IVF industry

Have Your Say - Official Consumer Law Guidance Consultation

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Earlier this year I posted about the development of new consumer law guidance for IVF clinics in the UK, to make sure clinics treat patients fairly.

The draft guidance has now been published and we now have the chance to have our say.

The important bit

You can scroll down for all the info about what the guidance is, what it’s for, the consultation as a whole - but I’m putting this at the top cos this is the bit that really matters - making sure the guidance works for us.

The detailed guidance is aimed at fertility clinics - so I asked the CMA what they most wanted to understand from patients.

Ths easiest way to take part in the consultation is to fill in this questionnaire and I’ll collate all the answers into one submission.

Please submit your answers by no later than Sunday 3 January 2021

Patient Questionnaire

 
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Everything else

What does the guidance cover?

The draft guidance [pdf] sets out what information clinics should provide to patients and when this should be provided.

In order to comply with consumer law, clinics must not provide misleading information to patients or fail to provide all the relevant 'material' information they need to make informed decisions.

It also explains what clinics should do to make sure their terms and practices are fair under consumer law.

It’s intended to address problems such as:

  • patients being unable to compare clinics' prices because some clinics present misleadingly low headline prices

  • some clinics providing misleading information about their success rates

  • some clinics not informing patients about the limited evidence base for certain add-on treatments or their associated risks

  • some patients being faced with unexpected additional costs during treatment

What does the CMA want to know?

The CMA want to hear from anyone with knowledge of the fertility sector - including patients - so they can take can our views and expertise into account as they finalise the guidance.

They’ve published a consultation document [pdf] with a series of questions to consider, such as:

  • asking for views on the information that patients need at various stages to make informed decisions about which clinic to choose and which treatments to buy

  • inviting further examples of practices, policies and terms used by fertility clinics in their dealings with patients that raise concerns from a consumer law perspective

  • seeking views on the scope of the guidance and whether there are aspects of the guidance that could be clarified.

Take part in the consultation

Questionnaire

Ths easiest way to take part in the consultation is to fill in this questionnaire and I’ll collate all the answers into one submission.

Please submit your answers by no later than Sunday 3 January 2021

Email

Alternatively, you can email your thoughts to ConsumerLawIVFTeam@cma.gov.uk by no later than 5pm on Tuesday 5 January 2021.

Find out more

For more about the consultation please check out the CMA’s website.

Consumer Law Guidance on Self-Funded IVF - Patient Consultation

The CMA (Competition & Markets Authority) is developing new guidance for IVF clinics in the UK to make sure they comply with the law and put patients first.

They’re concerned that some clinics may be mis-selling their services or misrepresenting their success rates - but currently there is no written guidance on consumer protection law for the IVF sector at all.

The guidance will cover issues such as:

  • Price transparency: Clinics should present clear and upfront prices for their treatments.

  • Potential mis-selling of treatments: Patients should not be mis-sold ‘add-on’ treatments, which are offered by some clinics and can cost up to £2,500 per cycle.

  • Success rates: Clinics should not mislead patients about how successful their treatments are and should ensure that rates are accurate and up to date on their websites and in advertising.

  • Unfair terms: Terms and conditions should be fair and transparent.

 


Having our Say

Although all IVF treatment is currently suspended due to the coronavirus outbreak, when fertility clinics do reopen it’s more important than ever that they treat patients fairly.

The CMA wants to hear from anyone who's had personal experience of any of these issues when considering or having self-funded IVF treatment.

You can do this in 2 different ways:

  1. BPAS (British Pregnancy Advice Service) - a charity who campaigns and advocates for reproductive rights - have created a short questionnaire to collate responses to share with the CMA - which you can complete here

  2. You can email the CMA directly at ConsumerLawIVFTeam@cma.gov.uk


The deadline for submissions is 8th May 2020.

Making our voices heard

This consultation is our chance to make sure this guidance works for patients - so it’s really important that we have our say.

The CMA have left it open to us to tell them what we think they need to know - you can share as much or as little as you like. 

Whether you choose to complete the BPAS questionnaire or email the CMA directly, here are some questions that might be helpful to think about:

Pricing

  • When you were considering your options, do you feel the clinics you looked at had clear and transparent pricing? 

  • Before you began treatment, do you feel you had a clear idea about what the cycle would cost? How did this compare to what you ended up paying?

  • Do you feel you understood what was included in the cycle cost and what wasn’t? 

  • Did you experience any unexpected costs? (e.g. things that weren’t optional extras, but which weren’t included in the cycle cost - such as drugs or blood tests)

Cycle packages

  • Were you offered a multi-cycle package? (e.g. embryo-banking cycles, financial discounts or ‘baby guarantee’ package).

  • Do you feel you had enough information to make an informed decision about choosing a package?

  • Were there any criteria you had to meet to be accepted as a patient on a multi-cycle package?

