What a fascinating afternoon at the Progress Educational Trust annual conference, where a range of speakers addressed the commercialisation of the fertility industry and asked whether what happens is always in the best interest of patients.
The afternoon started with the Chief Executive of the HFEA, Peter Thompson, who tackled the cost of fertility treatment in his talk. He explained that the HFEA doesn’t have any power to regulate what clinics charge for IVF, but that their research had found that most people (and that included those working in clinics as well as patients) felt that the authority should publish the average cost of treatment at different clinics.
The next speaker was Professor Willem Ombelet who gave a fascinating talk about the Walking Egg Project which offers affordable IVF for developing countries – and possibly others too. He explained how the focus on overpopulation in many developing countries means that infertility gets overlooked, but the consequences of not being able to have children are often grave for individuals who are isolated from their societies.
He was followed by John Parsons, now retired but formerly Director of the Assisted Conception Unit at King’s College Hospital. He said that he could be frank now that he had retired, and went on to discuss the fact that the fertility industry did not have a good reputation and was often regarded as an area focused on money-making. He spoke about the many different procedures used in IVF over the years, and looked at those which were still being used today without any clear evidence that they actually work.
Dr Yacoub Khalaf, Medical Director at Guy’s Assisted Conception Unit, gave an impassioned talk about hype and hope and about the array of unproven techniques used in some fertility clinics. He explained that misinformation was one of the most difficult things for patients today, and looked at some of the questionable marketing techniques used to sell fertility treatments and other therapies. He also discussed the fact that even within the NHS there was no clarity on how much IVF should be costing, with some CCGs paying twice as much as others.
There was an interesting discussion following the session, with lots of questions from the floor. Inevitably one of the issues raised was that familiar old chestnut about patient demand, and the suggestion that clinics had to offer unproven treatments to patients because if they didn’t, the patients would vote with their feet and go to the clinics which did. Dr Khalaf answered this very well, saying that if specialists were honest and explained why they didn’t offer certain things, patients would respect that – which is absolutely true.
The final session was titled The Real Cost of Infertility, and the speaker was Professor Robert Winston, who began by talking about the impact of infertility, explaining that it haunted people’s lives on a daily basis in a way that few other illnesses do. He said he felt that all too often people were not given a proper diagnosis, but were pushed towards IVF. He talked about the huge inequalities in the cost of IVF, and about the large sums some patients are paying for each cycle. He said the HFEA should be providing better information for patients, and questioned whether we need regulation for the fertility sector.
It was a thought-provoking afternoon, and I hope that having so many of these issues out in the open will help to encourage more discussion. It’s a tough time to be a fertility patient; there’s so much information from so many sources and so much of it is contradictory. Knowing what to believe and who to trust can be difficult, but it’s important that patient demand based on misinformation isn’t used as an excuse for offering more unproven treatments.