The Media And Why Blogging Matters

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One of my biggest pet peeves when it comes to medical procedures or shows on television is watching a patient flat-line and the providers yell “Let’s shock him/her!” Such a moment will have me sitting bolt upright (at best) or actually jumping off the couch (at worst) shrieking “You don’t shock a flat-line! Where the heck did you get your ACLS* certification?!”**

A close second, however, is how often cardiac arrests are successfully resuscitated on TV. A study done in the 1990s showed that around 67% of TV “codes” have a patient surviving, usually neurologically intact. Curious about the real survival rates? According to the American Heart Association, in 2013, 9.5% of adults who experienced cardiac arrest outside of a hospital setting survived to discharge. Of adults who arrested in hospital, the figure is 23.9%. These statistics, I might add, specify only that the person survived until hospital discharge. They do not address neurological status or ongoing health concerns.

Some people may think – and have told me as much – “Big deal. It’s just TV. Stuff gets exaggerated on TV and the in the media all the time.” The assertion about TV and the media is true, but I don’t think it’s as benign as that. I think when people are put in terribly stressful, painful situations and asked to make life-altering decisions, it’s harder to explain why resuscitation efforts were unsuccessful or might not be the best choice in a specific situation. It’s harder to accept death, easier to see it as a failure or something one can outwit almost indefinitely.

This isn’t to say CPR or AEDs/defibrillation aren’t useful. It isn’t to say we shouldn’t keep working to find ways to make that survival rate higher. It isn’t to say we should never intervene in cardiac arrest. It would be fantastic to reach a 67% neurologically-intact survival rate both in hospital and out.

But right now, it’s not reality.

Which pretty much sums up how I feel about IVF and the media.

For what it’s worth, IVF helped us conceive our daughter. We are, in many ways, a success story. I’m not sorry I went through the procedure given the particulars of my infertility and other such factors. My RE (the second/current one) was honest with us about our chances and the known risks. I do think, however, that there are a lot of issues surrounding IVF that need to be addressed. The media is beginning to cover some of the difficulties surrounding IVF, but there’s still a lot of glossing over the painful realities.

IVF is a useful medical treatment for certain types of infertility. It is not magic. It fails a lot – probably a lot more than people who aren’t in either the fertility industry or in treatment realize. According to the American Pregnancy Association, IVF success rates are about 41-43% per cycle for women under 35 and go down from there.  In other words, it often takes more than one cycle even in the best circumstances, something my friends and family members were often surprised to find out because there’s definitely an impression out there that IVF “usually” works.

A study came out in the Journal of the American Medical Association recently, resulting in headlines from the likes of The New York Times about persistence paying off in IVF. The study basically stated that the conventional wisdom when it comes to number of IVF rounds – that after three or four with their own eggs, people should move on to other treatments or methods to resolve infertility – was wrong. Instead, the study said six rounds – and up to nine rounds – could still offer reasonable chances of pregnancy.

So much wrong here that I’m going to largely hand it over to the plenty of other bloggers who have covered many of the angles ably. Dawn Davenport from Creating a Family points out the unease she feels around such a study. Pamela Tsigdinos sums up the real ethical problems inherent in advocating six to nine rounds of IVF. Amy Klein and Dr. Jeffrey Braverman take to task the study itself and the methods used.

From where I sit, if I was reading The New York Times article without being an infertility patient and having gone through IVF myself, I would think that IVF pretty much always resulted in a baby. Even if for some people, it obviously took awhile. I would think that six to nine rounds might be a reasonable number based on the media reports. The researchers from the study certainly give that impression, as this quote from Dr. Scott Nelson implies: “For most couples – and certainly those where the woman is younger than 40 and those of any age using donor eggs – two-thirds will achieve a live birth after five or six treatment cycles. This will take, on average, two years and is similar to rates that couples conceiving naturally take in one year.” Sounds like a reasonable sacrifice.

