How to Make a Family: The Blog

Egg-freezing: It's Not Just For Cancer Patients Any More

I had the chance to sit in on a press conference call held by the American Society for Reproductive Medicine this week, just ahead of their annual shindig (which will be in San Diego this year). The call's topic: the removal of the label “experimental” that they adhered years ago to a technique already in use.

Oocyte cryopreservation has only been 'experimental' in name. Reproductive treatment centers have been freezing women's eggs for years now. It's not as if we're talking about Frankenstein-level experimentation.

But in the name of safety and doing no harm, the ASRM approaches the recommendation of various procedures with conservative consideration. That's a good thing, especially here in the Wild West of Reproductive Medicine where just about anything goes, depending on the specialist.

In the press call, the doctors sounded about as old fogey as a doc can get. Still with the line “We can't say it's good for everyone just yet...” The opinion of the group's Practice Committee says even though the largest randomly controlled trial “comparing fresh vs. vitrified donor oocytes in 600 recipients revealed excellent clinical pregnancy rates, no different than in fresh cycles,” – the “data is reassuring” – they want more widespread clinic-specific data on safety and efficacy before universal egg banking can be recommended. 

Sigh.

Their big hangup on not offering egg-freezing to young women as a kind of fertility insurance is based, they say, on balancing (a) the inherent dangers of any kind of medical procedure, and (b) the fact that only a small percentage of young women will actually be infertile and need those frozen eggs later.

But when it comes to all things fertility, women have been taking huge risks – financially, physically, and emotionally – of all kinds for eons. Why? Because there is nothing that any woman can do that has more impact on her entire life than getting pregnant. (Now there's an opinion that I could get hammered on, but I'll stand firm.) So we (women) already do crazy things, like take daily pills that haven't truly stood the test of time and rigorous scientific investigation just to avoid pregnancy, or hitch our wagons to myriad wrong men because our ovaries are commanding us to procreate. The list of wacky pregnancy-related behavior – as women can attest – goes on and on. Trust us: We know how big a deal it is to get pregnant. 

So in my opinion (here we go again), worrying about a young woman's ability to make an informed choice about her reproductive capacity and future is, well, patriarchal and archaic.

I, too, think that the fertility industry has had a hand in steering perfectly fertile people into costly treatment. But some members of the same industry have been trying their damnedest to bring home the message that early detection equals early treatment equals greater take-home baby success. The ASRM got hit hard years ago by some women's groups when their public service program dared tell us that one of the keys to fertility was to stop putting off having babies so far into our future that our eggs were useless.

Unfortunately, except for at the church my son attends (where children are offered comprehensive sexuality and relationship classes that start in Kindergarten and are taught by parents), I have yet to see the American culture pick up the ball on the details of conception education, since most people are sadly mired in the fearful mindset that If You Teach It, They Will Do It.

There was a time when the idea of women having complete control over their reproductive ability was blasphemy. Later on, it wasn't so much heretical as it was just unbelievable. After all, what would women do if they weren't having and raising babies? (As I write this, I keep having visions of big, white men patting little pig-tailed girls on their wide-eyed heads.)

As far as I'm concerned, the unleashing of egg freezing as an option, now declared NOT experimental and actually quite successful, could very well be similar in terms of societal bend as was the birth control pill. Do I envision a Gattaca-like world in the future? No. But then could any of our ancestors imagine our world today?

There's a time for concern and worry and protecting the ignorant. Then there's a time to let go and have a little faith – in nature, in deities, in common sense, in whatever gets you through the night.

I say let 'er rip.

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.

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.

Make Your Mark: Sign Up For the IFRR

I'm not sure why it took so long for me to get around to this, but I finally signed up as a volunteer participant with the Infertility Family Research Registry (IFRR). I'd like to encourage others to do the same. But I know I might be sort of odd this way...

I'm one of those people who actually digs marketing survey phone calls (as long as they're not too long and don't come at dinner time), mostly because I did enough research as an undergrad to have pity on study authors. I've also earned a buck or two over the years in focus groups. What's not to like about getting a check for telling folks' your opinion on products and services?

