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IVF: The continuing agony of treatment by postcode or bank balance

21 April 2006
By Clare Lewis-Jones MBE
Chief Executive, Infertility Network UK and Chair, National Infertility Awareness Campaign (NIAC)
Appeared in BioNews 355
It is now five years since the UK Government asked the National Institute for Health and Clinical Excellence (NICE) to produce guidelines for the treatment of infertility.

It is now four years since the Prime Minister, The Right Honourable Mr Tony Blair MP, said in his message of support to National Infertility Day 2002: 'The pain and distress infertility causes is very real and the variation in the level of NHS services is unacceptable. The Government is determined to change this'.

It is now two years since the NICE guideline was published. This guideline recommended that the NHS should provide three cycles of IVF/ICSI to couples where the woman is aged 23-39 and who have an identified cause of their fertility problems or unexplained infertility of at least three years duration. Andrew Dillon, Chief Executive of NICE said in the accompanying press release: 'Implementation of our guidance will take time. We have therefore suggested to the Department of Health and the Welsh Assembly Government that they consider giving advice to NHS organisations on how they should approach putting our recommendations into practice'.

The same day the NICE guideline was published, the then Secretary of State for Health, Mr John Reid, issued a statement accompanying it (the first time a clinical guideline has ever had such an accompanying statement) saying that every PCT should give eligible couples at least one free cycle from April 2005.

It is now one year on from that deadline and, sadly - no, not just sadly, unfairly, unjustly and undeniably inequitably - couples are still having to deal with access to treatment by postcode or bank balance when it comes to trying to access NHS funding for their infertility treatment.

So four years have passed since the government first said they wanted to end this situation. However, for many couples, and for our campaign, it has been going on for far longer. The National Infertility Awareness Campaign (NIAC) was set up in 1993 to fight this issue. And we will continue to fight for something that we feel is a justified and genuine cause. Infertility is an illness deserving of treatment on the NHS.

After all that, it must be conceded that there are many PCTs that are starting to fund one cycle of treatment that were not funding prior to the NICE guideline. And we are obviously pleased about that - it is a major step forwards. However, we now have a problem with huge variations in eligibility criteria between PCTs. For example, as mentioned previously, the NICE guideline recommended treatment to be made available where the woman is aged 23-39. Bizarrely, we are aware of large areas of England (such as Thames Valley or Hampshire and Isle of Wight) where couples cannot even be referred for IVF treatment until they are 34 (even if they know at an earlier age that treatment offers them the only chance to conceive), making them unable to have their treatment until they are 36 at least. This is neither cost effective nor clinically effective.

Infertility and its treatment is incredibly complicated, and a lot of people in PCTs don't have a good understanding of it. They don't see it as an illness. They don't understand the efficacy of a lot of the treatments. They simply don't see it as a priority. They should talk to the people we talk to every day. We also suffer because patients historically see infertility as a very private illness. You don't go around shouting you are infertile from the hilltops! It is therefore sometimes easy for others to put fertility treatment as a low priority for funding, simply because there is not a huge stampede of patients publicly demanding these treatments.

Couples will do whatever they can to raise the funds to pay for their treatment because, given the affect of age on the success of treatment (something patients know only too well), they know they cannot wait for the PCTs. They will take out loans, borrow from family, scrimp and save. But even by making such sacrifices, countless couples cannot raise enough money. And they shouldn't have to - they have been promised the treatment on the NHS and they deserve to have those promises fulfilled. Given the huge physical and emotional impact of infertility it is just too cruel to do otherwise.

This postcode lottery is absurd. It is wholly understandable that infertility patients wonder what the point was in referring infertility to NICE when what is published is not worth the paper it is written on. I urge this Government to put some clout behind the NICE Guideline, and do what has been done in Scotland and Wales (which possibly will also soon happen in Northern Ireland), and that is to issue central guidance to the PCTs on what they should provide. I am certain they want guidance too.

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