The end of the Drug Payment Scheme?

Last week the HSE issued the following statement to clarify the rumours that IVF meds were to be taken off the Drug Payment Scheme (under this scheme no individual or family pays more than €100 per month for prescription medication):

The HSE transferred a defined list of fertility medicines to the High Tech Scheme in March 2009. Unlike the Drugs Payment Scheme, the High Tech Scheme does not incur any markup but pays the pharmacist a patient care fee. Not alone did this transfer provide savings for the HSE, but it also enabled improved governance arrangements to be put in place.

The HSE indicated in its letter at the time to prescribers in registered fertility clinics that it considered three full cycles of IVF an appropriate benchmark for funding. Some established clinics in Ireland already operated such a benchmark to avoid hyper stimulation of the ovaries, which can have serious consequences for the lady.

Obviously, there has been outrage about this proposal.  IVF meds will now go up from €100 per cycle to about €4000.  It means the end of fertility treatment for many.  It seems the HSE has decided to hit a vulnerable group of patients in the hope that public opinion will not be on their side and the cuts will go largely unchallenged.  Their “reasoning” is so flawed, it makes me wonder if there are any medical people working within the HSE – I know of no clinic that operates a 3-cycle limit and the risk of hyper-stimulation of the ovaries has got nothing to do with the number of cycles a “lady” undergoes.  

Also, what does “three full cycles” of IVF even mean?  What if I don’t make it to egg retrieval?  Or embryo transfer?  What if I am doing an FET?  If I have had three cycles of IUI on a high dose of FSH (that would be me, the poor responder), does that mean I have used up all my goes?  In fact, as a very poor responder with zero risk of OHSS, shouldn’t I get unlimited goes?

I have written to the Irish Times to highlight the situation – letter is in today:

Madam, – The news that the HSE is to start making certain medications unavailable on the Drug Payment Scheme has come as a huge shock to those who could not otherwise afford necessary medications.

The first victims are infertility patients, who have been hit with the news that they will have to pay the full amount for IVF drugs if they need to have more than three rounds of treatment. This amounts to approximately €4,000 per cycle of IVF, up from the current monthly cost of €100, making fertility treatment unaffordable for most.

To add insult to injury, the reason the HSE has given for this – to avoid the risk of hyper-stimulation of the ovaries – is completely inaccurate and unrelated to the number of fertility treatments a woman undergoes.

What right does the HSE have to single out one particular group of patients and refuse to pay for their medication? Who will be next? – Yours, etc,

This is not just about infertility patients and whether or not the State should fund IVF (the State doesn’t pay a penny for any fertility treatment, apart from the funding of medication on the DPS). If the HSE is successful in targeting IVF patients, who will be next? Those who suffer from drug and alcohol-related illnesses? The mentally ill? If this becomes a political football, it can only end in one group of patients being pitted against another in a bid to fight their cause. It just cannot be allowed to happen.

Please sign the petition against these cuts.

Irish Independent article on infertility

Irish Independent, Saturday 27th June 2009

Many couples take having children for granted, but Fiona McPhillips found a different reality that included miscarriage, infertility and, finally, children

By Fiona Mc Phillips
Saturday June 27 2009

No couple expects to be in for the long haul when they start trying for a baby. It is supposed to be a time of great hope and anticipation, when you plan excitedly for your new lives together. It is true that having a baby changes your life, but not having one changes it so much more. Sadly, this is something that one in six couples will find out.

This wasn’t supposed to happen to me. I had a child, conceived without any problems. We were good at this. When we started trying again, I did conceive after a few months but miscarried. I had known how common miscarriage was (approximately one in four pregnancies), but I wasn’t prepared for the onslaught of emotions it would bring. I felt angry, cheated, desolate and so, so sad. Everyone said I could try again, but I wanted that baby, the one that would be born on that due date.

When you lose a child, you lose your future. It doesn’t matter how long your baby has been with you, you feel the gap that their death has left behind. From the moment you know about your baby, you plan their future — your future, together. You work out the due date, pick names, imagine who they will look like. When these hopes and dreams are taken away, it often seems like you are expected to forget you ever had them. I couldn’t forget for one second and I knew that, for me, the only cure for miscarriage was another pregnancy.

If I had been eager for a baby before, I was desperate now and trying to conceive (TTC) became all-consuming. I started a blog and originally called it The Two-Week Wait. The two-week wait is the time between ovulation and when you can test for pregnancy — that’s how long I expected to be writing the blog for. Well, two weeks came and went, and another, and another and, before I knew it, I had unwittingly documented the slow descent into infertility.

