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Commissioning decisions reveal the trivialisation of infertility

22 September 2014
By Vicky Whitehead
Policy advisor to Fertility Fairness
Appeared in BioNews 772

Earlier this year, Fertility Fairness conducted an audit of all Clinical Commissioning Groups (CCGs) and discovered increased rationing of IVF treatment across England.

If you have ever had a discussion about NHS-funded IVF you may well have heard - or even said - the following: 'why IVF and not cancer treatment?', 'a child is not a right', and most dismissively, 'infertility is not a disease'.

The tendency is to trivialise both the disease and the experience of those suffering from it. This opposition is, of course, highly upsetting for the thousands of couples struggling to conceive. But now, worryingly, the widespread antipathy is spreading to commissioners, and worsening the so-called 'postcode lottery'.

In England the national recommendations say that women under 40 should be offered three 'full cycles' of IVF after two years of unexplained infertility. A full cycle is defined as one round of ovarian stimulation and the transfer of all subsequent fresh and frozen embryos.

Unfortunately, commissioners seem to view these recommendations as a sort of à-la-carte menu from which they can pick and choose; altering the definition of a cycle, the age requirements, the number of cycles available, and the access criteria at will. To call the situation a 'postcode lottery' fails to convey the sheer scale and depth of the variation.

To give examples from the data: there are 211 CCGs in England, Fertility Fairness' survey covers 210 of these. Only 18 percent provide the three cycles nationally recommended, 29 percent provide two cycles and 52 percent – more than half - provide only one cycle. Worryingly these figures show a reduction of five percentage points from the previous year in the number of CCGs who commission the recommended three cycles.

But such disparities are just the start. At least 60 CCGs (29 percent) require couples to spend three years attempting to conceive, rather than the recommended two years. Conversely, at least seven CCGs (three percent) – require couples to wait one to two years even when there is a diagnosed cause of infertility. To clarify, these couples will not conceive naturally in this period; this is just an enforced waiting list.

What's more the audit could only find 68 CCGs using the appropriate definition of a cycle, meaning that there could be up to 68 percent of CCGs using their own definition. These definitions are often not widely publicised, and may not mean much anyway to the general public.

So to demonstrate how misleading these definitions can be there are seven London CCGs that claim they provide three cycles of IVF. However they count any embryo transfer as a 'cycle', including the transfer of frozen embryos. This means that a woman could receive less than even one 'full cycle' of treatment (properly defined) by these CCGs, yet they report themselves as compliant with national guidelines.

It doesn't end there. Women under 40 are supposed to receive three full cycles of treatment but in at least 18 CCGs (nine percent) the cut-off age for treatment is 35. Combined with the requirement to attempt conception for two to three years this can limit the treatment window to a very narrow period.

The most inappropriate, but frequently seen, restriction is that where one partner has a child from a previous relationship (often including adopted and occasionally fostered children) then the couple are denied IVF. There is no basis for this in the national guideline but a shocking 171 CCGs (81 percent) deny couples treatment on these grounds. This amounts to little more than a societal judgement on those deserving of treatment, and this is not the role of a commissioner.

The purpose of this article is not to argue for state-funded fertility treatment, because the simple fact is that that decision has already been taken. Instead the point is that commissioners must change their dismissive attitude towards infertility.

There is no other disease that is perceived to be of such low priority that commissioners feel free to change even the basic definition of the treatment. Providing less than a full cycle of IVF is providing only part of a treatment, providing less than three cycles of IVF is providing only part of a treatment.

Issues of funding and resources will continue to arise, and local commissioners will have to assess what they can afford to provide. But at the very least they must take infertility seriously. Were they to do so, they would surely have more scruples about changing at will the basic provision of a service.

5 October 2015 - by Kirsty Oswald 
North East Essex Clinical Commissioning Group has announced that it is ending its IVF funding, and fertility treatment will only be available to specific groups of patients...
1 September 2015 - by Kirsty Oswald 
Researchers in the USA have found that fertility concerns may be contributing to low tamoxifen use and discontinuation of the drug among reproductive-age breast cancer patients...
30 March 2015 - by Vicky Whitehead 
In England, the IVF postcode lottery impacts on every different level of a patient's NHS treatment in a myriad of ways. Not only is there widespread variation in who can access treatment and the number of IVF cycles available, but even in how a cycle is defined...
12 January 2015 - by Dr Ëlo Luik 
Are business and medicine hopelessly intertwined in fertility care, at (quite literally) the expense of the patient?...
19 May 2014 - by Rebecca Carr 
The National Institute for Health and Care Excellence has published a set of draft statements that aim to 'eliminate' current geographical disparities in access to fertility treatment...
3 February 2014 - by Mark Johnson 
In 2011, the All Party Parliamentary Group on Infertility found that over 70 percent of NHS Primary Care Trusts were not providing the recommended three full cycles of IVF to eligible couples. Three years later, there has been a very real and very disappointing lack of progress...
27 January 2014 - by Julianna Photopoulos 
A recent survey carried out by the National Infertility Awareness Campaign (NIAC) found that 73 percent of clinical commissioning groups (CCGs) are not funding the recommended cycles of IVF treatment....
25 February 2013 - by Mark Johnson 
On 20 February 2013, the National Institute for Health and Clinical Excellence published its new guideline on the assessment and treatment of couples with fertility problems...
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