Except that I have gone through IVF and I have a much better idea of what six to nine rounds entails. The reality is that in a country where IVF is rarely paid for by insurance and people have to save up for each round, the two year timeline Nelson mentions is laughable. It’s also nothing like people who get pregnant naturally and don’t have to take the time off work and live their lives around clinic schedules for the countless monitoring appointments, egg retrieval surgeries, and transfers. I know firsthand living around clinic schedules for a longer term takes a terrific toll on life. While the 65.65% birth rate after this many cycles is trumpeted in the article, there’s barely a mention of the 30+% who will do all of this and still leave with no baby. This is not a small number.

As an infertility patient, media coverage that largely focuses on the success rates of IVF frustrates me. I know perfectly well that we could have walked away from treatment with no baby and it would not have been from a lack of trying or from something we did or didn’t do. It angers me that so many people outside of the infertility community are given the impression that having a baby is something controllable with enough fertility treatment or persistence (again, roughly 34% did not even at the extremes in the study).

In a large part, this is why I keep blogging. I periodically go through the sort of survivor’s guilt questions inherent in having managed to conceive and give birth to a living child after infertility of whether and how I can contribute to conversations about infertility. It’s one of the internet’s finer qualities that smaller, more niche voices have a place in the conversation and are being heard more often. I figure that speaking up to offer a firsthand perspective about the many difficulties inherent in IVF and infertility and an opportunity to counter some of the misguided impressions is definitely reason enough.

It would be fantastic to reach the point where there is as much reason to be optimistic about IVF as the media depicts.  Until then, I’m glad that people in the infertility community are able to correct and discuss these reports, as well as sharing their stories.

*ACLS stands for Advanced Cardiac Life Support

** It really is not ACLS protocol to shock flat-lines. Basically, a shock is done to induce a brief flat-line (asystole). The hope is that then the natural pacemakers of the heart will take over to produce a rhythm that will pump blood to the vital organs of the body. Think of it like rebooting a computer. Rebooting works when something is messed up in the system, but will not work if the computer is not on at all.

If you want to check out more Microblog Mondays posts, head on over to Stirrup Queens to join in !  Thanks to Mel for hosting and originating Microblog Mondays.  

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16 thoughts on “The Media And Why Blogging Matters

  1. This is spot on! How do they have the courage to even suggest 9 cycles??! At least my RE told me on my first consult that each cycle has about 30% chance and after 3 cycles about 70% of the couples would have a baby, so I wasn’t so naive. It’s sickening to think a doctor would say 6 cycles take only 2 years and is similar to rates of one year of trying naturally. If only they were also similar financially, physically or emotionally!

    • Yeah, the 9 cycle thing really got me too! I mean, that’s a lot of cycles with still a chance of success that’s a lot lower than I would have hoped for that much time/money/effort. And yes, the 2 year thing sort of surprised me – I suppose one could do 6 cycles in 2 years if there were no cancellations/miscarriages/etc, but I don’t think it’s very realistic. Like you, I couldn’t help but read that quote and think “yes, in purely mathematical terms that’s true”, but in human terms, it’s really a sort of unfair thing to say!

      Thanks for your comment

  2. YES!!!! Cheering you on with this! I was screaming when I read the NYT article. Screaming and swearing. I what world is 9 cycles of IVF for a 60% success rate considered good? This should have been a call for change within the fertility industry, not something to praise.

    Thanks for adding your voice to this. It is another one that is sorely needed.

    • “I what world is 9 cycles of IVF for a 60% success rate considered good?”
      In a world in which there used to be no IVF; i.e., the one in which I live. In my world, fixing people is often quite a hard problem (and in my case, frequently completely infeasible), and to be able to sometimes, maybe, help someone is no small feat.

      While I certainly believe that the fertility industry needs to undergo serious change, its overall success rate (or lack thereof) is not first (or even 10th) on my list.

      • I hear this, JC, and I don’t think IVF is evil or wrong or shouldn’t have been done, and I do think it can be a useful treatment in particular circumstances (obviously, it worked for me). I don’t think it’s a small feat to help someone, even a very limited number of someones, but I do think that there’s a sort of pushing of hope at times and heavy focus on positive outcomes that can be damaging and problematic.