A year after our first miscarriage, an IUI (intrauterine insemination) yielded success but the baby died at three months gestation. Further IUIs were fruitless, so we moved on to IVF (in-vitro fertilisation). Two IVFs and two further miscarriages later, we were running out of options physically, emotionally and financially. We were lucky enough to conceive naturally twice more, but lost both babies. Finally, with the help of all of the fertility and miscarriage support drugs available to (wo)man, we conceived our daughter and carried her to term. There are no words to describe how lucky we feel.

I always wanted children, lots of them. Although infertility was one of my greatest fears, it was not something that bore heavily on me — at least, only to the extent that I didn’t want to put off having children for too long, just in case. I didn’t know anyone who was infertile, so I could only guess at how hard it might be.

I didn’t have a clue. My guess only extended to the long-term pain a couple might feel about not having a child in their lives. Thanks to television, many people assume that there is a once-off diagnosis that a couple has to deal with, and that they are then free to return to their lives and reshape their future without their much-wanted child. If only it was that easy.

It is very difficult to explain the cumulative effect of month after month, and year after year, of hope and disappointment, without making it look as though you are just not coping very well with TTC, something most people breeze through. After a while, everything hurts — other people’s bumps and babies, anniversaries of failed cycles and lost babies, and every new birthday, Christmas and Mother’s Day you face with empty arms.

There is a huge lack of understanding of infertility in the outside world. It is just not viewed as one of the very bad things in life. A common reaction is, “Why can’t you just be happy with what you’ve got? Focus on all the good things in your life”. When you can’t have a baby, nothing else matters. It is not possible to forget about it, channel your energy elsewhere, take up a hobby. The desire for a child goes beyond the desire for the joy that a child brings — it is a primal, uncontainable urge that overpowers all reason. Yes, I had a child and yes, I knew how lucky I was — nobody knows that more than an infertile person. And yet the thought that I might never carry another baby, that my son might never have a sibling, was unbearable.

Infertility is a very difficult and painful struggle. The research of Dr Alice Domar, professor at Harvard Medical School, suggests that the stress endured by infertility patients is comparable to that experienced by people undergoing treatment for cancer and Aids. A 2004 study found that 40pc of infertile women suffered from depression, while 87pc had anxiety.

I was one of the 40pc. I stopped socialising beyond what I considered absolutely necessary. I could go through the motions of a wedding, a christening, a birthday dinner; I just didn’t want to. The day itself wasn’t usually that bad, it was the anticipation that was the killer — the fear of announcements, of the blithe conversations about pregnancy and kids, and the terror of the platitude.

“I just know it’s going to happen for you soon.” “Don’t worry, it could be worse.” “It’s God’s will.” “Why don’t you just adopt?” And the old chestnut: “Just relax and it will happen.” If there is one piece of advice I can give to those who have friends and family members suffering from infertility, it is that it is better to say nothing at all than to say the wrong thing and risk upsetting your loved ones. If you feel awkward and don’t know what to say, then just say sorry, and give the person a hug if you feel it is appropriate. And one more thing, if I may: stress does not, I repeat, does not cause infertility, but infertility sure does cause stress.

I dealt with my stress by writing. I wrote on internet message boards, I wrote my blog, I wrote my book. I wrote comebacks to insensitive comments in my head while in the shower or on a bus. Sure, I was obsessed, but I decided to channel that obsession into spreading the word. If I couldn’t have a baby, I was going to try to make sure that some good came of the whole sorry mess. And along the way, I met some wonderful women who listened to my rants and kept me sane, and I hope I did the same for them.

The greatest piece of advice I can give to those battling infertility or recurrent miscarriage is to talk to others in the same boat. The easiest and least intrusive way of doing so is to join an internet forum for those who are at the same stage as you, or facing the same obstacles as you. The Irish Infertility Support Forums — set up by Helen Quinn, who has been there, done that (www.irishinfertilitysupportforums.ie) — is a caring and supportive community of women (and a few men) who are dealing with all aspects of infertility. It is also an invaluable resource for information on local fertility clinics and services.

For those who would prefer to meet other women or couples face to face, the National Infertility Support and Information Group (NISIG) can put you in touch with your local support group. You can reach them online at www.nisig.ie or call them on 1890 647444.

Finally, it is important to remember that most couples do go on to have a child, one way or another. My doctor once said to me, “Brave women are generally rewarded”. There are no guarantees, but it can and does happen — even against the greatest of odds.

