Politics, law and a lack of sperm: single women and fertility treatment in the Swedish health system

Abstract

In 2016 Swedish law was amended to allow single women to access fertility treatment with donor sperm. In this paper, based on interviews, document analysis and autoethnographic insights, I examine the implementation of this law using human rights approaches, specifically the availability, accessibility, acceptability, and quality framework (AAAQ Framework). While the law extended the scope of reproductive rights, the health system was unprepared. Five years on, women seek care in the private sector or continue to travel abroad due in large part to waiting times which can be up to four years in some regions. The paper also provides a meeting point between anthropology and policy analysis. The law change provides a pathway for analyzing the Swedish health system and political context, particularly the relationships between the private and public sectors and between different regions, and the balance of responsibility between national and regional levels. While many of the challenges are unique to the Swedish context, they also offer lessons for countries which have or are considering expanding access to fertility treatment for single women and other patient groups, thus demonstrating the importance of ethnographic approaches in health policy analysis.

Keywords:

• Fertility
• medically assisted reproduction
• health systems
• policy
• health services

Introduction

In March 2021, the publicly funded university fertility clinic in Malmö, Sweden ran out of donor sperm. This was not only a problem for Malmö, Sweden’s third largest city, but also for much of southern Sweden. Over two-thirds of the clinic’s patients travel to Malmö because of long queues for publicly funded treatment in other Swedish regions, notoriously Västra Götaland, the region where Gothenburg, Sweden’s second largest city is located; there waiting times were three to four years. The sperm problem was even more absurd considering geography: Malmö lies over the Öresund Bridge from Denmark, a country which is an international fertility destination and exports sperm (Adrian and Kroløkke 2018). Exactly five years after single women were granted the right to access fertility treatment in Sweden, many of them could not: the only publicly funded clinic for much of southern Sweden was without sperm.

Since 2016 single women in Sweden to have been able to legally, if not always practically, access medically assisted reproduction (MAR) treatment with donor sperm, most commonly intrauterine insemination (IUI) and in vitro fertilization (IVF).¹ Those under the age of 40 who do not already have a child have the right to six publicly funded rounds of IUI or three rounds of IVF, or a combination of the two.² In this paper I examine the implementation of this law using human rights approaches, specifically the availability, accessibility, acceptability, and quality framework (AAAQ Framework) (Kähler et al. 2017; Hunt 2016). Availability addresses the sufficient quantity, supply and functionality of services, including the availability of medical professionals. Accessibility refers to the physical access, affordability and access to information. Acceptable services are uphold principles of non-discrimination and equality. Quality of care is assessed as compliance with evidence-based applicable guidelines and medically appropriate, up-to-date standards of care. In this case, the AAAQ framework enables an analysis of how, while the law extended the scope of reproductive rights, the health system was unprepared. Five years on, women seek care in the private sector or continue to travel abroad due in large part to waiting times. While many of the challenges are unique to the Swedish context, they also offer lessons for countries which have or are considering expanding access to fertility treatment for single women, such as France and Norway which saw law changes in 2019 and 2020, respectively.

Additionally, I use this case to examine aspects of the health sector which go beyond reproductive health care: the law change necessitated a series of policy changes which, upon ethnographic investigation, highlight various challenges in Swedish healthcare organization, particularly the relationships between the private and public sectors and between different regions, and the balance of responsibility between national and regional levels.

In the sections that follow I describe my methodological approaches to researching the 2016 law change. Then, drawing upon media coverage and parliamentary documents, I reconstruct the background to and implementation of the law and subsequent policy frameworks. Finally, I turn to the experiences of women seeking care, describing both the treatment-seeking pathways and their overall assessment of care.

Materials and methods

There is a long tradition of studying reproductive health in the social sciences and humanities, including fertility, infertility and assisted reproductive technologies (Inhorn 1994; Franklin 1997; Becker 2000; Ross and Moll 2020). Research on single women who access MAR has focussed on changes in family structure, motivations of women, attitudes to the sperm donor, technology in relation to society and stigma and the longer-term impact of sperm donation on mothers and children (Graham 2018; Golombok et al. 2016; Jadva et al. 209; Nelson and Hertz 2017; Tober 2019). Much of this research uses terms such as ‘single mothers by choice’, or ‘solo mums’ which are imperfect, not least because the extent to which women choose to be single varies by individual. Instead I use ‘single mother by MAR’ because it is descriptive of the process.