I don't expect dinnertime calls from the IFRR; in fact, I'm not so sure they'll even be contacting me ever. After all, my experience as an infertility patient is a fortunately fading memory now. But that's just it -- good research often depends on good controls. Current patients might be exposed at clinic visits to queries for study participants, but how often are those of us who've been-there-done-that anywhere near that information pipeline? And frankly, once you've 'resolved' your infertility in whatever way, how inclined to help do you feel after the fact?

The IFRR was announced at last year's ASRM gathering and is fully SART-approved. I've asked around the 'in the know' circle. IFRR is not only legitimate, it's just about the only attempt of its kind. The purpose of this registry is "to maintain a list of individuals who can be contacted about participating in research studies of infertility treatment including health risks." The Registry aims to cull together patients and former patients, but also people who've never needed to darken a fertility expert's door. Naturally, they also want to bring in any form of third-party reproduction -- egg and sperm donors and gestational or surrogate carriers. The fertility gamut, in registry database form.

So I took some time -- all of 15 minutes on the library's Ubernet -- to sign up and fill out the questionnaires. Piece o' cake, and there aren't many of us who don't like being asked a few simple questions about our attempts at pregnancy and our outcomes. Quick multiple choice stuff. So now when some researcher wants to conduct a large-scale study (often the best kind), it may be simpler for them to find the number of subjects needed to render strong conclusions.

Now, I get that some folks are leery about revealing personal data online, and the first thing participants must do is sign (either on paper or online, your choice) a document typical of research studies that, among other things, spells out that you can bail at any time. If I'm contacted by a researcher using the IFRR database, I can choose to participate or not. Also, there are scattered throughout the questionnaire plenty of options to check "Would rather not say" or "I don't know". You can reveal what you want. Then be on-call for studies or not.

I'm pretty sure I missed my calling as a scientist. I'm just enough of a geek to adore research, but I'd really rather yammer about the forest than conduct tree-to-tree studies. And since I'm lucky enough to not only have resolved my own infertility but also to make a living (of sorts) from it, I think the least I can do is put a few of my story's details on a list for future use. 

Where I Imply That You May Not Have a "Right to Life" (or anything else, for that matter)

Oh, boy. Another time and post where I set about putting myself out there and quite possibly inserting my foot into my mouth. But at least I'm clear on the risks. 

Let's start here: I think harming other lifeforms is not The Thing To Do. 

And here's another facet of that whole What Do I Believe About Life gem: I think telling someone else what to do with their life is not The Thing To Do.

And how about this addendum: I believe that reasonable, flexible boundaries are a prerequisite for peace.

You can argue against and around all of the above. But I bet nobody would argue against this one: I think every human wants to feel peace.

What does any of that have to do with the infertility industry? This: In our silly national debates over health care, the apparition of rights -- right to access health care, right to insurance coverage specifics, and accordingly, the right to life -- is wafting through it all like the ever-present, silent mist that nourishes a life-filled rain forest (on a good day).

With any luck, we will all get very wet from the debate process. But who's listening?

Three pieces today -- and just three, but there are more; have been and will be -- that conjured up this morning's philosophical nature in me:

My morning ramble's starting point: The video that's making the community's rounds, Is Infertility Treatment a Right or Privilege? 

[insert Big Sigh] How unfortunate that this is a Fox-produced video. I extricated myself from the Hell of TV Watching years ago, so on the occasional glance I take to spy on What Others Are Viewing, I have to remind myself that I wasn't around for the slow, hair-growth-like transformation that TV Watchers underwent in their tolerance levels. After I shake off the unnerving feeling that I'm being yelled at by talking heads, I do my best to watch this drivel with a little bit of calm objectivity. The only good I see coming from such "debates" (how special that the "journalist" is a new RESOLVE Board member! did I hear that right?) is that maybe -- just. maybe. -- thoughts about the bigger picture will be conjured up in a wider swath of minds.

Then, in a media format a little more palatable to my out-of-sync brain, a piece by Liz Zemba on the Pittsburgh Tribune-Review's site, Debate swirls around overseas surrogacy 

It's a good introduction to what Arthur Caplan calls "a weird version of medical tourism." Weird, indeed. Another term you might use is "nauseating." 

