How to Make a Family: The Blog

Teaching Ethics to & Instilling Morals in Scientists. After the Fact.

I'm reading Challenges for modern scientific writing and editorship: have we lost our moral compass? on Reproductive BioMedicine Online.

My random thoughts as I read this apparently necessary finger-wagging by the editorial staff of RBM Online: 

They're using Wikipedia to start their definition of scientific misconduct. Hm. Huh. (No opinion here, just stating the facts...) That is certainly reflective of a shift.

I'm often asked how I can write on the same topic (fertility and reproductive medicine) for 15 years without copy-pasting my own stuff over and over. Seriously? I can manage to do that (not plagiarize myself) for things like consumer blogs and magazine articles by the hundreds, but researchers can't do it for high-brow study articles? Maybe it's yet another benefit of my sieve-like brain... I can't remember from one day to the next if this is the first thing I've written about oocyte cryopreservation or the 20th, let alone know on which hard-drive any previous files exist. But ask me what's in my pantry and fridge, any time, any day. 

I will admit this: my own kid, who is precociously bright with an advanced wit of his very own, sometimes posts things on his Facebook page that make me wonder... So I ask. Maybe too often. "Did you make that up?" It's clear that there's a little generation gap on this topic.

Glad to see they're offering "workshops on scientific writing at international conferences that focus not only on how to write a scientific report but how to do so in an ethical and responsible manner." It would be even better, though, to start that educational process a little earlier, like, maybe in elementary school.

Should You Borrow Money From Your Doctor For Fertility Treatment?

Does it matter to you how your fertility treatment is funded? I'm trying to remember if it mattered to me, 14 years ago. Sure, it's one thing for me to comment now, almost 13 years after finally, finally having that baby that I'd tried to have for 5 years and through 4 miscarriages. 

Hopefully without embarassing my son's dad (we're long divorced now, but still friends and co-parents of The Wonder Boy), I'll let you know that we were not in a financial position to even consider IVF after that last miscarriage. And PGD was in the pipeline, only available within clinical trial, and man, oh, man, was I willing to donate my body to science by that point. Of course, as soon as I started to explore that path (which would've been a long road to nowhere from Houston, I know in hindsight), I wound up pregnant again (our last ditch on Clomid with heparin shots) and he stuck. 

So the question of how I could afford to get pregnant became moot to me. But it's been impossible to stay in this line of work and not think about it every time another related story comes up.

Is the drive to get pregnant so visceral that we really don't care HOW the process is paid for? 

The question came to mind again when I read this Wall Street Journal article by Jessica Silver-Greenberg. She talks about the booming business of fertility treatment financing. Nothing new, and after all, I was employed for several years as the newsletter editor of IntegraMed America, one of the oldest and biggest vehicles for people who aren't flush enough to shell out tens of thousands of dollars for multiple IVF cycles. To clarify, IntegraMed America isn't a bank or even a lending company. Rather, as the article explains: 

"IntegraMed sets up couples with loans through a partnership with Springstone [Financial LLC] and NBT Bancorp of Norwich, N.Y. The partnership's number of loans jumped 41% in 2011 from a year earlier, and totaled $15.4 million."

I have no problem with people financing their medical treatments. In fact, I'm one of the too many in this country without a speck of health insurance. I know very well why the medical loan and medical tourism industries have blossomed. But there's one part of this WSJ article that prompted this conversation with my faithful listener, The Roommate:

Me: "I just read in the WSJ that loans made to patients by companies who are backed by private investors aren't monitored by the same Federal or state agencies that oversee banks."

The Roomie: "Yeah?"

Me: "And what's even crazier is that some of those lending companies are funded by the doctors whose clinics offer the loans."

The Roomie: "Yeah?!"

Me: "Isn't that a conflict of interests?"

The Roomie: "No. That's a coordination of interest."

Me: "And the docs aren't required to disclose this information to their patients!"

The Roomie: "Wow! Those doctors are pretty smart! Win-win-win!"

Is it me?
Signing off, From the Pollyanna Department

Never Mind The Menopause. There's A Tsunami of Children.

I ran across this synopsis of fun facts about reproductive stuff via the headline "6,000 Women A Day Hit Menopause" -- and believe me, that's definitely not the most entertaining tidbit in the piece by Leslie Mann on the Baltimore Sun. In fact, I'm not sure why they chose to pull that one data point from the American Congress of Obstetricians and Gynecologists' "2011Women's Health Stats and Facts" to highlight, except that the editors might think it's alarming. 