The starting point for this paper is the 2016 law change. In line with Gupta and Ferguson (1997), I conceive of the fieldsite as a political location not necessarily tied to a single physical space. That is, it was not Sweden or a clinic that was the fieldsite. Rather, the law change, and the subsequent policy frameworks it necessitated, was my fieldsite. While ethnography is often referred to as ‘immersion’ in a specific culture or society, for me this was immersion in the narrative, or genealogy, of the law change and its implementation.

Methods

I interviewed 14 single women in Sweden who had undergone IUI or IVF, were in treatment or considering it during the five-year period after the law change in 2016. In Sweden, a single woman (ensamstående kvinna) is defined as a woman who is neither married nor has a registered partner, nor is in a cohabiting couple (sambo). The women had experience of publicly funded treatment (13), private treatment in Sweden (3) and/or treatment at clinics abroad (4). They had sought treatment in six different Swedish regions: (Dalarna, Norrbotten, Skåne, Stockholm, Uppsala och Västra Götaland). The women were between 30 and 43 years old at the time of the interviews and largely self-identified as well-educated and economic stable, demographically reflecting other studies on single women and MAR in the Swedish context (Volgsten and Schmidt 2021). The interviews focused on fertility treatments, but the women who had had children by MAR during the study period (4) also discussed pre-natal care and delivery. Interviewees were recruited through Femmis, an association for women who are in different stages of seeking MAR with the use of donated gametes and/or embryos. Femmis advertised the study via their website, Facebook and Instagram. The interviews were carried out in 2020 and 2021 and all but one was done by telephone or Zoom. This was primarily due to the Covid-19 pandemic, but also because the women came from across Sweden. The women had an opportunity to review and comment upon the manuscript before submission.

I read through parliamentary documents, including records of proceedings, dating back to the now rescinded 1984 Law on Insemination (Lag (1984:1140) om insemination). This documentation is publicly available on the Swedish Parliament’s website. Using the Retriever Media Database, I reviewed Swedish news media coverage on the topic of single mothers by MAR. The search string ensamstående insemination (single insemination) produced 3028 hits between 1982 and March 2021 and the term ensamstående assisterad befruktning (single assisted reproduction) 3192 between 1995 and March 2021, although there was considerable overlap between the two results. The media coverage primarily consists of a mix of ‘human interest’ stories about single mothers by MAR, and updates on the various legal and political debates, including the 2016 law change and its implementation.

Finally, my descriptions of the care journeys also draw upon own autoethnographic fieldnotes, as I was undergoing treatment as a single woman at the time – an approach used in several studies of single mothers by MAR (Holmes 2018; Bravo-Moreno 2019). This experience allowed me to provide a thicker description of the process and to ask slightly more specific questions than someone who did not have the same sort of insider experience. To maintain confidentiality, I have chosen not to name clinics and have changed or simplified some details of patient journeys; I have also included my experiences as one of the interviewees instead of discussing them as separate material. The research was approved by the Swedish Ethical Review Authority (Dnr 2019-04633).

Background to the Swedish law change

The explicit question of single women and MAR was initially raised when the first laws around MAR were introduced. Prior to the 1984 insemination law, single women were not formally banned from accessing MAR, but in practice public clinics only offered treatment to heterosexual couples with some private doctors treating single women (Riksdagen 2016:77; TT 1983). The 1984 insemination law explicitly limited services to heterosexual couples. In the following years, several attempts were made to amend the law to allow access for single women (Riksdagen 2016). The issue gained further traction in 2005 when lesbians in a partnership were granted to right to MAR, after which the question of single women was raised repeatedly in parliament and in the media by civil society organisations such as the Swedish Association for Sexuality Education (RFSU) and Femmis (Ljungros 2015; Regnér 2008).However, efforts to change the law were hindered in part because three of the parties in support of it were in a political coalition with a fourth party that was against it (Carp 2012).

