# Lord Winston condemns IVF industry



## Anthony Reid (Jan 1, 2002)

Lord Winston condemns IVF industry
http://www.northantset.co.uk/latest-national-news?articleid=2917555


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## LiziBee (Aug 24, 2004)

and here http://society.guardian.co.uk/health/news/0,,2091791,00.html
Lizi.x


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## Anthony Reid (Jan 1, 2002)

The HFEA response is on our homepage.


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## roze (Mar 20, 2004)

This isn't the first time he has expressed these opinions and from personal experience he is right in condemning the industry in the UK, as I too have little faith in the extent of scientific rigour applied and also the exorbitant cost of treatment which often remains unexplained.  We too feel taken advantage of by private clinics in the UK having had further extensive treatment abroad which was significantly more satisfactory in both process and outcome, and whats more, a lot cheaper.

However I do wish he would use his extensive influence more effectively by networking and regular articles to change things for the better rather than just via his outing to Hay and the like to promote his latest publication which serves no other purpose other than to fill his own coffers.
Also his last series on IVF was less than analytical and concise in respect of donor conception where as I see it he may as well have just been writing for the Daily Express. Not sure whether this was he or the BBC producers who badly edited some of the stories clearly for maximum effect.

As I see it, the main problem with IVF in London is largely Harley Street rents which jack up the prices, and capitalisation of private hospitals, often run by corporate America, on people's desperation in what may be a brief window of opportunity to do so.  There does seem little in the way of quality assurance in this particular sector.

The main bugbear I have had in the UK is that even from the best clinics I have felt that there is little in the way of scientific analysis going on in the case of individuals and I have been dismayed to find simple cheap procedures suggested only after a lengthy trial and error of IVF treatments.  My example is the FISH test to test the quality of my partners sperm.  I had thought there was no problem. If there was why hadn't someone suggested we do this at the start.  We spent £20 k before someone thought it might be an idea to spend £400 on this test. Why wait so long?  Greed and lack of forethought, of course.  As it turns out the test produced borderline results which put a question mark over sperm quality. So we may have spent three years effectively with no hope from the outset with the only attention given to my egg quality and no other factor.

Having had successful treatment in Kiev, it steadfastly remains my view that 
a) having a greater no. of embryos transferred ( 4) and 
b) using simple meds to increase blood flow 

both increased my chances of a successful conception- b) is actually the main reason as I see it as otherwise why would three embryos have implanted - compared to zilch previously  (only one progressed).

I have however both in the UK and Spain spent in excess of £20k before going to Kiev where they suggested that poor blood supply was indicated in my case where I had good uterine conditions and good embryos, ie no clinical reason for non conception. This was so simple I did not believe they could be right, but it seems that they were. 

Another case in point is the price differential between women/couples seeking  donor tx abroad directly as compared with going through UK clinics who purport to work in partnership with the same clinics.  I am aware that this can increase the price from £2000 to £10000. Why- so that UK consultants can just pocket the difference and retire early?  There may be some extra services provided but this should not cost more than £1000.  The donors are the same, the oocytes are the same, so where on earth is the justification for paying an additional £7-8000?

Whether the HFEA should be playing a larger role as Winston suggests is another issue to be considered but my view is that they would be better monitoring the quality of  people's experience, value for money, and quality assurance in the UK rather than some of the other issues they surround themselves with, ie SET.  Improve the processes, procedures, and chances  of conception in the first place and it is likely that the need to transfer multiple embryos will become a thing of the past.  

roze


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## Jennifer (Jul 22, 2004)

I am glad Prof Winston has spoken up about this.

I think it is appalling that clinics are allowed to freely exploit couples financially and nobody is doing anything about it.

_"...the HFEA is not a financial regulator and we have no legal remit to regulate the cost or provision of treatment."_

Then who is ? ? ?

Someone has a moral responsibility to ensure patients are not ripped off surely ?

I am glad I went abroad and therefore paid no fee to the HFEA.


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## Fluffywithteeth (Sep 25, 2006)

Could not agree more. The IVF industry seems to operate on a sausage machine model... fi at the end of the process you don't get a baby the assumption is you just need to keep going through the same process rather than the indivdual analytical look at what would make the differecne for you...

Roze - what did you do to increase blood flow?
Fluffy
x


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## roze (Mar 20, 2004)

Hi- re blood flow- the clinic in Kiev put me on Trental for two weeks(pentoxyfiline).  I noticed the difference straightaway, mainly because I did not wake up with numb fingers and pins and needles for this time.

