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Petition against ivf meds cutbacks on dps card
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username123 wrote: »Again you are taking the point I made out of context. I specified that anyone who fixates on one and only one thing as the only thing that will make them happy and their lives will otherwise be ruined unless they can have this one thing, as having an unhealthy mental attitude. And i stand by that.
Not all infertility sufferers will go on to have ruined lives because of this one thing, many of them will move on, accept fate and have a good life despite this horrible medical condition. It will never be something that they forget, and there will always be a measure of sadness associated with it, but they will move on - it is a normal behaviour of a mentally healthy human being to experience suffering and then move on from that suffering.
However, for those who feel that their lives completely ruined and they can never get over this, and there is no meaning to their lives, then in those cases I would suggest that they have an unhealthy mental attitude as in the grand scheme of things there are many areas of life that can bring joy and meaning to a person, and to fixate on just this one specific thing to the detriment of all others is not a healthy attitude to have.
To get back to my original point, which was in fact a generalisation, although you seem unable to comprehend that, any kind of mental fixation to the detriment of all other areas of life, is unhealthy. That is the point I was making. I have applied it to the specific case above, but my original point was aimed at the general case.
Hi, I posted earlier in response to this. Maybe you didn't see my post.
Here it is:
I haven't read anyone on here who has said or intimated those sentiments.
I haven't actually met, spoken or known anyone online who is infertile who has said or intimated those sentiments.
People dealing with infertility are all around, living lives with quiet dignity.
Living a life that is different than it would be had they not learnt that they were infertile.
Yes infertility is a loss. A loss of being able to do one of the most fundamental things a human can do. That causes pain. What I've learnt as someone who is infertile is that the human has a great capacity for dealing with pain and joy, far beyond what I realised beforehand. It's important to understand that while we are living with infertility we are typically holding down jobs, caring for our family and friends, having a laugh, doing our bit to contribute to society, playing sports and working out on a regular basis how we're going to approach the rest of our lives.
For some of us the loss of this DPS might mean that we'll have to give up on the hope offered by IVF sooner than we had hoped.
But we'll cope. Humans are amazing at coping, truly we are.
We'll still fight the brave fight to protect any funding though, sure wouldn't we be crazy not to!
That said, I am at a loss to know where this perception is coming from and would really welcome clarification on this - is it from personal experience? Not from this thread though?
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ps: by putting the whole notion of people fixating etc.,. in the third paragraph of your response where the first relates to infertile people in a response on a thread regarding dps funding for infertility treatment, I draw the logical conclusion that you have some experience of a number of infertile people who have this reaction. Given that this is not what I've witnessed, and is possibly a misrepresentation and unfair portrayal of people who are infertile and are often subject to moral scrutiny and judgement, which is in part a reason for secrecy around this issue, I really would appreciate your clarification on this point.
I respect that our opinions diverge on the funding issue but I am keen to ensure that people dealing with infertility are portrayed accurately at all time. In the future I hope that this issue is discussed more openly and believe that this will only happen when society at large understand what it is to be infertile.
Looking forward to your response
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Rainbowrapids wrote: »That said, I am at a loss to know where this perception is coming from and would really welcome clarification on this - is it from personal experience? Not from this thread though?
Resonded to you above Rainbow.
Edited to add further clarification, I have a number of friends (some closer than others obviously), who are currently suffering from or have in the past suffered from infertility. Despite this awful condition they have all spoken of not allowing this to takeover their entire lives and are still able to draw joy from other areas of life. I strongly disagreed with an earlier point made that it was impossible for someone suffering from infertility to live a full, happy, healthy life - my experience with the issue through close friendships would lead me to believe otherwise.0 -
Username123 - thanks, we were simultaneously responding! Exciting times on boards.ie! I hope you understand why I am so eager to ensure that we are represented accurately, honestly every infertile person I've come across has surprised me in how stoic their public face is and how hard they try to deal with this honestly most difficult condition
Metrovelvet - one of the saddest infertility stories I have come across is a lady living in dignity with her husband in sub-saharan Africa, I met her in cyber-space when she was asking for information about infertility treatment, she had posted long before I came across her post so we didn't converse. It was one of the most heart-rendering stories, reading it and knowing from the tone of the post that it was most unlikely that she would ever be able to even gain some of the investigatory tests that I've been able to do with my savings from my joe-average job.
On a personal level I do donate to a charity but not infertility, actually it is a good suggestion and I'll research it. I sponser a child in Cambodia (fantastic country, had the privilege to visit it before I had to save so hard for all this treatment :pac: - ah sure maybe I'll get there again). I have sponsored her for a long time, long before we found out about this, and I guess I haven't really thought about contributing to issues around infertility as I'm only really getting around to dealing with it myself. Contributing to this thread has awakened something though, and it is an interesting suggestion around funding.
IMHO infertility would be as awful a thing to deal with regardless of where you live. Again, to be clear I'm not into pitting one illness/geographical infertility/the issue of infertility in a third world country versus other issues facing that country, so I'd prefer not to go down that route IYDM!!!
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Rainbowrapids wrote: »Username123 - thanks, we were simultaneously responding! Exciting times on boards.ie! I hope you understand why I am so eager to ensure that we are represented accurately, honestly every infertile person I've come across has surprised me in how stoic their public face is and how hard they try to deal with this honestly most difficult condition
And then we were again!!! It was in fact because I so strongly agreed with your posts that I so strongly disagreed with the point I was disputing!!!
Your posts have been extremely informative and interesting.0 -
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hallelujajordan wrote: »That is pretty far away from your opening position where you couldn't accept that infertility was a medical need ?