Before the law was changed, women would go outside of Sweden, often Denmark, so that ‘going to Denmark’ was almost a euphemism in popular culture. While there were no exact figures, a single clinic in Denmark, known for treating single women and coupled lesbians, estimated they had treated 712 single Swedish women in 2010, up from 388 in 2006, and parliamentarians discussed figures ranging from 500 to 1000 (Riksdagen 2016:82; Smer 2013:212).

2016 law change

In 2012 a majority in parliament voted to allow single women access to MAR and asked the government to put forward a bill ‘as soon as possible’ (Smer 2013, 26, 221–222). After a long consultation and drafting process on the 13^th of January 2016 the Swedish Parliament voted on the measure, which went into effect on the 1^st of April later that year (Ohlsson and Westerholm 2015). Of the eight political parties in parliament, only two voted against it.

A key difference between Sweden and other countries is that the Swedish debate around MAR has rarely been explicitly religious, either generally or in relation to single women as it has been in other countries (Inhorn 2020; Gunnarsson Payne and Korolczuk 2016). With the exception of surrogacy, there is very little questioning of the technologies themselves. Rather the debates have revolved around the specifics, such as access, commercialisation and donor anonymity. This likely stems from a long tradition of trusting technological solutions to social and medical problems (Wennberg et al. 2016; Gunnarsson Payne and Korolczuk 2016). Moreover, Swedish society has become increasingly open to different types of family constellations in the past decades (Gunnarsson Payne and Korolczuk 2016).

Rather than using religious arguments, the political opposition invoked the United Nation’s Convention on the Rights of the Child, although Sweden had not yet ratified it at the time (Riksdagen 2016). In parliamentary debates they argued, in line with the Convention, that children have the right to grow up knowing their parents and stressed the importance of two parents (Riksdagen 2016, 71–73, 76). Arguments in favour of the law change rested on the principles of equal rights under the law and the ability to control the process on ‘Swedish terms’ (Riksdagen 2016, 73–89). As a representative from the Left Party (Vänsterpartiet) noted, because fertility treatments were not legal in Sweden, women were forced to go abroad or to do it ‘in secret’ which could create other problems (Riksdagen 2016, 80). For example, Sweden has guaranteed non-anonymous donation since 1985, but many women were seeking care in countries which allowed anonymous donation. Proponents also noted that women would be evaluated for their ability to provide a good home, in the same way that was done for couples, and that by legalising the process, the children and families would be more ‘legitimate’ (Riksdagen 2016, 78, 84). Modernity was also invoked to push for the law change (Riksdagen 2016, 80–81; 83), with the then leader of the Moderate party calling it ‘one of several important steps towards a modern family policy’ (Savage 2016). The representative from the Left Party stated that ‘in 2016 it is high time to understand that families look differently today than they did decades ago,’ and stressed that ‘love, respect … and care’ … was ‘crucial’, not the ‘nuclear family’ norm in and of itself (Riksdagen 2016, 73).

Implementation

Although the law change took effect on the 1^st of April 2016, its implementation required a series of changes to policy and practice in the health system which were delayed. As of September 2016, no treatment had started in the public sector (Palmström 2016). A mapping by Svenska Dagbladet, a national newspaper, published in December 2016 showed that only 14 out of 21 regions were offering publicly financed treatment. Stockholm, the capital region, did not start until 2017 (Bengtsson 2016).

Part of this has to do with the organization of the Swedish health system, which is not a single system, but rather 21 systems, with each region responsible for health services. While the law had been changed at the national level, the details were formally up to the individual regions, such as prices, limits on treatment, the psychosocial and medical assessment, and whether or not private clinics would be contracted to deliver publicly-funded services. Many of the regions chose to wait on guidelines from the National Board of Health and Welfare (Socialstyrelsen) and the Swedish Association of Local Authorities and Regions (SKR, previously known as SKL), an umbrella organization for local and regional governments, before developing their own (Bengtsson 2016; Sydsvenskan 2016). In the end all regions decided on the same prices and number of publicly funded rounds of treatment, although other guidelines – such as limits on Body Mass Index (BMI) differ by region.