In respect of the HFEA fee, we paid £100 registration fee to them when we registered with a UK clinic for donor eggs 3 years ago. We never heard from this clinic again about the donor and phone calls have gone unreturned.  I am intent in following this up sometime in the future when the baby is born as I feel so strongly that we have paid them £100 for nothing.

regards


roze


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## Betty M (Dec 6, 2005)

Roze

The fact that the clinic charges a fee for registering and doing nothing is really shocking.  The HFEA charges a fee to the clinics for regulating them which is based on the no of cycles carried out and is around £100 for an IVF cycle and £50 for a donor iui.  As you had neither with that clinic I cant see why they are passing this fee on to you. The clinics dont have to pass the HFEA fee on as a separate charge- mine included it in the overall treatment fee - and as I was at a not for profit NHS clinic that overall fee was a lot cheaper than most London private clinics with non of that rubbish about charging extra for scans and blood tests. Just shows the general greed in the private sector in my view. 

It is a great pity that the HFEA has no legal power to regulate costs in the fertility sector. But I dont think there is any financial regulation of any private healthcare and I am not sure there is any political will to do anything about it. Fertility treatment just isnt  a vote winning issue. The public at large just dont seem to care until it hits them personally. 

betty


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## Fluffywithteeth (Sep 25, 2006)

thanks Roze
... and good luck with following that up
Fluffy x


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## Anthony Reid (Jan 1, 2002)

Whilst I appreciate that Lord Winston is a very important figure in the IVF world, and I really do admire his understanding of patients needs. I cannot but help wonder what he could achieve if he was to use the skills that he has mastered from marketing himself onto a more proactive role rather than having a little fit every now and then.(apologies Lord Winston)

He is right about the IVF business and the commercial drive.

But what can we do? there is no financial regulation. Aside from that, Lord Winston has even stated before that there is too much regulation.

Last year at the HFEA conference I spoke to Deborah Spar - who had just launched a book called 'The Baby Business'. I told Debora that I actually found her book frightening and hard to read. She encouraged me to finish it.

More on Debora here : http://www.hbs.edu/faculty/dspar

Perhaps more people should pay attention to Deboras views.

Tony
x


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## Betty M (Dec 6, 2005)

I remember reading about Debora Spar's book at the time - she does focus a lot on the US where regulation seems to be totally non-existent and some scary stuff seems to happen. There was quite a good comment piece in the Guardian around the time of that Panorama which touched on what Spar says http://www.guardian.co.uk/comment/story/0,,1990346,00.html - ignore the commenters on the article though they are the usual band of loons/members of the public with no IF issues.

In my role as occasional defender of Prof W on these boards I would say that his Hay talk seemed to be as much about Richard Dawkins' The god Conspiracy and some bloke in the audience who collapsed as it was about the HFEA and the profit motive in IVF so it probably not surprising that it came across as a bit of a huff and puff. i wonder if it would be worth contacting him to ask why he doesnt take a more proactive role...

betty


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## Lol (May 19, 2004)

I guess this is the problem with having a medical procedure that is neither backed by insurance or funded by the NHS.  There is therefore no-one to sign off on the cost of a treatment.  

The other confusion is that headline costs of private vs. paying private at an NHS clinic are not that different - so how comes a private clinic can make so much money and a state funded one that charges a similar amount is not making a profit?  For example, Barts charges £3,000 for ICSI, ARGC charges £3,500.  There are private clinics that are cheaper than Barts that will be making considerable amounts of money.  

The difference in cost is the extras that are included on the NHS such as blood tests and investigation such as hysteroscopies.  The question is which clinics are recommending extra to up their profits and which ones are recommending them because they believe they are essential in improving the outcome for the patient.  ARGC is the most widely criticised as Taranissi is the richest doctor yet their success rates are the highest so this indicates that the extras they require are to improve success rates.  Would regulation impact their success rates without bringing the costs down very much?  Plus most patients will ask why a procedure is essential to improving success rates before making the decision to go ahead with it so pretty much self-regulate.  

I can understand Prof Winston's frustration but it is probably not helpful to voice it unless he has a solution.  I don't really know what the answer is as if the costs were regulated by the state and doctors were allowed to make no profit in theory it wouldn't be any cheaper!  This is proven by the cost of paying privately on the NHS.


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## Lorna (Apr 8, 2004)

If you look at the HFEA Act 1990, http://www.opsi.gov.uk/acts/acts1990/Ukpga_19900037_en_2.htm#mdiv1 you will find that 
paragraph 12 subsection e
paragraph 30 
Paragraph 41 subsection 8, 
forbid anyone from taking money, for sperm, eggs, and embryos, and it also forbids, a couple from "buying" a child through surrogacy. Everything else is a free for all. You can make as much money as you want. And provided the HFEA issues a "direction", you can even take money for things forbidden!
A direction allows the HFEA, or any clinic that is awarded one, to do anything it likes. It is a kind of get of jail free card.
So clinics are allowed to make as much money as they want. I actually think highly trained, highly qualified good propel should be allowed to make money. I get annoyed by the fact that donors, and surrogates are not compensated for their time, and often end up out of pocket as a result. I recognise, you can never, ever compensate donors, and surrogates fully for what they do, but don't they deserve "something", for their efforts?