    • Cristy, like you, I still don’t think 9 cycles with a 65-66% success rate is a good thing or something to be excited about. Especially with long-term health implications of so much hormonal stimulation (among other things) still not entirely known.

      There’s also, for me, a serious problem with the payment system in the US fertility industry. While there are people with insurance to cover parts of this, one of the aspects of 6-9 cycles is that it is absolutely unrealistic for many people financially under the current system to consider so many rounds. I felt like the NYT article really didn’t talk about the actual cost of such treatment (for me, it would have been $100K+). It felt like dangling a very alluring carrot and not talking about how amazingly out of reach this is for so many people.

      Thanks for your comment.

  3. While everything you’ve said is true, it’s just not how I feel about ivf. I see ivf as just another medical treatment. It’s a treatment that offers hope for many people but cannot overcome all barriers. Ivf cannot overcome advanced maternal age and bad eggs or severe uterine issues, but i dont think it claims to. Mostly, the information around success rates is ethically and correctly presented (at least in Australia they are). Sure there are some cowboy Dr’s who try to say they can guarantee you a baby, but I think they are a minority.

    I went into ivf knowing that it may never succeed for me. I knew my odds and planned my treatment accordingly. I decided I would do up to 6 fresh cycles because I had a good income, coped well with ivf and most importantly, i produced good embryos. If any of those factors had been missing, i would have set my limit much lower. My plan then was to move onto donor eggs with a chosen family donor. Three fresh cycles, 8 transfers, one miscarriage later I am 21 weeks pregnant with twins. I am extremely grateful to ivf. To even have the chance to try.

    Ivf is not a guaranteed treatment. When we sign up we take the chance that we only might have a family. It’s never a promise. If a dr offers a treatment for a cancer and says ‘there’s only a 30% chance this will work’, do we blame the medical fraternity when it doesn’t work 70% of the time? Generally no. We thank the dr for trying. I get that people feel differently about ivf because it’s expensive private treatment, but no one is lying about our chances, and just because we pay for this treatment, doesn’t change the science.

    However I do agree people who suggest doing 9 cycles are probably not living in the real world. I also feel that there needs to be better counselling associated with ivf treatment.

    • Thank you for your response and your experience. I’m glad things were better for you and congratulations on your pregnancy!

      I’ve mentioned this in a few of my replies below, but part of my issue stems from my experiences with my 1st/former RE, who would give me technically accurate odds but then follow with something very hopeful about the cycle. In a couple of cases, when I tried to be more realistic, he very much implied that I was being overly negative and I needed to be more hopeful. It meant that while I was getting technically accurate information, I found myself being deeply swayed by some of his “hey, this could be your cycle!” Like I’ve said, I’m not willing to say this was deliberate on his part, but it definitely caused some less than realistic expectations at times and consequently more emotional pain when things didn’t work out.

      I don’t blame my REs for my cycle failures or my miscarriages. I knew going in that those were a possibility (even a probability). What I did find hard was being told by that first RE that I had *such* a good chance of things working, being told not to worry so much, and then miscarrying. It really skewed my emotional state towards thinking “hey, if this noted doctor thinks I should be hopeful, then I should be hopeful” instead of allowing me to guard my emotions and proceed rationally based on the cold, hard stats. I do want to say that my 2nd RE was much better about not playing to my emotions and giving me realistic timelines/assessments.

      The NYT article, I felt, skewed towards that “technically accurate but pushing hope” situation. I’ve often felt that the media tends to focus on success and miracle stories (which, truthfully, probably sell more papers) instead of really showing that in a fairly sizable number of cases, people can’t have kids through IVF no matter what. There’s also very little focus on the fact that IVF is useful for specific forms of infertility – not all. IVF, I’ve found in the US media, is billed as a treatment for *most* infertility, so laypeople often don’t understand when it doesn’t work, leading to less support for those who step away or for whom it doesn’t work.

      Thanks again for your comment!