My eyebrows first furrowed in paragraph one, where the couple who's started a surrogacy service gave up on adoption "after 22 years of marriage" -- where's the 'why'? On their business website, that's where. The Hui-Wee's cratered under the adoption option because of "too much red tape, too expensive, or too much competition." Their surrogacy journey wasn't a piece of cake, either, but at least they got a baby out of the deal.

On The Telegraph, a review by Jim Endersby of the book "Unnatural: The Heretical Idea of Making People" by Philip Ball

I've always enjoyed using phrases like "making people" (usually "making babies" when I can get away with it) because it brings down to a fine-point all the more euphemistic terms, many of which I generate right here at my laptop, in the field of reproductive medicine. 

Endersby's review is the first I've heard of "Unnatural", and it's a positive one. He does finish his coverage by stating plainly, "I found myself persuaded by Ball’s ethical and practical arguments, yet unconvinced that the benefits of making artificial people are sufficient to justify the costs."

Instead of meander on and on about what I think or how I think the dots are connected up there, I'll just rest my fingertips and let the silence do the talking.

 

Wake Me Up When Health Care Is Available. Thanks.

Back in January, I nagged about not hearing a report come out of the industry's big meeting on ART oversight and regulation.

TaDAH. Here it is: "Oversight of Assisted Reproductive Technology", issued by the ASRM last week.

After the Grand Poobahs of Infertility (my title, not theirs) met in December following a year of rather crazy and disturbing fertility news, they're now issuing a consensus.

And the winner is... the insurance industry!
Wait.
What?

Apparently, the folks who linked minds in December are in agreement that theirs is already the most regulated medical field in the United States -- read the report to see their list of watchful authorities from professional self-regulation to local jurisdictions to the Federal level.

But the group of doctors, attorneys, and patient advocates reportedly also feel that the increased provision of insurance coverage for infertility treatment -- with its inherent stipulations on who gets to use which medical treatment for what condition and when -- is a good answer (actually, the only answer posited by this meeting) to the dilemma of rogue practitioners.

Of course, I'm being partly facetious in calling the insurance industry a 'winner' regarding the issue -- everyone knows that patients who could finally access infertility treatment would be the real success stories if coverage became available to more people.

Yet it's tough, no, impossible for me to imagine this conclusion going much farther than being simply a not-so-noteworthy news item amid the greater health care turmoil in this country.

Seems to me that until health care becomes available to everyone, ART practitioners can continue to fly under the radar if they choose, at least until the next baby-making debacle.

But thanks for the report, guys.

***************
Additional resources regarding health care:

How Health Insurance Works - Howstuffworks.com

Medical Billing - Study to enter the health care work force and perform
coding and billing duties.

Fertility Experts Breathe 2009 Out. 2010? Deep Breath In and... Hold.

You know that old "when it rains, it pours" feeling? The trick to living is not so much to avoid the rough spots but to learn from them.

It was a rough year for repro med, and the experts are taking some time out today to process  accordingly.

The OctoMom Debacle. Enough said.

Then there's this recent NYT article by Stephanie Saul that highlights the ongoing scary confusion surrounding surrogacy sans boundaries.

Frankly, if I had more time to cruise the Web and find references to all of the metaphorical blazes and infernos that have erupted out of our collectively desperate clinging to notions about baby-making and our related apprehensions toward taking firm stances... well, it probably wouldn't be all that interesting anyway. At least, not to people who just want to have a baby, or maybe only in a sort of 'staring at the train wreck' way.

I'm glad to see that fertility treatment leaders are convening today to sort out "Where we are, where should we go?" at meeting in DC on "The Adequacy of Assisted Reproductive Technology Oversight".

Just to be clear, even regulations on fertility treatment, once they finally come down the pike (and they will) offer no guarantees that people will be anything other than consistently human. The UK's HFEA has been ahead of the game for years, and they still have their share of IVF Blunders.

But man, it's a good thing to see the US docs putting their heads together. No doubt today will feel a bit like a debriefing session with a jittery sigh of relief that this year is nearly gone. I'm looking forward to whatever comes out of DC's Mandarin Oriental Hotel today. I just wish Sean Tipton and his ASRM Media team were better at using Twitter.

