Pregnancy: Calls to regulate ‘cruel’ IVF add-ons

Greater control is needed over the “free-for-all” of expensive IVF add-ons, according to one Welsh MP.

Alex Davies-Jones wants increased regulations due to “vulnerable people being preyed upon”.

The expensive treatments are offered alongside IVF to increase the chance of pregnancy, but they have varying success rates.

The UK government said it was “unacceptable” for any fertility clinic to take advantage of patients.

The Pontypridd MP had to pay privately for her IVF treatment because her partner already had children from a previous marriage.

One round of IVF can cost in excess of £10,000.

Ms Davies-Jones said he was concerned some “vulnerable” people who have already stretched themselves financially to pay for IVF were being “preyed on” and offered extra treatments costing many hundreds or thousands of pounds – without proof that they work.

While she did not herself buy the add-ons, she said she was concerned about “mental and emotional anguish” people might feel over whether to spend money trying the treatments.

“These people are going into debt and it’s playing with their emotions and it’s really cruel,” she said.

She said current laws around fertility were not fit for purpose, and wanted the regulator to be able to fine clinics who are misleading patients around add-ons, ultimately banning the worst offenders from operating.

She has been trying to get the subject on the parliamentary agenda, but said there was still “stigma” around fertility issues.

“It also has the power to remove the licence from any UK fertility clinic if they do not comply with their licence requirements, as set out in their code of practice.”

Any non-essential procedure, technique or medicine added to standard IVF treatment is considered an add-on and some procedures can cost thousands.

Examples of add-ons include:

According to the Human Fertility and Embryology Authority (HFEA), 74% of IVF patients included add-ons in their treatment.

They are intended to increase the likelihood of a successful pregnancy, but their success rate varies.

Chris and Sarah Lesiter-Burgess from Glan Conwy, Conwy county, chose to have IVF treatment in Prague 12 years ago after being put off by a “money-making” approach at UK treatment clinics.

Ms Lesiter-Burgess said one consultation “was like being in a travel agency” with 20 couples in the same room, where “all they went through was an entire list” of prices and add-ons.

The couple found out, while in Prague, that a treatment they were encouraged to use multiple times should have been stopped after the second attempt.

Now parents of three, they were “concerned and disappointed” it was still happening.

Mr Lesiter-Burgess said he would “fully support” increased legislation to protect people going through IVF.

The industry regulator HFEA has been concerned about add-ons being mis-sold “for a number of years”.

It has created a “traffic light” system rating different treatments based on expert reviews of the scientific evidence.

So far, it has reviewed 12 add-ons, with five rated as amber, meaning there is conflicting evidence over whether they work.

The rest are red, meaning there is no evidence from randomised control trials that they increase chances of a successful pregnancy.

Chief executive Peter Thompson said extra powers would be useful as they work with a 30-year-old law and “a lot has happened since then”.

The HFEA has powers to close down clinics, but not to levy fines.

“Those sorts of powers may be more suitable to ensure good clinical practice” he said, rather than a “nuclear option”.

However, the HFEA acknowledges treatments might be suitable for some women in certain circumstances.

Mother-of-two Sara Powell-Davies, from Caerphilly, said add-ons made the difference in her getting pregnant.

She said if add-ons were ended: “You’re saying to people that you’re taking away their chance of having children, and who is anybody to take that chance away?”

She and her husband had 11 rounds of IVF and used many add-ons including embryo glue, endometrial scratches and various combinations of drugs before their first successful pregnancy with daughter Tirion.

She said they did not calculate how much they had spent over the years as having their children Tirion and Cadel was more important.

But she wished she had not trusted consultant recommendations without doing her own research.

She said it was only when she found an “open-minded consultant” willing to use a common steroid to suppress her over-active immune system that she conceived almost immediately.

“I think what they need to be doing is more research,” said Ms Powell-Davies.

“You can’t do a trial that you would normally within fertility because you can’t do the random blind test or whatever – that’s just not ethical.

“So you’ve got to look at another way to do it, and I don’t think the openness of mind is there.

“The evidence is there, if they care to look for it, and if they care to speak to the right people.”

Although health care is a devolved matter, the regulation of fertility provision is the responsibility of the UK government.

The UK government’s Department for Health and Social Care said: “It is totally unacceptable for any fertility clinic to take advantage of vulnerable patients.

“The HFEA provides information on their website for patients about treatment add-ons, including the available evidence base and a traffic light rating.

“It also has the power to remove the licence from any UK fertility clinic if they do not comply with their licence requirements, as set out in their code of practice.”