'The Real Cost of IVF' event organised by Progress Educational Trust (PET), despite its an ambiguous title, had a very specific purpose: to acknowledge, discuss, and to raise awareness of the emotional and psychological price paid by people who undergo fertility treatment.
The event was held at the at the Royal College of Obstetricians and Gynaecologists (RCOG), where a packed lecture theatre was welcomed by PET's Director Sarah Norcross, followed by Sally Cheshire, Chair of Human Fertilisation and Embryology Authority (HFEA) and the chair for the evening's discussions.
Cheshire – touching on her own experience of fertility treatment – introduced the issues of financial costs of fertility treatments including IVF, provision of these treatments from the NHS, fair access to funding for all, provision of evidence-based treatments and importantly, the issues of emotional and psychological costs of IVF and the benefits from receiving the right level of emotional support all along the way.
Each speaker gave a short presentation and then the panel answered audience questions.
The first speaker was Professor Lesley Regan, President of the RCOG, a leading obstetrician and miscarriage expert, who reported having seen many patients saddened by their inability to conceive naturally. Her talk drew from the recent RCOG impact publication 'Multiple pregnancy following assisted conception', as well as the premature birth of her own (naturally conceived) twin daughters, which she described as 'the most humbling experience of her life'.
The NHS currently spends £8 billion annually on postpartum mental health. Professor Regan said she believed that the scale of the problem can be reduced, not just for economy's sake, but for the emotional wellbeing of women, families and society. Reducing multiple births is one of the measures that could help. She highlighted the well-documented risks of multiple pregnancy and stressed the role of physicians in educating patients about risk and supporting informed decision-making to minimise added stress and anxiety during pregnancy.
The HFEA, in conjunction with IVF clinics, professional bodies and patient groups, developed a policy to reduce multiple birth rates in the UK. Since 2009, a steady increase in elective single embryo transfers (eSET) has resulted in better IVF success rates. Professor Regan highlighted that for the good results to continue, provision of IVF through the NHS is the single most important factor for acceptance of eSET among patients and practitioners.
The second speaker, Jacky Boivin, is professor of health psychology at the University of Cardiff. She asserted that most individuals and couples hold a strong wish for children, and that the importance of this desire should be at the forefront of all decision-making in the field, including decisions about funding.
Professor Boivin talked the audience through the emotional effects of childlessness and their link to the unfulfilled child wish, to physical aspects (for example, endometriosis), and to the roller-coaster of emotion in constantly awaiting test results or going through failed attempts. To understand these implications, Professor Boivin compared women undergoing IVF with untreated women or with the same group between treatment cycles. Data from such comparisons showed that women who undergo a cycle of IVF may be more stressed and experience physical discomfort due to the treatment itself. But generally, they are optimistic and in higher spirits because they feel that they are doing something to achieve their goal of parenthood.
Professor Boivin said 'IVF gives people hope', and that even when individuals are predicted a low success rate for their fertility treatment, they tend to be optimistic about their chance of success. Interestingly, this over-optimism is correlated with higher IVF costs, as hopefulness increases when people pay more for fertility treatment.
What happens when this optimism is shattered by a lack of pregnancy after a costly treatment? Danish data comparing fertility patients with people who did not undergo IVF showed a greater risk of marital breakdown, greater mental health problems and suicide among the group that received unsuccessful treatment. Professor Boivin concludes that these outcomes are much more significant than the financial cost of IVF.
The next speaker, Dr Rebecca Brown, a research fellow at the University of Oxford's Uehiro Centre for Practical Ethics, interpreted the subject from a philosophical perspective relating to healthcare policy and health promotion. Dr Brown said that subfertility can affect people who appear to be healthy, which makes it difficult to place within the paradigm of biomedical disease. She acknowledged that the NHS has finite resources, and for each different condition and disease to receive a fair slice, healthcare has to be rationed carefully.
IVF has been a wonderful solution, but Dr Brown argued that by considering it the gold standard, we bypass other options which could help reduce suffering, including preventative approaches and the need to fight the stigma attached to childlessness, especially in low-income countries. She finished by saying that an open discussion is needed to identify and promote other ways to alleviate the burden of subfertility.
The final speaker was Jessica Hepburn, a former patient and one of the leading voices on fertility issues and assisted conception. Hepburn summarised her IVF experience, as referenced in her autobiographical books 'The Pursuit of Motherhood' and '21 Miles: Swimming in search of the meaning of motherhood'.
Hepburn detailed the financial cost of eleven rounds of IVF, as well as the heavy burden of ultimately not becoming a mother. Despite her personal experience, Hepburn is a strong supporter of IVF, acknowledging that it helps many people to achieve parenthood; but she also stressed that it does not work every time for everyone.
For Hepburn, the emotional aspect of failed IVF and infertility has had a soul-destroying effect on self-esteem and relationships with family, friends and colleagues. She discussed how society at large is unaware of the extent of this pain because people with infertility remain secretive about it, for many reasons including stigma and fear of judgment.
She expressed her disagreement with CCG cuts to fertility services, saying that results in the NHS spending more in other areas. The lack of NHS funded cycles encourages patients to seek private or overseas treatment and are more likely to end up with a multiple pregnancy, requiring more expensive NHS care during pregnancy and possibly over the lifetimes of the children. Additionally, the mental health costs resulting from failed IVF or being denied the opportunity of treatment will also be borne by NHS funds.
Hepburn finished by saying that nature is not a feminist and that although the life expectancy has increased, the age of menopause has not changed. She read an excerpt from her book and urged younger generations not to leave having a family too late.
The floor was opened to audience comments and questions. Attendee participation revealed diverse backgrounds and interests, including fertility experts, fertility patients, academics and researchers, NHS officials and medics, students, relevant charities representatives and people from the wider public.
Among the issues raised was whether the IVF-linked suffering is one of the results of the lack of emotional support. Are men considered, when this support is discussed? The latter question was answered by Cheshire who reassured that provision for men's mental health has concerned the HFEA and measures are on the way. Hepburn added that people do not always agree to counselling.
Another very important point that was raised was about the suitability of IVF in resolving infertility and combined to this whether new add-on treatments offer a real benefit, or whether patients felt pressured to agree to unproven therapies. Hepburn said that she did not feel bullied by any clinic, but she willingly tried anything and everything in her pursuit – in fact, she defended clinics saying they all did their absolute best to give her a baby.
Cheshire highlighted the issue of selective data presented by clinics in order to raise hope and added that the HFEA website will soon have a 'traffic light' feature for the most common add-on treatments, helping patients with evidence-based medicine decisions.
From the emerging discussions, however, there was a clear message that IVF is not the answer to everything and society should invest in alternative solutions including education of the younger generations.
Undoubtedly, for me, it was a very emotional and thought-provoking event from PET and it makes me feel certain that a lot more people will contact their local MP ahead of Wednesday's in support of a Ten Minute Rule Bill for Access to Fertility Services.
With the 40th anniversary of the first IVF success in the UK fast approaching, there could not be a better time for public consideration of the real costs of IVF.