  4. I think Emma is actually proving your point. She was well aware of the success rates, and the risks, and set her own limits. She is also in Australia, which I think has a different system from both NZ (where I am, and where IVF is very closely regulated), and the much less regulated (if at all?) system/industry in the US. It is my impression that women in the US (for example – because that’s what I compared the NZ system against) are not given full, transparent access to information. High drug doses (for stimulation), for example, are commonplace, recommended by doctors, when actually most studies show that, beyond a certain point, the higher doses are not reflected in better responses to stimulation.

    But this is not at all what is conveyed in the media. I wholeheartedly agree with your post, and I’m very pleased you’ve written this. And I really like your comparison with ACLS, which I think is very apt.

    • The US system of giving information is very dependent on the physician/clinic. While stats are out there, it’s tricky to really assess a personal set of stats, which may be more or less than the averages for age/diagnosis/etc depending on personal factors. My 2nd RE was far more realistic and honest with me, but it’s scary how dependent people are on their particular physician.

      I agree with you that one of my issues was that while I was given *technically* accurate stats by my 1st RE, he would follow it up with some very hopeful verbiage that, while I wouldn’t go so far as to say was deliberate emotional manipulation, essentially had that effect on me. I feel like while my 1st RE met the most technical outlines of giving accurate information, he also definitely had a bias and an emotional appeal that made it hard for me to pull out the realistic odds and plan carefully. Anytime I mentioned that I might need more than 1 IVF cycle, he would say, yes that was possible but he thought that everything looked promising for just one and I needed to be positive going in to this. Technically true, no promises made, but with the pooh-poohing of my attempts to be realistic emotionally, it made me feel as though hey, one cycle really might do the trick, thereby raising my expectations quite a bit. Add to that the media portrayals of IVF as working more often than it does, and it all adds up to a very skewed perspective on real odds and less support for patients, which frustrates me immensely. I felt as though I got neither realistic perspective from that 1st RE nor the media.

      Thanks so much for your comment!

  5. I love, love, love this post. Thank you so much. As someone who did IVF hard and left without a baby, I am frequently frustrated by the way IVF is portrayed in the media, and by the way donor gametes are portrayed as well. I am frustrated by centers that imply that you can get pregnant if only you are willing to “do what it takes,” that they WILL get you pregnant if only you stick it out long enough. I had a second opinion that basically offered this opinion. IVF is hard, and costly, and by far not a sure thing, and sometimes you can do it over and over and not really be given a great reason for why it fails. I did 13 cycles and 10 transfers and no one ever said “Maybe this won’t work for you.” Lots of people were like, “keep the faith!” and because technology keeps changing and new protocols come out all the time, it is really hard to say, “this isn’t going to work for me.” When the media misrepresents IVF, success rates, and what it truly entails, it keeps myths alive that can be truly detrimental to those trying to figure out what next steps to take and if they have support. I would not say that the number of cycles we did was at all advisable in hindsight, but I was always encouraged by the medical community that the next one might be THE one, even though after so many cycles surely there was a pattern and a diminishing set of returns. Recommending 6-9 cycles seems downright irresponsible. I loved your flatlining/shock comparison. I just loved this post, period.

    • Thanks for your response! I think there’s definitely a perspective from the media to look on “the bright side”. And I also think that there can be a sometimes subtle – or at times, outright – undercurrent of “but the next cycle will work!” My 1st/former RE did this at times, and it very much colored my perspective of IVF. While he would give truthful cycle odds, he would then follow it up by saying something that decidedly implied he thought this would be “our” cycle. And I wanted – very badly – to believe him. While I’m not willing to say that it was *deliberate* emotional manipulation, that was the net effect of what it did to me. To me, the article uses that same sort of technique.

      I worry that this study will cause some REs *not* to look at individuals and possible underlying causes for IVF failures early on in treatment and just to basically say “well, this major study says to keep going”, exhausting people’s time and money when something could have been diagnosed that would have made stopping a good idea or a different technique/medication/etc advisable earlier on.