The national government did not provide extra funding to implement the law change, so it was also up to individual regions to decide whether or not to reallocate funding, which further delayed the process (Teglund 2016). For example, while Region Skåne, which includes Malmö, allocated extra funding. Västra Götaland, which includes Gothenburg, did not (Hagström 2020a; Zillén 2020a). At the same time there was frustration from civil society groups that regions had known the law change was coming since 2012 and both the national and regional governments could have been better prepared with their guidelines and policies (Linde and Juno 2017).

A resultant problem has been long waiting times. While the age limit for publicly funded treatment is 40, in 2020 it was reported that Gothenburg did not take women over 37 into the queue and had a waiting time of 3 years, an improvement over the previous 4 years and limit of 36. In 2020 the director of the university fertility clinic in Malmö said that there was ‘no point’ for a 38-year-old woman to join the queue because she would not be able to go through the assessments and treatment before turning 40 (Hagström 2020a; Zillén 2020a; Zillén 2020b).

The waiting times are further complicated by the Patient Act (patientlagen), under which women can choose care in any region: this means that some women in regions with longer queues have gone to regions with shorter queues, in turn increasing queue times in regions that originally had shorter queues. For example, in September 2020, the director of the university fertility clinic in Malmö told the Sydsvenskan newspaper that 70% of their queue consisted of people from other regions, and that Gothenburg was actively sending their patients to Skåne; this led to headlines about Gothenburgers commandeering Scanian sperm (Zillén 2020a).

The long waiting times are also tied to a chronic sperm shortage, which pre-dates the law change (Ljungros 2015; Bengtsson 2016; SVT 2019; Hagström 2020a SVT 2019). Additionally, sperm banked before the law change could not be used, because donors had not consented to single women using it. While most donors were likely willing to consent – and at least one region reported an increased in donors after the law change – few clinics allocated the resources to contacting them (Clausen 2016; Palmström 2016).

Moreover, legally Swedish public clinics have the option of purchasing sperm from Denmark, as many private clinics do, but prefer to operate their own banks (in part to have control over the donor vetting process). Since 2019 private clinics have been able to build up their own banks, which the directors of the university clinics in Malmö and Gothenburg have suggested is drawing away donors from the public sector, although private clinics have denied this, and some private clinics continue to buy sperm from Denmark (Hagström 2020a; Zillén 2020a). When it ran out of sperm in 2021 the university clinic in Malmö partially blamed the Covid-19 pandemic, suggesting that men were hesitant to come to the hospital during the pandemic because of the contagion risk (Lundgren 2021). But placing blame on the pandemic deflects attention from a larger issue: despite a long-standing sperm shortage, there was only one donation centre in a region with 1.4 million inhabitants and potential donors would have to travel up to 2 hours on public transit to reach Malmö. Clearly, the problem was not only about the number of donors; it is also about increasing resources and capacity to recruit and handle donors and increasing the number of health professionals to treat patients (Palmström 2016; Bengtsson 2016; Hagström 2020a; Ljungros 2015).

An additional problem was that until a subsequent law change in January 2019, private clinics were not allowed to carry out IVF with donor sperm (Nilsson 2019). Private clinics could provide IVF to heterosexual couples who were using their own gametes, but not those using donated sperm (although in both IUI and IVF clinics were responsible for procurement of sperm). For single women this also meant that private clinics could only offer IUI to single women or lesbian couples, not IVF. If they needed IVF, waiting in a queue for public treatment or travelling abroad were their only options.

The waiting times have been framed as a class issue, by politicians, doctors and by several of the women in my study, in that not everyone can afford private care (Johansen 2021; Zillén 2020a). Under EU law, in some cases treatment abroad can be covered by the Swedish health system. However, there are also risks during treatment by distance, which the law change was intended to mitigate, relating to fragmentation of care and follow-up (Nordström 2017).

The process and care pathways

Having discussed the law change ‘on paper’, in the next section I describe implementation from the women’s perspectives, including the processes of joining the queue, going through assessments and the procedures and their overall reflections on the process. Although much of this process is shared by all patient groups, not only single women, it is necessary to describe in detail for several reasons. First, the overall aim of this paper is to examine the implementation of the law change using human rights approaches, specifically the AAAQ Framework. A detailed description of the process is required for analyzing the challenges of implementation.