Fiona McPhillips is the author of Trying To Conceive: The Irish Couple’s Guide, (Liberties Press). See also www.makingbabies.ie.

The Morning Show / Indo

I spent this afternoon recording a show on infertility for The Morning Show on TV3, to be broadcast at 11am next Monday 15th June. Also on the show are fertility expert, Zita West, and Sarah and Bob Keating, who have been TTC for two years.

Update: The show is here. I am on from 20 minutes, although Sarah and Bob and Zita West, who are on before me, are well worth a look.

I have also written an article on infertility for the Irish Independent magazine, which I think is due to run tomorrow (Saturday 13th June). I will update with a link if it is in tomorrow.

Update: This will be in next Saturday’s (27th June) Irish Independent magazine.

This time last year…

My beautiful, clever, adventurous, happy girl is one today. Best year of my life.

http://farm4.static.flickr.com/3311/3530133733_d400e31eb5.jpg

She is almost walking unaided, says a few words – mama, dada, baba, hiya, peekaboo, ball (ba), bottle (bobo), bear (beh), feed me (nom nom), has eventually started to grow some gorgeous blonde curls, loves music and dancing, loves books, gives big hugs and wet kisses, giggles constantly with her big brother and smiles nearly all the time. Best little girl ever.

Ireland AM

I was on Ireland AM on TV3 yesterday. It was a last-minute thing so I didn’t get a chance to tell anyone. The topic of discussion was older women and pregnancy, given that a 66-year-old woman is set to become Britain’s oldest mother. But mostly we talked about infertility and I was pleased to find a sympathetic, understanding approach in presenter, Sinead Desmond.

Baby is fine. Good scan today. I won’t use the word “relax” just yet, as it is impossible to do so with two kids, work, morning sickness and total exhaustion but those same things mean that life is good and the outlook is optimistic.

I’m an infertile, get me out of here…..

God, this is not easy. Or maybe I’m just no good at it. Never was.

A heartbeat at 6 weeks does not mean that panic won’t set in sometime later. Morning sickness has been adequately awful, but what happens when it is not quite so bad one day? The fear. Still feeling ok the next day? Meltdown.

It was only a 2 day respite but enough for me to question everything I’ve learned in my 9 pregnancies. So I was almost shaking at today’s 9 week scan. All fine. Baby is measuring a couple of days behind but all completely normal according to obs. Heart is beating, growth is good since last scan. And yet I’m still thinking about the 2 days and what if it loses another 2 days by the next scan.

Maybe it’s just the tiredness and the sickness and the feeling that I couldn’t possibly be this lucky again. And the thought that I could be this lucky, it is so exciting and wonderful and I suppose it might really happen!

High FSH

I get a lot of traffic to this site from people searching for information on high FSH. Here is my take on it.

Follicle Stimulating Hormone is secreted by the pituitary gland and stimulates the ovaries to mature follicles in preparation for ovulation. An elevated level (>10mIU/ml) on day 3 of the menstrual cycle indicates that the brain is having to work harder to stimulate the ovaries; this is thought to be related to a diminished ovarian reserve. It also means that the patient is unlikely to respond well to ovarian stimulation medication used in IUI and IVF. Doctors tend to agree that you are only as good as your worst FSH result and that a lower result one month does not cancel out a poor result another month. However, there is no consensus on whether or not a low quantity of eggs also indicates a low quality of eggs. Many reports suggest that a younger woman with high FSH has a much better chance of success than an older one with the same FSH level because her eggs are younger and therefore likely to be of better quality.

Conventional thinking suggests that patients with high FSH have a very reduced chance of pregnancy, either with or without assistance. However, we do not know the FSH levels of those with no fertility problems so it is not possible to say that those who conceive easily always have low FSH levels. It is possible that an elevated FSH level in itself does not predict pregnancy outcome but that coupled with poor egg quality and/or other fertility problems, it may seriously reduce the chance of pregnancy.

Traditional Chinese Medicine believes that FSH and related egg quality can vary extensively from month to month and that this can be improved with the help of acupuncture and Chinese herbs. Practitioners believe that stress can play a big part in raising FSH levels and that this does not necessarily indicate lower egg quantity or quality.

A real life friend recently started trying for a baby. She conceived after a few months but sadly miscarried. She had had day 3 and 7dpo bloodwork done early on, mainly to make sure she was ovulating. Her GP had told her that all the results were normal and she hadn’t questioned it any further. After her miscarriage she asked me advice on a few things and I asked about her FSH level, just to rule that out as a problem. She looked up the number and called me back straight away. It was 13.4, she was 33 years old. I recommended, as casually as I could, that she make an appointment with a fertility clinic, just in case. She did but never got to keep it as she conceived shortly afterwards and everything has gone well since. So, with an FSH level of 13.4, she conceived fairly easily twice. If I hadn’t mentioned it, she would never have known about the high level.