Why do we think menopause is alarming?? Tons of reasons. Don't get me started. But for the record, I don't think the absolutely natural and normal cessation of menstruation and fertility warrants headlines. If it were up to me, I'd have pulled this fact to head up the article:

"Assisted-reproductive therapy, or ART, an infertility treatment, is on the increase, catering to women with an average age of 36, and resulting in more than 600,000 babies a year."

600,000 babies a year. From ART. 

Y'all know me. An earlier sentence in the piece ("Only 12 percent of women suffer from infertility.") had me grumbling and mumbling about how 12% isn't nearly as high as the industry likes you to think and how it all depends on your definition of the terms. I'm up to here with other headlines that shriek about infertility being "on the rise", while The Roommate (a much real-er scientist than I) says 12% is indeed pretty impressive.

When I got to the paragraph about offspring and read that aloud to The Roommate, he exclaimed, "600,000?!"

Me: "Yep. Crazy, huh?"

Roomie: "Yeah! That's like, like, like a..."

Me: "A tsunami?"

Roomie: "Yeah! A tsunami of wanted children!"

And I smiled. 

And that, my friends, is how perspective adds up to everything. And, fortunately, how quickly mine can change on a good day.

 

Quick Hit: Pioneers Have More Babies

While you're wondering and worrying about why you and yours are having trouble disseminating your DNA, here's a short blogpost about an interesting population study, kindly passed on by my scientific Roomie.

It's not so helpful in terms of your own fertility struggles to know things like "Pioneers tend to have more babies" -- but data about unassisted fertility in populations might give you pause to think.

I wonder all the time about long-term consequences of reproductive medicine success in terms of the species. Part of that's the influence of my roommate, the mathematical biologist, but related notions have been bumping around in my head since way back when I was trying to force my own DNA to descend. 

Do you ever wonder what the Big Picture will look like for humans once we've truly nailed this whole "I want a baby, therefore, I will have one" thing? I ponder it constantly. Beyond the concept of "rights" -- the umbrella question is how will we wind up once we're decades past adherence to "laws of nature"?

If you're not up to reading the blogpost or study, here are a couple of snippets:

The study analyzed marriage and birth records in Canada’s Charlevoix Saguenay Lac-Saint-Jean region (northeast of Quebec City) and found that “families living on the edges of the expansions had 20 percent more children than families living at the settlement’s core. They also married one year earlier, on average, and contributed up to four times more genes to the region’s current population.”

and

Pioneering ancestors with high fertility had children who also eventually had high fertility...

And Always Let Your Conscience Be Your Guide

You grew up thinking all doctors were devoted altruists, right? That they go into the medical profession to devote their energy to helping people -- not to make money. Okay, maybe if you grew up in the 80's or later, not so much, but a whole lot of us had those crazy thoughts, which explains the fussing and fretting when docs became legally allowed to market their services.

You didn't know there was a time when that was illegal, huh? (You know, it kinda sucks when I can no longer refer to myself as prematurely gray...)

But yes: Prior to a 1977 U.S. Supreme Court case (Bates v State Bar of Arizona), it was illegal for certain professionals (like doctors) to advertise or market their services or fees. Ah, those were the days.

Granted, most docs were slow on the uptake of selling themselves. That might be a little proof that, indeed, most physicians consider the practice of medicine to be a privilege bound by an ethical oath. But I don't know.

Today I learned that the Association of Reproductive Managers who attend the annual ASRM gathering will be taught the secrets that Disney knows for making happy customers. 

Reproductive Managers go by a few other similar names, too -- for example, Practice Manager or even Executive Director -- but they all share in common the tasks of running the business end of medical practices. RMs are all about keeping the lights on so your fertility specialist can see during exams, and about keeping those nurses paid. 

They're also about managing the creation of more business. After all, even though some of us unlucky infertile souls spend years and years cycling in and out of the clinic doors, most of us are only there for a year or so before moving on, one way or another. And let's face it: reproductive medicine is elective medicine. (You may want to die if you can't have a baby, but you won't really meet your Maker just because you're infertile.) So no matter how many people are struggling to get pregnant, there's always going to be a need to replenish the supply of patients. Kind of hard to believe, isn't it?

Speaking of make-believe: Who better than Disney, American marketing royalty, to impart inspired techniques for bringing both a dreamily hopeful smile and a poignant tear to the faces of millions?