      I also hear you about the medical community – while my 2nd RE flat out told me he recommended me stopping after 3 fresh IVFs unless we had new info that would make a cycle more likely to succeed if we reached that point – there are unfortunately some like my 1st RE who, while technically giving accurate odds also do some definite dangling of hope that makes it very, very hard to stop when it’s something a patient wants so much to work. And, like you mention, this gives fire to the IVF clinics that outright state (and, I’d say, misrepresent) that if a patient keeps at it, it will work. I’ve never forgotten reading an article from a leading RE in the US that included a sentence to the effect that “for those for whom IVF hasn’t worked (yet)” and feeling floored because it doesn’t always work. The media, I think, contributes because it’s not only these doctors, it’s also public opinion, leading to less support for IVF patients that decide to step away. And that’s the issue. I feel like the media needs to perhaps be counterbalancing some of these unrealistic expectations that are being put out there by a segment of the fertility industry.

      Thanks again!

  6. Katherine,

    I love nearly all your posts—they are such beautiful and thoughtful treasures. But I am rather startled by this one. I, too, read the NYT piece, and except for being irritated by the title, I thought it wasn’t badly done. (This is said with the caveat that reporters and journalists are unlikely to have any ability to critique the quality of the underlying study they are writing about, whether it be on the basis of study design, actual technique, or statistical issues—so the bar is already set fairly low.) Anyhow, I was sufficiently puzzled by your response (and those in the blogs you linked to) to go back and read the article again. And still, I am surprised by how much strong emotion this particular article has raised: it seems to me that the author spent a substantial portion of her total space (close to 40% by text volume) *not* focusing on success rates, but rather on the financial, medical, and emotional issues accompanying IVF.

    After multiple readings of the article and your post, I wonder if, fundamentally, there’s a certain—for lack of a better description—‘cultural mismatch’ going on. I say this because you write:

    “…From where I sit, if I was reading The New York Times article without being an infertility patient and having gone through IVF myself, I would think that IVF pretty much always resulted in a baby.”

    Whereas I read (in the 2nd paragraph of the NYT article, so it’s in no way hidden):

    “But a large study…has found that nearly two-thirds of women undergoing I.V.F. will have a child by the sixth attempt, suggesting that persistence can pay off, especially for women under 40.”

    In my mind, a nearly 2/3 success rate after 6 cycles is automatically equivalent to a >1/3 failure rate if you do 6 or fewer cycles; given that the nominal result of the study is that live birth rates don’t fall off as steeply as many people expected past the 3rd failed cycle, I myself might have written something similar (i.e., given the success rate, as opposed to the failure rate). To me, writing that “persistence can pay off” doesn’t imply that persistence does pay off, but rather that “being persistent beyond 3 failed cycles isn’t entirely stupid”. So, my takeaway from that 2nd paragraph is something more along the lines of, “if you have 3 failed IVF cycles your situation may not be as grim as we thought, but there’s still a pretty big chance of not making it to live birth”.

    As you can see, your response is very different from my response. (To be clear, I’m not criticizing or judging your response, or saying that mine is better—not at all. I’m just very startled by the extreme divergence of our responses.) And I’m curious where that difference arises from.

    For what it’s worth, I wonder if money were not nearly as large an obstacle, and the unknown risks of IVF were somewhat better quantified, would people be as upset by the notion of 9 IVF cycles? For me, my perspective is almost certainly skewed by my experience: despite being in the U.S., I was lucky enough to have insurance coverage for 2 IVF cycles, plus effectively unlimited bloodwork and ultrasounds, as well as a fair bit of pharmaceutical coverage. Also, I had a RE who is very conservative (he hates OHSS with a passion, and I am a prime candidate for it) and was quite willing to follow my admonitions to dose on the super low side—cumulatively over my 5 fresh IVF cycles, my total gonadotropin dosage was likely less than what most over-40 women get over 2 cycles (and probably ~40% of what most women in my age range were getting), which in my opinion probably reduces some of the risks. In total, over 14 months, I had 2 natural cycle IUIs and 5 fresh IVFs (including a late-1st trimester miscarriage that cost me 5 months, 2 chemicals, and a cycle that was canceled the day before retrieval)….And for me, it honestly wasn’t that bad. Better, in many ways, than most of my first three decades. Not my idea of fun, but interesting. And it was far, far easier (physically, emotionally, psychologically) than trying to hang on to my twin pregnancy, or the first 2 years after my twins were born. When my husband and I think about having more children, it’s not the IVF that worries us—it’s surviving another pregnancy and infancy that makes us want to curl up in a ball under the covers.