My first FSH test, at age 35, showed my level to be 4.6. I was happy with that and didn’t think to research it any further. We carried on with tests and treatment (we were dealing with male factor infertility) for a year and a half before falling at the first hurdle of IVF. When I went for my first follicle scan after a week of ovarian stimulation, there were only three follices. Not the 15 or so I’d been expecting. I couldn’t believe it. My FSH levels were normal so how could this have happened? The nurse checked my blood test results. Yes, my FSH level was low but my E2 (oestradiol, a form of oestrogen) was over 400 pmol/l. Normal levels are below 275. A very high E2 level can suppress a high FSH level and give a low reading. My FSH should have been retested, the nurse guessed it would have been at least 10. A further week on ovarian stimulation medication yielded no further follicles but we went ahead with egg collection. We got two eggs, miraculously both fertilised and were transferred, pregnancy resulted, miscarriage followed.

The following month, my FSH level was 17. A subsequent IVF cycle was abandoned after only one measly follicle was produced after two weeks of stimulation on the highest dose of meds possible. We triggered, tried on our own anyway. Two weeks later, two lines. Another miscarriage. Another natural cycle, another pregnancy, another miscarriage. What was going on? I wasn’t supposed to be conceiving at all with my FSH level of 17. (As for the MFI, my husband had had a varicocele ligation in the meantime and his semen analyses results were back to normal). It was retested, still 17. At this stage we reckoned IVF was a waste of time and money and invested our efforts in trying to stop the miscarriages rather than trying to conceive in the first place. I was already on Cyclogest, aspirin, Heparin, HCG shots and Prednisolone each cycle and had started Low Dose Naltrexone. I was also doing acupuncture 2 or 3 times a week, depending on the stage of my cycle.

I took a month off and took a huge dose of antibiotics, designed to combat any low grade infection in my uterus that may be hampering my pregnancies. Next cycle I took 50mg of Clomid days 3-7 and all the above meds from ovulation. It worked. At the age of 37 and with an FSH level of 17, I supposedly had a statistical probability of about 2% of conceiving and even less of carrying to term.

There was something preventing me carrying to term but I don’t think it was high FSH. I had six miscarriages in a row – what are the odds that I recruited six bad eggs in a row, that were eager and willing to be fertilised but unhappy to stay the distance?

This time around I was too chicken to test. I was just too terrified that the result would be in the twenties and that would be the end of it. We were going to try anyway so I didn’t see the point in knowing, at least not at the start. And here I am, seven weeks pregnant with a healthy heartbeat, conceived with the help of nothing but acupuncture and a HCG trigger shot on my third postpartum ovulation. I am 39.

I completely understand if my few remaining readers are reaching for the Unsubscribe button. I have done that. I’m not even sure if this post is the start or the end of something.

Wellsphere blogging scam

From www.helenjaques.co.uk:

Health bloggers bite back as Wellsphere sells on posts provided for free

Thanks to Robin for the parody of Wellsphere's logo.

Wellsphere, a health community website that brings together information from more than 1,500 medical experts and bloggers, has been sold to HealthCentral Network, a collection medical information websites and condition-specific portals.

Dr Geoffrey Rutledge, Chief Medical Information Officer of Wellsphere, generated content for his site by sending flattering emails to thousands of medicine and health bloggers (sample text “I want to tell you I think your writing is great”, “we are building a network of the web’s leading health bloggers – and I think you would be a great addition”).  Bloggers gave Wellsphere permission to publish the entire RSS feed of their site, i.e. posts they had already written, in return for exposure for their blog and more traffic.

However, the small print of Wellsphere’s terms and conditions states that by giving Wellsphere permission to reproduce their posts, bloggers automatically grant the company “a royalty-free, paid-up, non-exclusive, worldwide, irrevocable, perpetual license to use, make, sell, offer to sell, have made, and further sublicense any such User Materials[.]” (Thanks to Symtym for checking this out)

Bloggers who allowed Wellsphere to replicate their posts have suddenly realised that content they happily provided free is no longer theirs and has been sold off to HealthCentral for a profit, and boy are they mad.