Personally, I'm glad RMs exist. I like the thought that physicians can go about their healing activities without having to worry about (at least on a day-to-day basis) whether the janitorial staff was paid. And now they'll come back from ASRM whistling, "When you wish upon a star..."

I Just Want You All To Have Plain Ol' Health Insurance

At the risk of sounding like a crabby old mama who finally got hers and has no memory left, I feel compelled to finally say what I think about the notion of insurance for infertility treatment. 

Okay, it's not exactly the first time. But it's been awhile, and I don't think I've ever approached the touchy topic from this angle.

"Touchy?" you ask. What could be sensitive about insurance coverage for medical treatments that help men and women achieve what's supposed to be a natural life event, namely, procreation?

Most readers of this blog already know that most people have no insurance coverage for infertility treatment. It feels unfair to those who want that coverage. Even people with huge policies can't get their fertility treatment paid for. It's an old story and one that's been hammered on for decades now by advocates and patients and, sometimes, physicians who each year encourage legislation at different levels that will presumably, one fine day, make all things equal.

So what nudged me over the edge today?

An innocent Facebook post by RESOLVE, echoing the sentiment of Parents Magazine in wishing that all states would mandate fertility insurance coverage. (For those of my friends not in know, some states already do...)

Anybody ever vote for elected officials here?
Ever heard of "divide and conquer" as a strategy to defeat a group's ideas?

Folks. Are you aware of the current situation in this country regarding plain ol' ordinary health insurance?

From CNN's The Chart, March 23, 2011:

"Almost 50 million Americans are without health insurance– 3 million more than a year ago, according to a report from the Centers for Disease Control and Prevention.  The report finds one in five people were uninsured during some portion of the last 12 months."

You know, I was going to rant on and on like I tend to do, but really, I don't think I need to say anything else. Pretty sure you're all smart enough to figure this point out on your own.

Infertiles Speak Bigger Truths Than They Realize

Melanie Notkin writes about her truth as a woman who wants to be in a loving partnership before making a baby, and about how that truth is keeping her from that baby. She calls is "circumstantial infertility," a term that once applied to me. I like it a lot, that term. 

Most importantly, Melanie is writing about how life's circumstances are requiring her to re-write her personal story.

That's pretty much all our lives are -- stories we tell ourselves. Even documentable events can be spun and twisted to match our comfort level. The Infertility Chapter for most of us is one that we'd rather skip over. But here we are. And so we share it in hopes of "getting over" it. How selfish of us, no? Blathering on and on about our misery...

Here's the upside: I think it's possible, given how public conversations can be broadly influential over time, that all this infertility talk out in the open might actually benefit far more than just those who are struggling to get pregnant.

In a follow-up piece about being invisible, Melanie refers to the incredible viral nature of that first blogpost and to the many insensitive responses she received from readers. 

She hit a nerve.

I think it's possible that our discussions about parenthood and biological drives and obstacles in the mix might promote talk within the larger society about really tough ideas, concepts that are bigger in a way than just "who 'gets to' have a baby".

My own infertility struggle brought me face-to-face with myself, or at least the person I thought I was. I've seen countless others echo that experience. Many of us believed without even thinking the thoughts out loud in our heads that parenthood was It, The Pinnacle, The Reason We Are Here (both as individuals and as a species). We still find a lot of reasons to hang on to that notion.

But maybe all this talk about struggling to do something (get pregnant/have a baby) deemed by everyone from "Society" to our own tortured psyches to be the raison d'être to such an extent that we believe if we cannot clear those hurdles, we are doomed... maybe the conversation will finally take us beyond that singular drive.

I don't mean to minimize the emotions. I believe wholeheartedly in the impact of biological drives on virtually everything we think, feel, and do. But I think I'm hearing the winds of change, or maybe I should call it a breeze at this point, in online conversations as people start to think more deeply beyond the initial "OMG I can't have a baby! What do I do now?!"

Most people are not so lucky as to have life present them with opportunities to truly delve into their motivations. Infertility -- if used well -- will make you wonder why you want kids in the first place. And not just in that off-hand, silly way that haggard parents wonder ("What was I thinking?!" the mom said as the children climbed the walls.) But in a way that, for me and some others, required dredging the depths of my soul, murky and smelly, and bringing that muck and mire up to the surface to show it some light. And of course, as those of us who've done it know, once you see that stuff more clearly, it's easier to move on, whether that means keepin' on that TTC path or choosing a different truth about yourself.
I don't think the "infertiles" of the world should keep that life-changing exercise to themselves. 

