This article was originally written by me for IVF babble. For more information on this and other fertility topics please visit http://www.ivfbabble.com
Sitting at my fertility fight club in Southampton over a year ago, We were holding cups of tea, eating cookies supplied by our (frankly, rather amazing) Councillor, going around the room and talking about where we are on our journey. We try to go as much as we can, because as anyone who is going through infertility treatment will tell you, it’s lonely. It’s tough. You feel like you are going bananas, because no one outside of your circle wants to talk about it.
Infertility is often met with hushed tones and muttered apologies, smattered with the odd “It’ll happen when you least expect it”, or “just relax and try not to think about it”. We try to do these things all the time, trust me. This is why therapy sessions are great, you get a chance to really let it all hang loose, cry ugly tears, and laugh about things other people might find awkward.
But nothing could prepare me for the huge bomb that was going to get dropped that evening.
One of the couples was talking about how they were dealing with their first two rounds failing on the NHS. They were discussing their options for their third, but they were having troubles deciding when it was going to happen because they couldn’t afford it. IVF is expensive, couples can spend up to £8,000 per cycle, with only a 33% chance of success.
“But hang on, don’t you get three rounds of IVF on the NHS?” I asked.
“Not in our postcode area. We only get two cycles so now we have to decide how we are going to afford our next treatment”.
Note the phrase Not in Our Postcode Area. In writing my book “What to expect when you’re not expecting”, I researched the costs of IVF, the processes you have to go through, and just how complicated it is for people to get the treatment depending on where they live. Believe it or not, it’s actually really hard to get funding for IVF treatment in the UK, depending on your postcode.
Fertility Fairness is the UK’s leading campaign body for this problem. For over 20 years, the charity has campaigned for people to have comprehensive and equal access to a full range of NHS funded treatments for infertility, including the right to access up to three full cycles of IVF treatment. So how is the funding decided at the moment? Can you get three cycles anywhere without remortgaging your home? What is the government doing about it? And what hoops do couples have to jump through to get funding?
To access funding on the NHS, depending on where you live there are certain criteria you have to hit. Some are common sense, others are quite frankly ridiculous. As an example, I have listed below the criteria in my area (North East Hampshire) which is one of the ok-ish areas. We can get free funding for two cycles, which is defined under our CCG as “One fresh cycle and all viable frozen transfers”.
(The definition of a cycle is also up for debate depending on where you live, as if it isn’t complicated enough already)
For us to be eligible:
I must be under 35 years old when we start treatment
A BMI of 19-29.9 for a period of 6 months before receiving any sort of treatment
Been trying to conceive for 2 years
Have no previous children, dead or alive, from a previous relationship on either side.
We moved to this area with knowing that we are going to be offered more cycles here then in Portsmouth, where funding is limited to one cycle. This information isn’t even offered on the CCG websites in most cases, it’s thanks to fertility fairness that I was able to find this out.
So when you add to this the fact that in some areas of the UK couples receive ZERO funding, and some receive what is classed as the Golden Standard, it makes it even more mind boggling. Let me explain.
If you live in Scotland, you will be offered the Gold Standard treatment. (Scotland is the best place in the UK in terms of IVF provision) While Scotland will provide three funded IVF cycles for all eligible couples, and since 2010, Wales has offered women under 40 two rounds of IVF/ICSI treatment, in England both access criteria and provision of treatment are determined by postcode, and increasing numbers of Clinical Commissioning Groups are either reducing services or stopping them completely. it’s an absolute minefield and even more stress to add to what is already a complex condition that affects 1 in every 3 couples in the UK. Surely we as the pioneers of IVF should offer patients access to a level playing field of care across the county? If someone had a heart condition would you really ration the treatment for this based on where they live?
The Power of Three
The whole reason you should be offered three cycles is because not everyone will yield the same amount of eggs. Not all eggs are created equal. So this puts couples in some areas at a disadvantage if their eggs aren’t good enough quality to be transferred. Some couples eggs just wont survive the process. It’s emotional enough as it is without being told “This is your only chance at this, unless you have upwards of “£16-18,000 spare for other treatments”. A study conducted in 2009 found that the cumulative effect of providing three full cycles of IVF increased the chances of a successful pregnancy to 45-53%. Given the upward trend in success rates, this percentage is likely to only increase over time. So why do we ration it so unfairly?