    I also wonder how much of what I think of as starting-line perspective affects one’s final viewpoint of the entire process. I asked my RE to give me an eyeball estimate for per-decent-looking-day-3-embryo success odds, given my age and diagnosis; he threw out a figure, and that converted to an expected ~5.5 SETs. So we went in expecting that each cycle would fail, which in many ways made those failures less painful.

    • I also have been surprised at the divergence of responses that this article has raised – and I really appreciate your thoughtful response here. I completely agree with you that the money makes a huge difference and in my case, was a major factor. I had zero insurance coverage for infertility treatment or medications and it meant that each cycle that failed sent us scrambling to figure out how to afford the next one. We were incredibly fortunate that we could afford it at all, so I definitely want to say that, but there’s no doubt that finances caused a huge part of the stress. Six to nine cycles would have been far out of reach for us.

      It’s also worth mentioning that my 1st/former RE and I had some serious issues. He would give us figures on the high side of reasonable (for example, telling us we had a ~25% chance of pregnancy with an IUI, not an unreasonable estimate) but then follow that by saying something to the effect that he felt it would work for us. For example, I remember clearly in the first meeting saying I knew it would probably take some time (I had already flamed out on clomid and femara, so I knew I had some problems) and him sort of agreeing with me but following it up by saying that he felt he could hopefully have me pregnant by June (3 months hence). It wasn’t just me, I had a co-worker who was also seeing him who was doing IVF and told her that he thought she would have twins, no issues at their initial meeting (she ultimately miscarried). When we talked IVF, I told him specifically that I had started a new job, what that job entailed and asked very pointedly how IVF would affect that. He did not reveal a very significant lifting restriction that did have an impact…something that if I had known about when we were making the decision about when to pursue the cycle, would have affected when we chose to start the cycle. I’m not accusing him of deliberately hiding things, I mostly think he just didn’t listen to me at all or treat me as an individual. I have zero doubt that this colored my experience of IVF.

      I think you’re definitely on to something when you wonder about the starting line perspective – I really think that if my 1st RE had said “I really think IUI could work for you over about 4 rounds where we can trigger, but we’re probably looking at a couple of cycle cancellations because of PCOS ovaries being tricky to stim and you’re looking at using gonadotropins, so about $2000-3000 a cycle. If you go IVF, you’re realistically looking at probably 2, maybe 3 cycles given your age/diagnosis. Here’s what each thing would entail.” I might have had an initial panic of sticker shock but been better able to plan. Instead, at every turn, I was reassured that the next round would probably work, details that were very important with my job situation were not communicated in a timely manner…and when I got pregnant on my first IVF, I *knew* in my bones something felt “off” about it. I was dismissed, told I needed to stop worrying so much…and then, of course, miscarried. I think a great deal of my frustration comes out of that experience. It’s also worth noting that with my 2nd/current RE, he spent the time to listen to me, treat me as an individual and work with my wants/needs/job in the process – and no surprise, things went much more smoothly, even when I had an ectopic pregnancy my 1st cycle/FET with him. I don’t blame either of my REs for my cycle failures at all – that was a risk I took coming in. I tried to go in with the expectation that the cycle would fail but was told repeatedly in various, sometimes subtle ways, by my first RE that I needed to stop thinking so negatively, that I had this great chance of things working and so on and so forth. It definitely threw me off balance and probably gave me some false hope – whether that was intentional or not on his part, I cannot judge accurately. My 2nd RE was much less “oh, this is going to work” and I was, like you mention, better able to cope with the failure. Part of my issue with the study/NYT article is that I suspect there are REs like my 1st one out there who are communicating the “bright side” of this to patients on the fence.

      Thanks again for your response!

  7. This is a pet peeve of mine, too, and I’ll begin by saying that I likely do have an unrealistic understanding of cardiac arrest and success rates due to the media. If it’s portrayed in a certain way, you believe it to be a certain way.

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