For a second, just ponder what a world would be like if everyone of us clearly understood this drive to parent -- not as a species, but as individuals. And then imagine if that same world offered no societal bias about whether or not individuals became parents, so that each person could truly make that personal choice without fear of being judged or ostracized. Now, think about the children who might be created in such a world. 

It's a tough thing to do, re-writing our stories. Some of us find ourselves in circumstances that make those revisions essential to our existence here. Bringing it up out there in "the Fertile World" is our way of offering what we've learned, not about infertility, but about living life. 

Peeling the Baby-Making Onion Ring

So far, I'm still mostly unshocked. Call me an irritating devil's advocate, but my position has always been and will remain that if regulations, even just trace amounts, are nowhere to be found and there's money to be made, money will be made. Ethics and morals be damned. The most surprising thing of all to me in the whole thing is that an attorney with such a prominent reputation would risk her career and color the rest of life for herself and her family... for what? But shocked that "such a thing" has occurred? No way. 

Here's my dire prediction in black-and-white: Virtually any horrendous activity that you can imagine might happen within the reproductive medicine arena has happened (with or without everyone's knowledge) or will eventually, at least once. Life is long, folks.

You can call me cynical. I'm used to it.
But there's a point that I think is missing in some of the telling of this most recent Repro Med Gone Awry story. 

I'm reading the LA Times' account that unfolds details of the surrogates' points of view in the baby-ring scam headed by Theresa Erickson. 

[The prospective surrogate] found a couple nearby, but two attempts to get pregnant failed. That made her even more determined as she searched surrogacy want ads.

"I was responding to anything and everything," she said. "That's how desperate I was."

First, here's my bias, for those who don't already know: I'm on the kids' side. That's not to imply that every case of baby-making can be or even should be viewed as though it's a triangular and adversarial arrangement. But my professional experience with families tells me it's likely some percentage of family-building activities entailing third-party A.R.T. involves folks whose motivations are skewed toward uber-self-centeredness under the guise of self-sacrifice. 

"Well, sure," I can hear most readers thinking, "isn't that the point of living -- to meet my own needs, go after what I desire and, well, win?"

I guess. Bottom line, sure. Survival of the fittest and all that. But if there's any place in the repro med arena where The Point really should be centered around the needs of that possible kid at the end of it all, it's third-party ART. 

There was a "type" of foster parent that used to give me goosebumps: The Collectors, we called them. They never seemed to "have enough" children in their home, and often, hackles would raise when they wanted more than their sponsoring agency would allow. The line we social workers had to tread was thin and tenuous with these foster parents, because the need for more housing for more abandoned, neglected, and abused kids was always growing, never shrinking. Weighing the choice of which kid to place in which home was always huge, and The Collectors, with their -- yes, I'll say it -- pathological level of need to nurture children added yet another burden to our decisions.
 
I'll say it again. Pathological level of need to nurture children. And that's a clinically polite way of putting it. These weren't people who were scamming the system and trying to make "a quick buck" through foster care. Most, in fact, were wealthy enough to support as many kids as they could cram into their six-bedroom mansionettes. Their incentive was deep inside their psyches. And they were a good representation of the shadowy difference between love and need, although they were unclear themselves on that nuance.

When I read that this particular surrogate felt "desperate" to carry another person's baby, the word pinged around my brain. I've heard it before, the sense of desperation that (mostly) women feel about getting pregnant. But here we're talking about a woman who has all the children she wants, not a woman who desperately wants to finally be a mother.
 
What IS that desperation? Third-party advocates will tell you it's the very drive that makes a great surrogate. They "love being pregnant." So maybe it's just this woman's word choice in the article that's sticking in my throat. But I don't think so. As I've ranted about plenty in the past, word choice is a big deal, a window into our minds, often revealing what we "really" think even if we're saying what others find soothing to hear.

So here's another bold opinion in writing: Women who feel "desperate" to be a surrogate should be more carefully screened. Not just to avoid the potential "oops she changed her mind" scenario, but because it's the ethical thing to do. Third-party reproductive professionals are putting their own humanity on the scale, in addition to their reputation, if they do anything other than help prospective baby-carriers assess their own psychological base regarding parenting, tease out motivations that may belie deeper issues impacting choices and behavior, and refer some on to appropriate sources of help.
 
Admittedly, I don't wallow in the world of baby-making. I get in there, do my job, and get out to live My Life (which is currently awesome, by the way.) So perhaps I'm too out of touch to know if prospective surrogates are screened and then referred on to help if needed. Maybe this point is, in fact, being taking into consideration and to heart by the people in the business. I hope so. But I bet not so much.