Lets look at who else is allowed to make money. Go read paragraph 16 of the HFEA Act 1990. It allows the HFEA to set any fee it wants. OK the Secretary of State and the Treasury, must agree, but so far, they seem to have gone along with anything they want. What is the 103 pounds embryo transfer fee about? What benefit does the patient pay for paying it? I'm confused. Maybe it is just me!

And let's look at the HFEA members. And the accounts, http://www.hfea.gov.uk/docs/2006-07-11_Annual_Report__Accounts_-_Final.pdf
which lists payments to members of the HFEA, on page 53
What for? Work done for the HFEA. If a member attends a meeting, then they receive compensation for their time. Back in 2004, this was 169 pounds per day, http://www.publications.parliament.uk/pa/cm200405/cmselect/cmsctech/7/7i.pdf
paragraph 215, and the government's own Science and Technology committee, felt that at this (low) level, "the job to appeal only to those with a passionate interest in the subject"!!!
And the day rate has probably gone up since then, but I can't find out what it is now.
So members like Mr Hossam Abdalla, Professor David Archard, Professor Christopher Barratt, Mrs Ruth Fasht OBE, Professor Neva Haites, Ms Jennifer Hunt, Dr Sue Price, receive between 0 and 5,000 pounds per year, or they attend up to 29 days of meetings per year.
While members like: Ms Clare Brown, Professor Emily Jackson, Dr Maybeth Jamieson and Mr Walter Merricks receive between 5,000 and 10,000 pounds per year, or they attend between 29 and 58 days
And they also receive expenses, as shown on page 53, where Dame Suzi Leather received 12,527 pounds in expenses.

When I look at the compensation, say an egg donor receives for their time, 15 pounds, and receipted expenses, if you are very lucky, I feel there is something of an inequality. Why doesn't an egg donor's compensation for their time, at the same rate as an HFEA member? In which case, an egg donor would receive between 8,000 and 10,000 pounds per donation.

Whenever I see the HFEA commenting on egg donation, the spokesperson, always seems to be saying they support "altruistic donation". If they want people to be altruistic, ie unselfishly concerned for or devoted to the welfare of others, why doesn't the HFEA lead by example, and set the rate for attending meetings for at15 pounds per day, and no expenses. Mind you 15 pounds per day would be a big step up for most egg donors!
So maybe someone can tell me, why an HFEA member's time is worth tens of pounds per hour, but an egg donor's time is worth less than 0.05p per hour? I guess because the HFEA Act 1990, forbids, financial rewards for egg donation, but allows unlimited recompense for everyone else, including HFEA members.

And then let's look at Appendix6 of the accounts for year ending 31 March 2006. It seems to me that once someone gets onto one government quango, and "proves" themselves, they get invited onto other government committees, and invited to join organisations that want to lobby governments. So you get a few thousand here, and a few thousand there. And then ex-chairs of the HFEA move onto bigger and better things like becoming Chief Charity Commissioner. The Chief Charity Commissioner issues statements demanding openness and transparency by charities, but have you tried to find out what the total compensation package is for the Chief Charity Commissioner?

Why do images from George Orwell's Animal farm keep jumping into my mind?

So getting back to egg donation as defined by paragraph 12 subsection e of the HFEA Act 1990, which says:
(e) that no money or other benefit shall be given or received in respect of any supply of gametes or embryos unless authorised by directions

How come some clinics ask for a 400 pound non refundable fee, to find a woman an egg donor? After all it is illegal for anyone ask for money for the supply of gametes, ie eggs or sperm? Or do the clinics that ask for such a fee have a "Direction"? If they don't why isn't the HFEA prosecuting them? 
There was the Panorama program on Mr Taranissi and the ARGC. This program has sparked a number of court cases, so I'll not comment any further now. IMO, charging an up front fee, to find a woman an egg donor, is such a blatant violation of the HFEA Act 1990, that the HFEA should be running to stop it immediately. Why aren't they?

So could anyone who has paid the 400 pound fee do anything? I am not sure. Could they go to the police and swear a complaint. Probably not. Contracts are banned, and without a piece of paper it is very hard for anyone to say exactly what was agreed. It is your word against the clinics.
And lets add in the fact, that the law is so badly drafted it takes a team of barristers, and an expensive court cases to make the law clear. So, we, have yet one more group of people, making money out of the infertile.

If I look at page 16 of the HFEA's 14th annual report http://www.hfea.gov.uk/docs/HFEA_Annual_Report_-_14th_2004-05.pdf
they say "The protection of patients interest lies at the heart of everything we do". And in the 13th annual report http://www.hfea.gov.uk/docs/HFEA_ARA_03_04.pdf
on page 2, Suzi Leather says "We inform and protect patients".
So, my conclusion is that the HFEA thinks their work "protects" patients. Weren't the Taliban, just as adamant that they were "protecting" the women of Afghanistan.

(a somewhat cynical) Lorna


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