Sticks & Stones

Today, the American Society for Reproductive Medicine reminded us that words wield power.

On the same day, I've been asked by separate entities to (a) bend the truth in writing and (b) craft readable messages for patients -- on a gratis basis.

Ah, the life of a Mighty Wordsmith.

First, the ASRM notified us mediafolk that the World Health Organization and International Committee for Monitoring Assisted Reproductive Technologies have released a new glossary of ART terminology. Included is the heavily applauded, clear definition of infertility as “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse.”

Adding 34 terms to the original glossary, the revision (published as a 'special contribution' in both Fertility & Sterility and Human Reproduction) emphasized words that define outcome measures, safety, and efficacy.

Later, the ASRM's Ethics Committee issued a report decrying the use of adoption terminology in relationship to embryos. The vast majority of fertility specialists prefer a strictly clinical stance on the subject of embryo donation.

According to Dr. Robert Brzyski, Committee Chair, "Home visits, judicial review and other adoption procedures are not necessary and not appropriate for a patient whose care entails what is most accurately characterized medically as a tissue donation."

These attempts at careful fine-tuning of our perceptions come just before a national meeting has been called to discuss "The Adequacy of ART Oversight" in December.

This feels like real progress on the parts of fertility industry leaders. Now, let's see if we can get the parallel services (like websites) to recognize the truly crucial value of words.

Sources:

Zegers-Hochschild et al, International Committee for Monitoring Assisted Reproductive Technology (ICMART) and the World Health Organization (WHO) revised glossary of ART terminology, 2009 Fertility and Sterility,  November 2009, Volume 92, Issue 5, pp. 1520-1524.

The Ethics Committee of the American Society for Reproductive Medicine, American Society for Reproductive Medicine: Defining embryo donation, Fertility and Sterility, Vol.92, No.6, December 2009.

You Can't Tweet That! Can You?

Now that my son is a mind-bending 10 years old, there are a lot of scenes like this in my house:

Little T: "Hey, Mom, [insert twisted witticism that only a child of mine could utter here]."

Big T: :::typing frantically into the nearest keyboard:::

Little T: "You're not tweeting that -- are you?!"

I won't bother delineating what follows. It's just ugly, we'll leave it at that.

And chances are good that my social media-tized lifestyle with its frequent unveiling of my progeny's out-loud thoughts to an unknown public won't have any more negative an impact on his mental health than the rest of what I've put him through in his first decade. At any rate, he can use his college fund for therapy, if he wants. I'm easy that way.

But then, I'm not tweeting and Facebook status-changing about the latest way anyone could cure their disease.

Thankfully, the FDA has been listening this month to testimony on the issues related to health care advertising in social media.

Emily P. Walker for MedPage Today writes about some of the potential scenarios that are a little scary if you spend enough time talking to health care consumers and know how they often think (or not.)

Like this: We've all become accustomed to the fine print that's rattled off at lightning speed like so much... whatever... about a drug's contraindications (risks), right?
That's the law. Pharma is required to let potential users know the downside to their wonder drugs.

No WAY can they accomplish that in 140 characters or less.

Or how about this: Your Aunt Ethel, who's been plagued by any given malady all her life, comes across a perfectly ethical, well-done YouTube video on a surefire treatment. Only thing is, Ethel, in her haste to share this incredibility on her own exciting YouTube Channel (to which you and all of your family are inexorably subscribed) inadvertently leaves off the end of the video where some kinda gory curative details happen.

Can unwitting (uninformed) patient-viewers turn around and sue the videotaped medical practitioner for not revealing the whole story of the cure, if Ethel's the one who botched the video?

According to Walker's articles (this is the second in her series) and the testimony (here with print & video on the FDA site), the response to these and similar worries by pharma and other big medical advertisers has been to shy away from social media.

But that's where we are... Stay tuned to see what the FDA has to say about what can, cannot, and most importantly, must be said to you Tweeps and FB'ers by the sellers of health care.

And I'll keep parading my son's burgeoning brain activity via keyboard. At least until he gets old enough to have his own Twitter account and starts slamming his mom by text.