Success Rates

  • When you were considering your options, how easy was it to find and compare success rates for different clinics? 

  • Do you feel clinics provided clear information about their success rates? (e.g. on their website, social media or in leaflets/brochures)

    • Did they make it clear where these figures were from? (e.g. internal clinic data vs audited data from the HFEA)

    • Did they explain what the data was measuring & why? (e.g. pregnancy rates vs live births, per cycle started vs per embryo transfer)

    • Did they provide success rates by age group?

  • Do you feel you feel you understood what factors might have influenced these success rates? (i.e. why clinics might have different results)

  • Did clinics mention the HFEA website to you as a source of impartial information?

Add-On Treatments

  • Did the clinic offer you any add-on treatments - additional tests, procedures or medications on top of your core IVF treatment? (e.g. endometrial scratch, time-lapse imaging, pre-implantation genetic screening, reproductive immunology, endometrial receptivity tests, embryo glue)

  • Do you feel you had enough information to make an informed choice about whether to opt for an add-on? 

    • If you had treatment in the last 12-18 months: did your clinic mention the HFEA Traffic Light system for information about add-on treatments?

  • Was it made clear to you that it is not clear whether add-ons work? 

  • Were the risks of add-ons clearly explained to you? (e.g. any potential health risks to you or your baby, or that certain add-ons could plausibly reduce your chances of having a baby)

  • If you decided to opt for any add-on treatments:

    • Did you have to sign a consent form?

    • Were you clear about what the add-on would cost you?

    • How did this compare to what you ended up paying?

Find out more

For more information you can check out the official CMA page about the consultation:

Gov.uk - Self-funded IVF: consumer law guidance.

We have until 8th May 2020 to have our say - so let’s make sure our voices are heard.

 

The Sunday Times Style: Selling Hope: How Wellness Cashed In On Fertility

I was thrilled to speak to journalist Sophie Wilkinson for a brilliant article she wrote for The Sunday Times Style magazine about IVF add-ons: how the lack of NHS funding has pushed women into the private market, and how the baby business is only too happy to profit from selling us unregulated add-on treatments.

I added my own personal take, which was that it's essential that we have all the facts to make up our own minds and make a truly informed decision. My wonderful consultant didn't want to sell me tests or treatments he didn't believe were of any benefit - but I was a woman on a mission and was determined to throw everything and the kitchen sink at our treatment. And I'm glad I did, even though we weren't ultimately successful.

For me it was less about believing that these treatment would help us to have a baby, but rather than I was planning for what would happen if and when we ended up with no baby - so that I knew we couldn’t look back and think ‘what if?’

However plenty of Drs and clinics aren't so scrupulous - relying on patients to check out the HFEA website & traffic light system to find out if there's any evidence base for the treatments they're being recommended.

This is simply not good enough.

How can we give informed consent if we're not in possession of all the facts?

Check out the full article here: Selling Hope: How Wellness Cashed In On Fertility

Check out the full article here: Selling Hope: How Wellness Cashed In On Fertility

Defining Abuse in Assisted Reproductive Technology

What are the untold harms of Assisted Reproductive Technology (ART)?

Where does good clinical practice tip over into bad?

Where and how are patients exploited by clinicians and the commercial fertility industry?

These were some of the issues explored at a fascinating workshop about 'Defining abuse in ART', held on 3rd June 2019 , that I was honoured to have been invited to speak at.

The organisers of this event, Dr Nathan Hodson and Prof Susan Bewley, recently published a systematic review of abuse in ART that proposes a typology of the different ways patients may experience mistreatment during fertility treatment - including the exploitation of women (& how this intersects with other disadvantages), unnecessary or ineffective intervention, and avoidable harms to both patient and child.

Bringing together clinicians, bioethicists, social scientists, historians, human rights lawyers and patient advocates (alongside the fantastic Pamela Mahoney Tsigdinos: author of Silent Sorority and founder of ReproTechTruths), the goal of the workshop was to examine how professionals and the public can use this idea of ‘abuse in ART’ to question, critique and understand the worst excesses of the IVF industry.

“Patients are often depleted or consumed.

Treatment can use up patients because they buy into the stories sold by company websites.

These websites are glossy and bright and optimistic and often do not fully or faithfully represent patient experiences. I feel this is dishonest and disrespectful to patients.

But is it abuse? ... All I know is I felt deceived, used up, and outraged by supposedly great men. ”
— BMJ - Sexuality, Reproduction, and The Etymology of Abuse

My talk shared insights from the infertility community to explore the patient perspective: because whilst medicine is about evidence and data, the experience of going through fertility treatment is one of hope and heartache - and in order to develop effective safeguards against abuse, clinicians have to better understand the patient mindset, and better empathise with our experience.

It was a really engaging day with so many incredibly smart people, chewing over some really tricky questions - to which are no easy answers, but I'm really looking forward to seeing how this initiative progresses.

For more on this initiative check out