Second, single women in Sweden are fully dependent on fertility clinics for MAR. Ordering sperm online for home insemination is not legal in Sweden and IUI (and IVF) can only be carried out in authorized healthcare facilities. Moreover, since 2018 Danish sperm banks are only allowed to ship donor sperm to authorized healthcare facilities, not to individuals. While everyone’s story is unique, many touched upon the long waiting times and, as I describe, delays at all stages of the process. These delays are even more frustrating when waiting on a fertility clinic is one’s only option.

Finally, a key finding was that women were never provided with an overview of the process and often stumbled around, at times receiving unclear information from clinics and national bodies. For this reason, I describe the process in detail so that this paper is not only of use to other researchers, but also to patients and civil society organisations, demonstrating my commitment to engaged anthropology.

Joining the queue

To join the queue, in some regions women can send a self-referral to the fertility clinic, in other regions they need to be referred by a gynecologist. This is the first possibility for administrative error: one woman’s regular gynecologist sent a referral to a fertility clinic, but when she had not received any information about next steps, she called and found out that they had lost the letter and, in turn, she had lost a month in the queue.

However, not everyone joins the queue immediately or at all. Two women in my study were in their late-30s when the law changed and were advised by their region to go straight into the private clinic or abroad because, as noted above, they would not be treated before turning 40 (private clinics may treat women over 40). Another sought private treatment in Denmark while waiting in the queue in her region. A fourth already had a child from a previous relationship and was not eligible for publicly funded treatment.

The assessment

Before IUI or IVF is undertaken, women go through a series of psychosocial and medical assessments and to be approved for treatment the procedure should have what is referred to in the guidelines as a ‘reasonable’ chance of succeeding (Lind 2020). Fertility treatment is partially covered by the care agreement (‘vårdgaranti’), which guarantees an appointment with a specialist within three months of referral: in most regions, the care agreement is valid for the assessment process but not the treatment (SKL 2016). This means the time from putting in a referral to the initial psychosocial assessment should be less than three months and the ‘real’ queue starts after the assessments. The assessments are required in both publicly and privately funded care.

During the psychosocial assessment the clinic attempts to determine whether the child will grow up in ‘good circumstance’, evaluating factors such as the women’s mental and physical health, financial and employment situation and social network (Lind 2020; Socialstyrelsen 2016). This is usually done by a psychologist or a kurator, a position which is a mix between a psychologist and a social worker. Although couples who use donated gametes also go through a social assessment, single women’s assessment focusses more on their social network and the challenges of single parenthood (Olevik 2020).

The social assessment is one of the more debated aspects of the process, as patients and civil society groups have raised concerns over the transparency of decision-making and clinic staff do not always feel they have enough time or information to make an informed decision (Dahlqvist 2020; Lind 2020). Most women in my study had a positive or neutral experience and described the conversation as a positive opportunity to ask questions and discuss their thoughts and feelings around the process. The best conversations were solution-­focused, where the kurator guided the women though different scenarios and provided support. Others experienced the process as demanding and invasive:

The kurator was terrible. I cried the whole way home. It was like she didn’t think women should do this at all, on their own. And you can’t question them, you have to just take it – because they’re the ones who decide. I felt like she used it an excuse to dig around my private life (Interview 7).

It gave me a chance to reflect over certain questions, it was more of a conversation than an interview … it gave me a good perspective, a way to think through things in a different kind of way. But before I felt a bit like I was being judged without knowing what it was about [what the criteria were] and I wanted to know more about the point. It’s a pretty vulnerable position [to be in] (Interview 8).

After the psychosocial assessment, the medical assessment includes a series of blood tests and physical examinations to evaluate fertility. If issues are identified – such as endometriosis, polycystic ovarian syndrome, or fibroid tumors – the start of MAR can be further delayed if medicine or surgery is recommended.

