5 Apr 2023
Fertility NZ's Submission to Women's Health Strategy
Thank you for the opportunity to have input into the creation of Aotearoa’s first Women’s Health Strategy.
Thank you for the opportunity to have input into the creation of Aotearoa’s first Women’s Health Strategy. We hope this piece of work will bring about some truly meaningful change for women using the health system in Aotearoa. We are particularly heartened to see a focus on Hauora to encompass all areas of physical, emotional and spiritual wellbeing.
This submission is on behalf of Fertility New Zealand Inc (Fertility NZ). Fertility NZ is a nationwide registered charity. Our mission is to walk alongside all people facing fertility challenges. It is our vision that everyone gets the support they need during their fertility experience. We provide this via support groups, information resources and education. In our advocacy work we represent the voice of consumers to decision makers responsible for the laws, guidelines, and funding for these critical services.
We know that one in four kiwis will be impacted by infertility in their lifetime. The wellbeing of our community as they navigate building a family in Aotearoa is our central focus.
Our community members access the fertility and Assisted Human Reproductive Technologies for publicly funded investigations and treatments with the aim of creating a much longed for baby. This includes methods such as IUI (Intra Uterine Insemination), IVF (In Vitro Fertilisation) using an egg and/or sperm donor, a surrogate, or their own gametes.
We would like to acknowledge the 18,000 babies born annually in Australia and NZ using Assisted Reproductive Technologies (1). The Public funding of this treatment has allowed many people to fulfil their human right to create a family. For these individuals and their broader families, they simply would not have been able to naturally conceive these very special whanau members. Privately funded treatment is out of reach for many people and for them public funding is their only means of having a baby.
Following consultation with our clinical advisors and our community, we have identified some key areas of fertility medicine in which women’s care and experience could be improved.
Access/affordability – The cost of private treatment can be prohibitive for many. Access to public funding for specialist consultations, investigations and treatment is often subject to 12month to five year wait times.
The scoring criteria to assess eligibility for funding are outdated and discriminatory. BMI criteria exclude many Māori and Pacifica people – even if weight is not the main cause of their infertility.
The current funding model does not provide funding for same sex male couples, many lesbian couples and those using donors and surrogates. These groups are required to fund their own treatment. This often leads to them seeking cheaper treatment overseas or doing DIY donor insemination at home – without the medical, ethical and legal framework provided in the clinic setting.
This area of medicine also does little to put those from minority cultures at ease.
The common experience of Māori and Pacifica people is that the service and those working in it do not reflect them and their culture. This creates a significant barrier for members of these communities to seek treatment or even investigations into their fertility issues. The inability to conceive a baby is steeped in whakama (shame) in many cultures and talking openly about intercourse and other personal matters in a setting that feels unfamiliar and daunting is enough to stop many people even speaking to a GP about their fertility. We would like to see much more emphasis placed on recognising the diverse cultural needs of those people who may be facing infertility.
Accessibility to treatment is also a very real issue for those living in rural areas. Fertility clinics are established in the main centers, however for those living outside of those areas, simply attending appointments requires lengthy travel. In the lead up to IVF, for example, patients are required to undergo daily transvaginal scans and blood work early in the morning. This is not always possible in some small towns, meaning women have to travel several hours for the tests, while maintaining commitments to work and family. While Zoom technology and the like can mean some appointments can be done online, a lot of it can’t be and that adds a huge emotional, physical and financial burden which is not accommodated for by the health system.
Wait times – in matters of fertility, time is of the essence. Many women report considerable added stress caused by waiting for funding to come through. A women’s natural fertility declines rapidly each year from the age of 32. For women in this group, waiting one to two years, or even five years for unexplained infertility, severely impacts their chances of a successful outcome and adds considerable stress to themselves and their relationships.
Wellbeing not at the center of service provision – Research shows that a diagnosis of infertility is as life impacting as a cancer diagnosis (2).
This makes it a highly stressful experience that manifests itself in feelings of sadness, depression, stress, disappointment, anxiety, frustration and loss of self-confidence (3). The process of IVF, for example, is complex and highly technical with patients injecting themselves with potent drugs at home, several times a day, undergoing daily blood tests and scans and managing the impacts of the side effects of the medication. It is also increasingly commodified, with patients offered a range of "add-ons” to their standard IVF treatment – adding a financial burden.
In our support groups we help 3,000 a year by providing peer support. The most commonly discussed topics include the stress of the process, that they feel “like a number” at the clinics and that there is often time given to explaining the process of IVF, but there is little to no focus on the wellbeing of the patients. This is not to say the clinics are not trying in this area, but they are often juggling many things themselves including increasing workloads and the impact of the Covid 19 pandemic on the overall health system.
The fertility clinics do have counsellors on staff; however, their workload often has to focus on providing the mandatory counselling requirements for Ethic Committee applicants, and other clinic patients can find it difficult to access the counselling support they need in a timely fashion. This means the pastural care often falls to the nursing staff.
There is also concern about the lack of wrap around support in the donor linking area. For those people who use an egg orsperm donor, for the donors themselves and any subsequent offspring, the process of creating relationships between donors and recipients is difficult to navigate and can be incredibly complex. There is no clear pathway for how a donor conceived child can receive support when making the decision to connect with their donor and guidance around how to manage that relationship. This lack of support also applies to the donors themselves.
Oversight- During the course of our advocacy work, Fertility NZ has had cause to seek Ministry input and advice on several areas relating to fertility medicine. We often have questions and suggestions around fertility education, preconception health, information storage, guideline changes, the management of public contracts and more. However, it has become clear that there is no one full-time person or team directly responsible for the oversight of fertility services within the Ministry of Health. We believe that having structured oversight will allow for clearer communication and decision making.
Education: So much more could be done to educate the general population on how to naturally conceive a baby. With the advent of family planning advice, much is taught about how not to get pregnant. While this is important information for secondary school aged people, those at the tertiaryage range are often shocked to learn their main reproductive years will align with study, career establishment and travel. More could be done to education everyone about the threats to reproduction, the most fertile years and ways to identify and plan for things in the family history that might make conceiving difficult.
Assisted reproductive medicine is viewed as an elective service within the heath system. But for those seeking these treatments there’s nothing elective about it – no one chooses to have to make a baby using scientific intervention. Creating a baby in this way is grueling and something that is often compounded by the health system.
We urge you to undertake a full review of how fertility treatment is funded and accessed in Aotearoa. It’s been 19 years since the funding criteria were established under the Human Assisted Reproductive Technologies Act (HART Act2004). Since then, society has rapidly evolved. It’s not just straight, married, New Zealand European couples seeking access to the treatment anymore. We believe the funding criteria needs a full review and increased investment to allow more kiwis to fulfill their family dream.
Please reach out if we can provide any further information.
Madeleine Setchell Chairperson & National President Fertility New Zealand