Sunday, September 7, 2014

Random thoughts

When my husband and I scheduled our first RE appointment, we weren't exactly sure what to expect, beyond that there would be a bunch of tests.  We did all of the tests and scheduled our follow-up appointment to go over the results.  The doctor started out with Mr. Bent's results where he informed him that his sperm looked more like that of a man 10 years younger.  Off to a great start.  Then he started with my results.  He threw out a bunch of numbers with little to no explanation and then informed us that our next steps were to try a high stim cycle "just to see if it worked" and then on to IVF with donor eggs.  No "I'm sorry to tell you this," no "do you have any questions," no compassion or empathy whatsoever.  Then we were shuffled out to "talk to" the IVF nurse who went through the whole process at warp speed and then gave us a one page sheet with instructions and told us that if we were going to start the process during the next cycle we would need to make the decision in full because things had to be paid in advance before anything could start.  After that we were shuffled to the finance guy who again informed us that everything would need paid in advance since our insurance didn't cover anything, gave us price sheets showing all of the costs, and information about financing (which I joked probably had a 27% interest rate and could be paid in 120 monthly installments).  We walked to the car in a daze and had made the decision that IVF was not for us before we even pulled out of the parking garage, and even with hours of research it didn't change.*  We didn't have the emotional fortitude to endure IVF, which for us, had a less than 10% chance of being successful, and we felt it was irresponsible to completely drain our savings (plus a bit) to put ourselves through something that would likely be unsuccessful.  That was in March.  We've not second guessed our decision once.

I really didn't think about IVF again until this weekend when I read two articles, one on HuffPost and the other on NPR, about egg freezing and shared risk IVF, respectively.  I also ventured into the Facebook comments on the NPR article.  I fully expected to find what I did in the comments, but I didn't expect people to so vehemently disagree with assisted reproduction and attack those who chose to go this route.  It was vicious and it made me realize why I prefer the company of my dog to that of most humans.

The HuffPost Article about Egg Sharing was a huge eye opener about something that didn't even occur to me about being an option.  I mean, I've heard of it, but only within the context of cancer patients.  The author of this article went to a informational session/cocktail party at a swanky New York City hotel.  Literally something this important and life changing was discussed over cocktails.  I'm all for a good cocktail and I'm certainly not a prude, but I think that alcohol and big decisions don't mix well.  Anyway, from the tone of the article, it seemed apparent that the informational session glossed over some really important details while simultaneously overestimating the potential for success. In short, it really seemed to me like this company did a fine job of misleading these women. I just find this deeply disturbing.  I mean, if a woman wants to freeze her eggs, by all means do it, but make sure you are educated beyond one-sided facts presented to you by a company who is far more interested in your wallet than your family building plans.

The NPR article about Sharing Risk was eye opening to me as well.  In the program discussed in this article, couples can pay a flat fee for up to six cycles of IVF, and get their money back if unsuccessful.  The premise of this program is that the couples who get pregnant the first cycle essentially subsidize those that it takes longer for.  This seems like a relatively "good deal" but I also question putting a woman through that many cycles of drugs, presumably increasing every cycle.  It just seems dangerous given that there is little to no research about the long term effects of messing with hormones in such a way.  I would also be interested in the "eligibility criteria" for this program, which, other than age, is not clearly outlined on the website.  The cynic in me figures that this program is aimed at couples who have a good chance of success anyway, thereby increasing the clinic's profits.

I guess there's really not much point to this post.  These articles really opened my eyes.  I figured out early in our experience that it was about our ability to hand over money to the clinic as opposed to building our family.  I worry that couples desperate to have babies are being taken advantage of.  I worry that success statistics are being overestimated.  I worry that couples are given misleading facts.  I worry about the long term side effects for women who have undergone IVF.**  I think that women need to be better advocates for themselves when it comes to fertility and I think that the medical community needs to do a better job of presenting accurate information when it comes to fertility.

*This was the right decision for us.  I'm a firm believer that all couples should make the right decision for them and that no couple should be judged based on whether or not or how far they decided to go down the ART path.

**I hope this paragraph didn't sound judgmental.  It wasn't intended to be.

8 comments:

  1. I felt very misled and used by RE businesses when I was going through the IVFs. Based on my personal experience, IVF patients subject themselves to sometimes borderline abusive treatment and are turned into human guinea pigs slash cash cows considering the current level of reproductive science. You were very smart by refusing to buy hope and actually weighing your odds and making a rational decision.

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  2. I am so sorry that you went through what you did. It's bad enough to deal with all of the baggage that comes with infertility, but I can't imagine also feeling used by your RE. I think you nailed it on the head when you called your RE a business. They are a totally a business. All of them. Their primary focus is turning a profit, and if a few women manage to get pregnant in the process, that's great for their statistics!

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  3. Thanks, Bent. It's still pretty fresh in my memory and I'm still processing and healing from the experience. You know, when I told my doc about my quitting treatments she started convincing me to go to 'insert a known university here' and ask them to do some studies (i.e. experiments) on me so they can maybe learn something with no guarantees of success for me but it could help future patients. I'm sure it would help with data for their publications as well. And I would have to pay for everything out of pocket, of course. No thanks, I've done my fair share of serving RE science so now I can get my life and my body back. I think what the future patients really need is a more regulated RE industry.

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    1. My RE's practice is located in a University hospital and he is on the faculty at "Large Well-Known University Medical School" and I was also encouraged to participate in research studies so I could "help women in the future," also at our cost for all procedures and medications. I'm all for research (it's part of what I do in my job), but I have a hard time believing that there are no harmful effects from participating in the study (e.g., long term financial and/or mental health). But maybe they get away with it because it's something that people would do anyway? It's sad.

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  4. I agree with Obie -- you were smart to weigh the odds & make a decision that was right for you.

    Do you read Pamela's Silent Sorority blog? You might find her latest post interesting:

    http://blog.silentsorority.com/customers-patients-doctors-scientists-see-markets-people/

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    1. Welcome, loribeth!

      I do read Pamela's blog, though I haven't in a while. I love her blog and her book! Work and life have been hectic for the past several weeks (my job is in academia and it's the beginning of the school year) and I haven't had much free time. I'll venture over there at some point today!

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  5. We all have our limits - some people don't even seek medical assistance, others can't move to IUI or IVF, others struggle with the idea of donor eggs/sperm/embryos, and for others the limit is adoption. We all know what's right for us.

    And I've said it before but I'll say it again - I am very grateful that the NZ industry is strictly regulated, and that played a big factor in how far we went.

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  6. I think it's important for women (and couples) to stand their ground and not allow themselves to be pushed beyond their limits. I wish that the industry was more strictly regulated in the US. Here it almost seems like we're pushed to make important and expensive decisions very rapidly and without all available information. It's almost predatory in a sense.

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