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An All-Consuming Problem? How to Protect Patients in the Fertility Market

18 January 2021
Appeared in BioNews 1079

The first online event held by the Progress Educational Trust (PET) in 2021 was 'An All-Consuming Problem? How to Protect Patients in the Fertility Market'.

The UK Government's Competition and Markets Authority (CMA) has drafted consumer law guidance for fertility clinics, due to come into effect in the spring of 2021. The purpose of the guidance is to help providers of fertility treatment in the UK to understand and comply with their obligations under consumer law. The CMA is seeking responses to the draft guidance from interested parties. This is an important development, given that the majority of fertility treatment in the UK remains self-funded.

PET invited a panel representing regulators, clinicians and patients to give their assessment of the draft guidance as well as to discuss its role and potential effects. After a brief introduction, PET's director Sarah Norcross got right to the heart of the matter by asking the panel: are those who seek self-funded IVF treatment patients or consumers?

The first speaker, Dr Louise Strong, director of consumer protection at the CMA, argued that while those undergoing medical treatment are undoubtedly patients, the fact that they pay for it also makes them consumers, thus placing them under the protection of consumer law. She pointed out that the planned guidance will not introduce any new regulation for fertility clinics and other businesses operating in the sector, but aim to improve patients' awareness of their rights as consumers.

Dr Strong expressed hope that the guidance might go a long way towards addressing some of the key issues associated with the fertility industry. These include patients being unable to make meaningful comparisons between the prices and success rates of different clinics due to the way information is presented, the issue of unexpected costs during treatment and the lack of information provided on the limited evidence base and potential risks of various treatment add-ons. The aim of the draft guidance is not to be exhaustive or prescriptive, she said, but rather to ensure that consumers are able to make informed decisions and that clinics treat their patients fairly.

Clare Ettinghausen, director of strategy and corporate affairs at the Human Fertilisation and Embryology Authority (HFEA), welcomed the CMA guidance. She explained that despite being the regulator of the fertility industry in the UK and the licensing body for clinics, the HFEA's powers are limited when it comes to regulating prices and protecting consumer interests. The HFEA Code of Practice outlines what kinds of information patients must be given before treatment, but there is currently very low compliance with these rules. For the HFEA, the new CMA guidance therefore presents an important reinforcement of patient interests in a fertility market that is very different from 30 years ago when the HFEA was first established.

The fertility clinicians' perspective was represented on the panel by Dr Raj Mathur, chair of the British Fertility Society and lead for reproductive medicine at St Mary's Hospital and at Manchester Fertility. Dr Mathur expressed his support for the draft guidance but argued that some of its prescriptions regarding the provision of information were not mindful of the difference between contractual and clinical contexts. In the latter, he argued, more information was not always better, and single-minded pursuit of upfront information could lead to long impenetrable pages of small print that do not take into account the person's specific circumstances or support their ability to make informed choices.

Overall, Dr Mathur felt that while the CMA was doing important work protecting patient interests, it needed to be careful not to encourage the transformation of a patient/doctor relationship into a consumer/service provider relationship, as this would not serve the interests of the patient.

Mark Wilcox, group medical director and GMC responsible officer at CARE Fertility, addressed similar concerns. He argued that the draft guidance is unclear on some important matters, such as risk and entitlements to refund, potentially affecting clinics' provision of multi-cycle packages. He said that because of this lack of clarity, there could be unintended consequences from what was otherwise a welcome opportunity to improve the relationship between the fertility sector and their patients.

Fertility advocate and former fertility patient, Katy Lindemann, wrapped up the panel from the viewpoint of the consumer-patient. She made a compelling argument for clarity and transparency in pricing, demonstrating the drastic differences in what clinics present as their prices, compared to what patients actually end up paying. The difference in her own treatment, between a presented price of £4000 and an accrual cost of £9000, is staggering. Lindemann also emphasised that a lack of clear and useful information from clinics was making patients seek information elsewhere, from blogs and books, where accuracy and reliability could not be guaranteed.

The Q&A made for a lively and informative discussion that covered a wide range of topics. A question about the applicability of the CMA guidance to NHS-funded treatment highlighted the complex challenges presented by the intertwining of private healthcare providers with a large NHS. Dr Strong replied that that due to the remit of NHS clinical commissioning groups, the issue had turned out to be even more complicated than anticipated.

Several attendees wanted to know more about the specific powers of the CMA and the HFEA, especially when it comes to pricing. Ettinghausen clarified that the HFEA did not have any powers to enforce the effectiveness or safety of treatments, but that it could report clinics to relevant authorities. The CMA could take clinics to court for violations of consumer law. Neither authority has the power to actually set prices for fertility treatments, but the panel agreed that this would be unlikely to be a practical or desirable power for such a regulator to have. What matters, the panel agreed, is that information is sufficiently clear and consisted for consumer-patients to make their own informed decisions.

The opening question that Norcross presented to the panel - whether those seeking fertility treatments are consumers or patients - illuminated key tensions in the CMA guidance, and in the provision of self-funded fertility treatments in general. PET's event demonstrated that it is helpful for various stakeholders to discuss such questions, even if there is no definitive answer.

Overall, everyone on the panel welcomed the CMA guidance, even if they thought certain elements of it needed further consideration. For those who fall into this latter category, Dr Strong reiterated that the deadline for submitting feedback on the draft guidance has been extended, and that the CMA is open to listening to and learning from a variety of perspectives.

PET is grateful to the British Fertility Society and Merck for supporting this event.

9 August 2021 - by Sarah Lensen 
IVF add-ons are procedures, techniques or medicines which can be used in addition to standard IVF protocols. They are usually offered by IVF clinics, and used by patients, with the hope that they will improve the chance of IVF success...
21 June 2021 - by Sarah Norcross 
The Progress Educational Trust draws the attention of the UK government to five areas of fertility treatment which have far-reaching consequences for the health of women...
14 June 2021 - by Michaela Chen 
Newly released guidance from the UK Competition and Markets Authority, would allow couples to initiate legal proceedings against IVF clinics that have falsely guaranteed their success rates...
10 May 2021 - by BioNews 
An in-depth conversation between Sarah Norcross (director of the Progress Educational Trust) and Sally Cheshire (outgoing chair of the Human Fertilisation and Embryology Authority)...
12 April 2021 - by BioNews 
This film documents a Progress Educational Trust event about how egg freezing relates to patient interests and business interests...
16 November 2020 - by Debbie Kitcher-Jones 
Consumer law gives important protections to fertility patients, as it does consumers in other markets. The CMA has provided guidance to help clinics providing fertility treatment to patients in the UK understand and comply with their existing obligations under consumer law...
9 November 2020 - by Martha Roberts 
The UK Competition and Markets Authority has released draft guidance for the UK fertility sector, to ensure IVF clinics understand and comply with consumer law...
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