I have written to a number of members of parliament about this, and have received a varying degree of responses. Our old MP in Fareham Suella Fernandez simply dismissed the fact that it is unethical to ask couples to jump through these hoops, and my current MP Damien Hinds referred me to NICE guidelines and advised the following:
“I would like to reassure you that the government is following the National Institute for Health and Care Excellence (NICE) guidelines on access to IVF treatment on the NHS in England and Wales. (It isn’t). According to the guidelines, women aged under 40 should be offered three cycles of IVF treatment on the NHS if they have been trying to get pregnant for two years or have not been able to get pregnant after 12 cycles of artificial insemination. (of the 20 couples I spoke to none were offered 12 cycles of ISCI, and some CCGs restrict the age to 35, won’t offer it until you have been trying for 3 years, etc.) Provision of fertility treatment will continue to be decided at a local level by Clinical Commissioning Groups. There will be no blanket restrictions on treatment (except for in the areas where IVF funding has been withdrawn completely) with each case decided on an individual basis although I do understand that IVF provision can change depending on the local needs and priorities of the population. (The priorities of the population is not a deciding factor in a couple being offered IVF).”
I was so angered by this response. If the people who are our voices do not understand the unethical and cruel goalposts put in front of couples who just want the right to try and have children, then what chance do we have? The right to try to have a family should not be defined by your bank balance or your address. It should be fair and equal and available to all those who need it.
People often talk about their friend or friend of a friend who went through IVF and it succeeded, but people don’t want to talk about how heartbreaking it is to be told “I’m sorry, we can’t help you, you can’t have funding”. These thoughts keep me awake at night. The idea of going through IVF to be told it’s not worked and there is nothing else they can do terrifies me. Because we can’t afford IVF. Not many people can. But people don’t recognise how debilitating it can be, because really there’s nothing to be fixed. You’re not broken. You aren’t dying. Your life isn’t going to end because you can’t have children. It’s just that the emotional distress of imagining your life without children is too much to bear, to the point that it can break even the strongest women and men. You can’t bear the pain, and you have to do something about it. That’s what infertility is at the heart. It’s not a death sentence. It feels like a life sentence. And you are given the options to help this work, and to get through this. Sometimes it works, sometimes it doesn’t. But you are still here. And if it doesn’t work, and you can’t have children, or you have a successful IVF cycle and then the next time you try it doesn’t happen, you can’t just stop living your own life. You have to try to move past the raw emotional pain and make peace with yourself, and love yourself, because otherwise you will put your life on hold and lose yourself.
But we need to talk about how much pressure is put on us to even get our treatment in the first place. We already have everything against us, so why are we having to fight for the treatment that NICE states we are eligible to have?
The postcode lottery of IVF is cruel, unethical and an added stress to many couples who so desperately wish to have a child. The only way we can get these people to understand this is to shout about it from the rooftops. You can email your MP – you might well have a much better answer than I have had from mine. You can sign the petition to get this debated in parliament again – last year 5 MP’s attended a debate on the provision of IVF. 5. It’s not good enough at all. You can contact your CCG (if you live in England) and copy Nicola Blackwood, Parliamentary Under Secretary of State for Public Health, in on your letters to your CCG. Contact your local Health watchdog, contact your local health and well being board. And it can work. We do have a voice. There are some CCGs that have held consultations to cut funding and because of the public, it has been saved. So we can do something about it.
The 3 things people can do to promote fairness for fertility treatment are:
- Tell your MP: inform them of your situation and what is happening in your area; a template letter is on our website at http://fertilitynetworkuk.org/action/ and MP’s contacts details are available at https://www.theyworkforyou.com/
- Tweet your support and a pic using the hashtags #IVFx3 #tellyourMP #therighttotry
- Share your own story. Talk about it. Attend consultations to cut funding. Make our voice heard.
What is your experience of the IVF Postcode lottery? Do you live in an area with no funding? What has your experience been? Lets talk about it!
Until next time,