After the assessments, the ‘real’ queue begins, and waiting times differed immensely: I heard stories of women waiting between four weeks to four years, depending on their region and when they joined the queue. In some regions, such as Stockholm, the regional government has agreements with private clinics to deliver subsidised care and women have a choice of clinic. This system of private contracting is common in the health system at large, but it is somewhat controversial mainly because private clinics can keep the profit from public contracts which – in some cases – can lead to cost-cutting which negatively affects care (Ramesh 2012). In other regions, such as Skåne, there is only one clinic providing public care. While women can choose care in any region, due to a shortage of sperm in Stockholm, Region Stockholm stopped taking patients from other regions in 2021 (Karolinska Universistetssjukhuset 2021; Region Stockholm 2021). Conversely, as mentioned, part of the problem with a lack of sperm in Skåne was due to patients coming from Västra Götaland. Other regions do not have public fertility clinics and women must travel across regional borders.

Coordination meetings

Once a woman is ‘approved’ for treatment and makes it to the front of the queue, she is called for a coordination meeting. A nurse or midwife goes over the legal background to the treatment, and the woman signs a paper attesting that she is single. She is also given a patient information folder with a description of the proceedure and her protocol: which type of treatment and medicines she will be taking. Organisational issues can also arise during the coordination meeting:

The clinic called to set up an appointment to go over the injections, and also said they wanted to do another exam. But then they only went over the injections and I was surprised. You have so few tries, so it’s important that everything goes right. It seemed like they missed things sometimes, the nurses. And then they were surprised when I said I was supposed to have an exam, and they were like, ok, let me talk to the doctor. [It’s] important that I have control, so that I don’t miss anything (Interview 8).

The medicines need to be picked up before starting a cycle, which also requires planning. Some fertility medications need to be refrigerated, not all pharmacies carry all medicines and pharmacies – even at some university hospitals – close early on Saturdays and do not open until Monday morning. It is possible to order medicine from the warehouse into a local pharmacy, but this can take up to a week.

During the coordination meeting, the women and care team discuss donor characteristics. Unlike other countries, in which women spend time going through donor profiles, in Sweden it is the doctor who chooses the sperm. The (non)choice of sperm donor goes back to managing the process ‘on Swedish terms’. The sperm donor is ‘open’ which means when the child reaches a certain level of maturity, typically 18 years of age, they can find out his identity. The doctor chooses a donor based on characteristics such as eye colour, hair colour, race/ethnicity and height, with the general aim of matching the donor to the woman and her family, based on the idea that it is important for the child to look like its family.

The beginning of a cycle

A typical cycle begins when a woman gets her period and contacts the clinic to let them know and ideally, she will be able to start treatment, depending on the protocol and type of treatment. Under national recommendations, the woman has 24 months to complete treatment unless otherwise agreed. However, treatment can be delayed in many cases, for example if they are full, run out of sperm or if there are issues with test results. Clinics also take breaks, often around Christmas or during the summer:

… I did IVF in September and thought I would get in another [round] before Christmas. But no, it took time, they were fully-booked, they were closed for Christmas, they had loaned their doctors out to intensive care [because of Covid-19] … I was very unsure when I’d get to start again (Interview 7).

Another woman described being denied care repeatedly. The first two times had to with miscommunication around blood test results which delayed the process by seven months. She was then denied treatment for a further nine months because of a sequence of events: the clinic was full and there were not enough staff available to carry out the procedures. This was followed by a lack of donor sperm and then the clinic shut down temporarily when it moved into a new facility. After these delays, she turned to the private sector even though she had the right to publicly funded care.

If treatment can start, the women begins with pills and/or injectables on day 1–3 of her cycle, depending on the clinic and protocol, and she will visit the clinic several times during her cycle for monitoring ultrasounds. A typical cycle can present logistical challenges because the scheduling of both monitoring appointments and the procedures – IUI or IVF – can be unpredictable. One woman mentioned getting the night train to Copenhagen to make an early appointment and another noted how it can be difficult to combine trips at short notice with work:

I hadn’t planned to tell my boss, but it got complicated coming up with reasonable explanations for why I needed time off at short notice. It’s fine once or twice, but not when it’s repeatedly (Interview 6).

