, 1990:174). Consequently, it may be necessary to acknowledge this difference in relation to body weight and establish distinct access criteria for some ethnic groups.117
The ‘objective’ factors are scored on a points system and they include age of the female partner, prognosis of conceiving without treatment, hormone levels, and a history of current smoking in the female partner. In their submission on the consultation document, the HRC claim that the inclusion of age and the “heavy weighting through a relatively narrow range of age bands” appeared to be subjective (1997:4). Gillett and Peek (1997:21) admit that “the rate at which fertility falls with age seems to vary between studies performed in different countries, and on different population groups within large countries such as the United States of America”. While they acknowledge that older women may have a greater need than younger women because of age related infertility (Gillett & Peek, 1997:22), they disregard this argument and go on to state twice in the document that “women who wish to embark on parenthood need to consider their priorities well before 35 years of age” (Gillett & Peek, 1997:6 & 38). This statement appears to be based on a moral judgement by the authors rather than ‘objective’ fact. Similarly, John Peek discusses the emphasis on age in the education kits that Fertility Associates provide to schools.
…the big message we are trying to get across is “Try to plan your family as much as you plan your career …and be aware of the fact that once you are in your late thirties your chance of pregnancy really reduces.”
(John Peek, Interview: 12 July 2000)
The emphasis on women prioritising and planning their reproductive ‘careers’ fails to allow for demographic changes in Aotearoa/New Zealand and life events that may preclude having a family any sooner. Such arguments do not acknowledge that pressure to conform to male orientated career paths and inadequate childcare facilities may impact on decisions about when to have children (Woliver, 1991:486). Similarly, a partner may have some influence on the decision when to have a child or some women may not have access to a willing male sexual partner.
116 Young defines ‘social equality’ as the “full participation and inclusion of everyone in a society’s major
institutions, and the socially supported substantive opportunity for all to develop and exercise their capacities and to realize their choices” (1990:173).
117 See Chapter 6, Addressing Difference: Mäori Infertility and ART, for a discussion of the constraints
Sandra Coney (Executive Director, Women's Health Action Trust) suggests that focusing on personal choice and ‘career planning’ in relation to having a family disregards the influence of social and economic conditions on women’s reproductive choices.
…the other thing we could do is actually provide better social and economic conditions so that women can have children when they are younger. … I think that is discrimination because the way the work force has changed quite rapidly in recent years means that it is very difficult for women to take time out to have children. …to think that somehow women should be thinking at the age of 25 “Oh, if I leave it too much longer I might you know not have enough points when I...” is just bizarre. So, I think there are a lot of things that could be done in social and economic policy to support women in having children when they may prefer to have them at a younger age. (Sandra Coney, Interview: 13 July 2000)
Fertility in women does reduce with age and by the age 45 is almost half that of a 20 year old (Serono Colloquia Australasia, 1997b:6-7). However, these statistics are based on averages and do not take into account the individuality of women’s fertility. Klein, Day, and Redmayne (1996:87) argue that applying information about groups to individuals and using it as criteria for allocating resources can lead to discriminatory and inequitable decisions. They contend that using age as a rationing strategy could lead to an older person with a good prognosis being denied treatment while a younger person with a poor prognosis is offered treatment. The HRC (1997:4) argue that the ‘age of the female partner’ and ‘prognosis of conceiving without treatment’ criteria and the scores associated with them are contradictory, given that age could be a contributing factor to the inability to conceive without treatment. The objective factors give higher points to women who have a poor chance of pregnancy without treatment. Although the consultation document allows that the “chance of pregnancy per month falls as the woman’s age increases” (Gillett & Peek, 1997:21), the CPAC scores reduce as the woman’s age increases and effectively eliminate anyone over the age of 39 from achieving access to publicly funded ART treatment.118 As mentioned earlier, the use of donor oocytes can improve
the likelihood of older women benefiting from ART treatments.
The inclusion of ‘a history of current smoking in the female partner’ in the objective criteria implies that its effect on the ability to conceive is supported by clinical evidence. However, the consultation document states that smoking “seems” to reduce the likelihood of conception and offers no conclusive evidence (Gillett & Peek, 1997:22-23). As the HRC point out, the desire to
118 The current point threshold to access publicly funded ART is 65 points. Using this threshold no
woman over the age of 39 would qualify for public funding, even if she scored the maximum points on the remaining criteria.
eliminate smoking and its harmful effects is commendable but it should be made explicit that this is a social factor based on a moral judgement of a social behaviour rather than evidence- based.
It is recognised that the elimination of smoking is an admirable public health goal. However, factors such as this should be justified on clinical grounds. The language of the report is somewhat hesitant as to the actual known effect of smoking on fertility. Without sound reasoning being provided for the exclusion of smokers it could seem that this is a moral judgment of individuals' social behaviour rather than a logical medical reason such as protecting a child in utero from risks to its health and safety. Perhaps this factor could be better grouped among the social criteria. (Human Rights Commission, 1997)
Although the inclusion of smoking as a restrictive criteria appears to be based on the ‘capacity to benefit’ principle (Klein, et al., 1996:88), it has also been interpreted by one provider as an indication of how deserving of treatment the individual is. Mark Leggett (Business Manager, The Fertility Centre, Christchurch) sees smokers as less deserving of public funds because their habit may be contributing to the condition for which they are seeking treatment.
You could not say if you are a smoker, you cannot get service. That would be stupid. But, if you are a smoker, it reduces the amount of service you can get. Because we can only afford so much and why would we give it to someone who is going to minimise their chances deliberately? So, that makes sense.
(Mark Leggett, Interview: 22 June 2000)
Gillett and Peek (1997:23) argue that smoking does not “significantly impair sperm quality or reduce fertility” in men. However, the American Society for Reproductive Medicine (2001) claims that heavy smoking can increase abnormalities in sperm mobility and shape and may combine with other factors to reduce fertility. The consultation document does not include any acknowledgment of the effect of passive smoke inhalation by female partners of male smokers, which may also contribute to “abnormalities of reproductive function” (American Society for Reproductive Medicine, 2001). This omission highlights the CPAC’s focus on the women’s bodies and behaviour, and emphasises the invisibility of men in both the reproductive process and the disciplinary techniques used to control and normalise procreative behaviour.119
The purpose of the consultation document was to “develop criteria based on a couple’s measurable need and their opportunity to benefit” (Gillett & Peek, 1997:36). According to
119 Disciplinary power operates to control and regulate certain populations through the use of disciplining
techniques. Modern medicine provides an important system of knowledge and related practices, which enable the body to be understood and experienced. Knowledge gained through the ‘clinical gaze’ of medical practitioners and the ‘confessions’ of their patients is used to inform discourses and practices that construct the body and its various parts. Disciplinary power operates within the medical encounter by