Exactly how much HealthCentral paid for Wellsphere has not been disclosed, but neither company is short of cash. Techcrunch reports that Wellsphere has raised $3 million in funding from venture capitalists, whereas HealthCentral has $50 million in capital.  Bloggers are fuming that such well endowed companies haven’t given them a share of the pie, or even consulted them about the consolidation deal.

On the other hand, HealthCentral’s CEO Christopher Schroeder told the Wall Street Journal Health Blog that most bloggers “are happy and we hope with all our resources and quality-content background we will really strengthen these engagements”.  Fat chance, says the blogosphere.  Interestingly, his colleague Jeremy Shane told Medical Marketing & Media that “Wellsphere’s bloggers may be monetized through the placement of banners and other advertising”. Hmm…

For the benefit of other Europeans like me who were happily sleeping while the Wellsphere debacle kicked off in the US, here’s a roundup of the reaction across the blogosphere.

Writing on on Getting Better, Dr Val Jones asks “Is this the biggest scam ever pulled on health bloggers?”, whereas over on Science-based Medicine she goes a step further and calls for “the medical/science/health blogosphere to rise up ‘Motrin moms-style’.” (Last year Motrin, a company that sells analgesic medicines, tried to sell product to Mums who carry their child in a sling or a wrap by pointing out that this practice could cause back pain, and also for good measure said that ‘baby carrying’ was a fad that made Mums look “tired and crazy”. Unsurprisingly, Mums didn’t take kindly to this and headed to the internet in droves to voice their outrage, eventually forcing Motrin to take down the offensive advert and apologize to each Mother who had complained). Dr Val discusses the issue at more length in yesterday’s Doctor Anonymous show.

Jenni Prokopy, Editor of ChronicBabe.comis sympathetic to bloggers who feel short changed by Wellsphere’s actions. She does point out, however, that blogging constitutes proper publishing and as such writers should be thinking about getting paid and about their rights regarding copyright and intellectual property.

On Musings of a Distractible Mind, Dr Rob details his lucky escape from Wellsphere after 4 months of syndication provided him with zero extra traffic.

Theresa Chan, author of Rural Doctoringis nervous about possible sinister outcomes of Wellsphere’s approach to content. “What if they decided to compile and publish a book for sale on their site, entitled 1001 Health Tips From Real Doctors, and proceeded to include one of my posts verbatim, along with posts by a proponent of chelation therapy for operable coronary artery disease and an anti-vaccination followers of Jenny McCarthy?”, she asks.  “Their Terms of Service would give them the right to use my post in their book, and I would have no control over the implications of association with other content I strongly oppose.”  Kevin, M.D. likewise is suspicious of Wellsphere’s motives, and asks “Is WellSphere a scam, and is its leadership laughing all the way to the bank after the HealthCentral acquisition?”.

Ana, a Brazilian who writes about mental health, tried to get out of Wellsphere mere days before the storm kicked off – I wonder how she’s getting on, as diabetes patient Kerri Morrone Sparling of SixUntilMe had toresort to shock tactics to get her Wellsphere account deleted.

My Strong MedicineBeyond Meds and The Butter Compartment have all also given their two penneth on the Wellsphere scandal.

Over on Twitter there is reams of discussion on the subject of Wellsphere.  Dr. Vijay Sadasivam, who blogs atScan Man’s Notes, points out a 2007 expose of office life at Wellsphere, and TrishaTorrey notes that Wellsphere are on Twitter themselves (@wellsphere) and should be copied in on any complaints.

And me?  I was also approached by Wellsphere last year but turned down their offer mainly on the basis of their shonky web design.  I thought their homepage was completely unhelpful, giving away nothing about what the site was for, and their WellPages portals, although packed with pretty good content, weren’t exactly easy to find or navigate.  I also read a post from August 2008 on the Neurocritic blog and took heed of their gossip on Wellsphere’s employees and business approach, and read on The Assertive Cancer Patient about how ill advised it is to sign away your blog – your own intellectual property – to a company like Wellsphere.

Like the Assertive Cancer Patient, I am also a freelance writer.  Although I happily blog for free – for pleasure and as an online CV – I know that if I chose to I could sell the same quality writing, or even the exact same post, to a newspaper or magazine; thus, giving it away is just silly.

So where does this leave bloggers?  If you’re happy with the exposure Wellsphere is giving your blog then you don’t necessarily need to do anything, but most bloggers are severely irked by how they have been treated by the company and are doing their best to delete their account.

If anything, this whole kerfuffle has been a lesson to the whole blogosphere on the importance of protecting your intellectual property online (check CreativeCommons.org for more info on this subject) and on how crucial it is to read the small print.