Several women lived in northern Sweden, parts of which are extremely remote. In these cases, they had monitoring ultrasounds locally, then travelled to the fertility clinic for the actual treatment. This also required coordination and planning:

The communication between [the fertility clinic] and my gynecologist was so-so, which delayed the process. They talked to each other but sometimes forgot to communicate with me. I read about some things in my medical records, but sometimes I had to call them. I would get the ultrasound at home, they faxed the results to [the fertility clinic], who called me in the afternoon with the results. But it was difficult to be available in the afternoon to take the call from the doctor because of work meetings (Interview 6).

The logistics are even more complicated when an international journey is required. None of the women in my study travelled further afield than Finland or Denmark, and Denmark is hardly considered foreign for reproductive travel (see Adrian and Kroløkke 2018:123). However, several news articles have focussed on women who have travelled further, for instance to Spain, the Baltics or Russia, and even crossing the Öresund Bridge to Denmark became more complicated (but possible) during the Covid-19 pandemic.

Overall experiences of care

In general, women had good experiences with health care staff throughout the process, although this differed by region and clinic and individual healthcare providers could be unfriendly. For the most part, women did not feel treated differently than coupled patients, although most had been given material that reinforced a heterosexual two-parent norm at least once, and one was asked for her husband’s ID when she went in for egg retrieval; another woman had an meeting with a healthcare professional who expressed homophobic views.

Many women had spoken to friends or found information via Femmis or various online groups. However, the details of the process differ by region and some of the policies have also changed since 2016, for example that private clinics can do IVF with donated sperm. Care can be fragmented, and a woman may need to coordinate between multiple clinics. For these reasons, all women wanted more information over the process of seeking treatment, with a flow chart of the entire process, from putting in the referral to follow-up treatment.

I was lacking information during the whole process. You need to know more, like ‘Step 1, Step 2, Step 3.’ You really have to google and root around to get information. Then you’re alone, and it’s such a large process. I think that would reassuring for women to have an [overview], like first you book an appointment, there’s a standard protocol they follow, what it costs – even if there aren’t any costs (Interview 1)

.

These questions on process are further exemplified by a woman who was told right after the law change that she was too old to join the queue, so:

I started to call around. It was really hard to find information. No one knew anything. Different regions had different rules. I called around, tried to find out if it was the same rules in other regions so that I could get into the queue in a different region. And I was working a lot then and I shared an office, and I didn’t want to be making these calls when my office mate was there, but they only have specific times when you can talk to someone. …So, one thing at a time I started to piece things together…

… It was also hard to get an appointment at the gynecologist in my town. There was a queue, then the private clinic wasn’t taking new patients. But then I got into a private gynecologist in a neighbouring town. And the doctor said, off the cuff, you know that you can be reimbursed by the Swedish Social Insurance Agency (Försäkringskassan) for treatment in the EU.

So, then I called a private clinic in Copenhagen and they said, ‘sure you can come next week.’ I did the [medical and psychosocial] assessments in Sweden, then the treatment in Copenhagen.

There was no problem with the treatment, the harder part was before, getting the information, getting appointments and figuring out the categories of people I needed to meet with. And with the assessments, I called the Swedish Social Insurance Agency (Försäkringskassan) to find out who I needed to meet – a doctor or psychologist. And they couldn’t tell me. No one could give me an answer about anything. I got contradictory answers or no answer…. (Interview 5).

The irony of this lack of information and coordination was not lost on the women: most women who have a child on their own are very determined and organised. Yet many still found the process of coordinating their own care frustrating, not least because it is the health system’s responsibility, and ‘when you’re tired or sick, it’s hard to be the one who coordinates your care (Interview 5)’.

Discussion and conclusions

Examining the implementation of the 2016 law change at the five-year mark gives a mixed picture on the right to MAR in practice versus on paper. At the time, the law was seen as a modernisation of family policies and a step toward equality and equity in care; but five years later it was clear that changing the law was not enough: equally important was ensuring the health system was given the resources to implement the legislation.