Just A Little Speechless

Today's news about a prominent reproductive medicine attorney's fall from grace is booming through the grapevine. Theresa Erickson, long and widely known as fearless and vocal in her "family formation law" practice, has admitted to committing acts that are generally felt to be heinous. Folks are calling it a "baby-selling ring" -- you can read about it all over the Internet, including here at Courthouse News Service and make your judgement about how to spin what she and a few co-conspirators have done.

On a related note, I stumbled across a video today from a recent appearance on NBC Today of the Ayala sisters. 

How is this case, in which parents of Anissa purposefully conceived a baby (Marissa) who could be a bone marrow donor for her sister, related to the "baby-selling ring"?

Well, it's a loose connection, I'll give you that. But it's also an example of how society and technology interact, inevitably bending morals and ethics. The Ayala's were despised by some when they made a baby 20 years ago to save their older daughter's life. I imagine there are still plenty of folks who find their choice just plain wrong from several angles. But for many of us nowadays, it's merely an interesting and poignant twist in family-making.

Might there be a time eventually when we slip further along the continuum away from the past-perceived horrors of contraception and IVF and surrogacy? Debora Spar, author of The Baby Business: How Money, Science, and Politics Drive the Commerce of Conception, wrote how "Part of the impetus for [the resurrection of surrogacy] came from technology; part from commercial enterprise; and part from shifting moral norms." Spar describes how Noel Keane, the originator of the attorney-broker concept, launched the surrogacy market in the 1970's at the request of distressed, infertile clients who'd heard about artificial insemination. Keane was immediately dismissed as a baby-trading charlatan. Still, a handful of brokers followed him into the murky field.

Once IVF and donor egg technology made gestational surrogacy do-able, the hubbub about women carrying babies for other people quieted a little, or as Spar -- currently President of Barnard College -- puts it, "gestational surrogacy was a godsend" in commercial terms. She predicted in 2006 :

Over the next few decades, a wider trade in wombs is almost certain to emerge. If there is demand in one part of the world (and there is) and lower-priced supply in another (and there is), then the record of both trade in general and reproduction in particular suggests that commerce will proceed. The question is what role governments will play in the regulation of this trade, and how they will approach the potential for exploitation that clearly lurks in surrogacy.

Sharing News That's Not Really News

Here we go again. Me, ranting. But it's been so long, I thought I owed you one. So here you go.

I like hearing about data points that help the monkeys leave the cage. And as some of you may recall with a wince, I'm not exactly pro-medicine. Not anti-medicine, either, but I do indeed believe that we hairless monkeys have bought way too hard into The Search For Magic & Hopefully Instant Cures.

For example, I dig when something like nutrition gets a hand up in the clambering for attention we call "media". I'm into the idea that the stuff the earth provides might be all we need, if we can just figure out how to make use it well (and "well" includes sustainably).
 
So on a related note, since this blog is about fertility topics, my eye was drawn today to this headline: "Antioxidants may help treat infertility" which was followed immediately by "Antioxidants can help with infertility: Study".

Wow, I thought, two headlines in a row on Carrots Vs Infertility -- must be good!
Me being me, I scanned the first piece to find the names of the researcher and the publication in which the study could be found. Along the way I ran into this additional headline: "Antioxidants of Growing Interest to Address Infertility, Erectile Dysfunction".
 
In three headlines, antioxidants went from being possibly helpful to helpful and then to merely interesting.

And in fact, there's no real news to share. It's bonus points for the study authors of "Antioxidants to enhance fertility: Role of eNOS and potential benefits", published in Pharmacological Research. Their paper is an analysis of data that's been culled by other research, the sum of which author Tori Hagen calls "equivocal" due to study size and focus. She says that while the "jury is still out," data from previous lab studies is "very robust". Says we can look forward to "enormous" potential benefits.
I'm all for telling the monkeys where the key and the lock are located. I get that it's harder to instruct them on using those tools together to open the cage door. I'm just a disappointed monkey when headlines lead me to think that I'm going to be told more than "Yep, there's the lock and there's the key."

Btw, Toronto Sun loses with their version of the "story"... 

Follow-up note, from Jessie Gruman's PreparedPatient Forum at the Center for Advancing Health:

... health care journalists are under pressure to excise the uncertainty inherent in scientific inquiry and medical practice from their coverage.  Learning about the uncertainty is what we need but not what many of us want. 

What she said.