Not really, if the money was there Id be happy to see pretty much anything that improves peoples quality of life funded. I may not have qualified every single statement I made but its the current economic problem that leads me to saying we shouldnt be funding infertility treatment with public monies, because as a comparison with other issues its not a 'need' (ie, you wont die without it). (I still hold with that position)
But hey, if the money was there, and the country was rich - go for it.hallelujajordan wrote: »Perhaps I have helped to change your mind ?;)
Perhaps - although I feel im still in much the same place!!! Yikes!!hallelujajordan wrote: »Wow . . dangerous precedent here . . we have been exporting our abortion problem for years with our collective heads in the sand. I would hate to see us exporting our infertility problem too . .
Apples and oranges, abortion is exported due to religious and social precedent - not financial restriction.
Id look more on the comparison as (*and please note, the following statement is not to compare plastic surgery with infertility and claim they are similar, I am simply using an example of something that changes someones quality of life and is expensive*), perhaps reconstructive surgery to correct scarring? As in, I doubt anyone fundamentally disagrees with reconstruction surgery (or infertility treatment) but people do hold strong views on abortion - which is why its exported.
Im simply suggesting people may get better value for money if they go abroad.0 -
From what I have read of others experiences (haven't tried it myself), receiving treatment abroad as an option has a load of potential benefits - arguably countries with more experience and larger population base provide better outcomes, for example the ARGC clinic in the UK would be seen as strong contenders as leaders (in IVF) as would Cornell in New York (particularly in areas of male infertility) - for example the magnification used when identifying viable sperm.
Some other countries have much lax-er polices with regard to the number of embryos they will transfer, how quickly they will up your medications. They may not do as much preliminary counselling/meetings as some of our clinics here which adds time to the process. They also can be more open to providing donor options to people interested in this or providing treatment to those in same-sex relationships or who are single.
That said there are down-sides too - it can take a lot of time and additional money (in terms of travel costs, salary lost due to taking time off work - and the best clinics are unsurprisingly the dearerst, it's the market baby!).
I've never been clear on how it works with medication - I did understand that you still had to get your prescription here if you are resident here. Might be wrong on this.
In a standard IVF long protocol there is about a month of medication prior to the actual egg collection, insemination and if you're lucky enough (sadly treatment cycles are stopped all the time for various reasons) embryo transfer. The short protocol involves two weeks of medication before the above. During the last two weeks you go to a clinic every two (or sometimes more/less) days for a blood test and internal scan (pleasant
). Then you spend typically two weeks feeling every twinge in your tummy and crossing your toes with hope before testing :rolleyes:.
While the process goes quite quickly (except for the two weeks at the end!), as someone who completed an unsuccessful cycle about three weeks ago, I can confirm that you're pretty wrecked afterwards. Normally people are traipsing in and out of work and keeping it secret from their colleagues which adds to the strain.
I've been thinking about this issue a lot (natch given our debate!) and wonder how many people actually do go for a fourth cycle. For most IVF patients there would be a lot of treatments offered before this, such as IUI, clomid etc.,. depending on the nature of the infertility (if it identified at all).
In our case sadly we weren't offered any other options and this is the only assisted reproductive technique the clinic felt was suitable, but luckily for anyone afraid of finding out that they are infertile we are in the very special small percentage who are like this.
General wisdom suggests that three cycles should provide the optimum chance for success - for some people this doesn't work and they may be successful on a fourth or further cycle, but often people chose to give up at that point due to financial and emotional/personal reasons.
It is important to also bear in mind that with IVF different clinics offer different levels of testing/approaches in terms of treatment. This makes it even more confusing to the person undergoing treatment as to move clinic there is additional consultation costs, and the testing itself can run to thousands - for example immune testing, i.e. for killer cells etc.,. (only offered in one clinic to my knowledge in Ireland) blood is sent abroad and costs over a €1,000, and the AMH blood test sees your blood going to London for assessment (I think that one was about €100/€200 I've lost track at this stage!).
I wonder how many people we're talking about here as if we had an idea of funding required it might contribute to the debate. As far as I understand it we're talking about around €4,800 per cycle (this is as the first set of meds, required for treatment fell into month 1 and the second bit required for the 2 week wait was in month 2).
ALSO, and very important! A lot of clinics (in Ireland) will only treat you for a maximum of three (fresh - as in not including frozen embryos, which I am at pains to explain not a lot of people actually have, I didn't realise that before we went through this ourselves) cycles, so for someone to go through a fourth cycle in a clinic either they normally must change altogether or the clinic itself must have a strong case for believing they might succeed on that cycle (all the clinics are judged on their success rates and people chose them on that basis - private market! - so they don't like to have unsuccessful cycles if they can avoid them, not saying that they chose their customers on that basis, but YKWIM!).
While €4,800 is a lot of money (to me anyway!), if we're talking about a small minority of people, it might be acceptable to fund. If we're talking a huge amount perhaps there could be some way of managing this so that the person can pay a contributory fee larger than that required or that they could even put this through their Med 1 form and claim 20% back.
We're going to our clinic tomorrow to have a 'post-treatment' consultation and I'm dreading it as they could just tell us that's it for us (BTW, I'm also having a pleasant evening otherwise though! again the human capacity for pain and joy!).
Quite frankly at this point I can't imagine going through this process more than twice more! And as I said we are in the minority that this was our only option, so the people willing to go through the psychological, physical and money-draining treatment four times are highly motivated and I believe incredibly brave in their quest to have a family.
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