Returning to the AAAQ Framework, women’s experience of care, including the assessments, depends largely on the individual clinic and healthcare provider; however there are some unifying themes in their experiences. No woman questioned the quality of care. Even if an individual doctor did not have the world’s best ‘bedside manner’, they were knowledgeable and the women experienced care as up-to-date and medically appropriate. Care was also largely acceptable. Except for the psychosocial assessment, the fact they were single rarely came up in conversation with health care staff.

The larger problems fall under accessibility and availability. Accessibility in this case has to do with physical space and access to information. Women living in more rural parts of Sweden were required to travel to fertility clinics in cities or outside their region. Access to information over the whole process was missing; partly this has to do with how different regions have different routines, which have been in flux since the law change. For some women treatment was not available or was highly restricted. The most obvious example of this are the extended waiting times that push women into the private sector or abroad. Availability also speaks to poor coordination. Some women expressed frustration at not only managing the logistics but, at times, keeping on top of the clinics who lost papers, or failed to communicate test results. Yet, because of a lack of information, it was challenging to coordinate their own care.

MAR offers a pathway for examining the wider health system in Sweden. Policy implementation is a process involving active decisions and active non-decisions. These decisions exist in a complicated web of politics, social norms, government, medical technologies and the lives of patients. For example, that the law change took so long was partly because three parties who supported it were in a coalition government with a fourth that did not. This case also highlights how different levels of government have different responsibilities which do not always work out in practice: The national government and parliament make decisions that the regions are responsible for implementing, but different regions have different views on how resources should be allocated and how the law should be applied. In this case, some regions increased capacity while others did not. There are also questions around contracting: for instance, Stockholm contracts with the private sector to deliver publicly funded treatment; Västra Götaland could legally do the same, but instead sends patients to Skåne, driving up waiting times there. I do not suggest that contracting to the private sector is an obvious choice – it can cause other problems, and many – myself included – are ideologically opposed to it. That is, there is a concern from the social democratic and other left-wing perspectives in Sweden that privatization is slowly eroding the health system. However, several media commentators and women in my study, have expressed unease that public clinics have too many patients when private clinics have capacity, and Swedish regions have the option of using public funding to pay for private care (Johansen 2021; Zillén 2020a). A stronger level of national coordination, including a national sperm bank, could address these problems that are, ironically, created by the health and political systems (Hagström 2020a; Johansen 2021; Linander 2021; Zillén 2020a).

Moreover, in a fragmented system, blame and responsibility can easily be passed to others (Zaremba 2013). This is why the chronic sperm shortage was attributed to a diffuse set of actors: the national government that did not give extra funding to implement the law change, the regions that did not allocate funding for recruiting and managing donors, the clinics that have poor routines for recruiting donors or do not want to buy sperm from Denmark, men who do not want to donate or donate to private clinics (instead of public ones), patients from other regions who ‘take’ sperm, and even Covid-19 which scared donors away. When blame is assigned to everyone, responsibility for fixing the problem is similarly passed to others, and it is the patients who are left dealing with the ramifications of the problem, without having the ability to fix it.

Overall, this paper presents a meeting point between anthropology and health policy analysis, demonstrating the value of ethnographic approaches for examining health policy implementation and the complicated webs of law, guidelines, and social and medical norms which women must navigate. In doing so, it advocates for an engaged anthropology which can serve as a basis for contributing to health policy implementation and improving patient experiences.

Ethical Approval

The research was approved by the Swedish Ethical Review Authority (Dnr 2019-04633).

Acknowledgements

I am also grateful to Femmis for their assistance in recruiting interview participants.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

This research was funded by the Swedish Association for Sexuality Education (RFSU)’s Ottarfonden.

Notes

1 The term asssisted reproductive technology (ART) refers to technologies like IVF or ­intracytoplasmic sperm injection (ICSI). Medically assisted reproduction (MAR) is a broader term which also includes medically assisted cycles or insemination

2 In the public sector the costs of the visits and medicine are capped at 3 500 SEK (US$413) per calendar year. In the private sector, a round of IVF is around 45 000 – 50 000 SEK (US$5158 - US$5757) but medicine costs are subsidized and capped at 2 350 SEK (US$278) per calendar year (amounts from 2020).