How to Make a Family: The Blog

From the Mouths of Babes, To the Blogosphere

by Angie Best-Boss

An open letter to the American Fertility Association:

For the record, I have a teenager.  And God bless her, even though her heart is in the right place, there are times her youthful enthusiasm overrides good judgment.  At such time, her father or I will gently step in and provide guidance as appropriate.  We also stand back when appropriate, allowing her to accept the consequences for her behavior.  When to step in is always the million dollar question.  Usually, it boils down to this:  when her actions have the potential to cause harm to others, we step in.

AFA folks – you should have stepped in.

You were obviously thrilled to pick John Taylor, high schooler and IVF "baby", as the new youth spokesperson.  You gave him free reign over his blog and he has just posted quite a little frenzy about his infertility musings.  For the record, I hoped it would be interesting.  And it has been, just not in the way I expected.

Here's my beef:  I am sure his intentions are good, but like most teens, he may lack the life experience to adequately discern what is and isn't appropriate for internet posting in this sensitive, intimate realm of baby-making.  As such, he needs a little more guidance than he's been given. For example, he cites as inspiration an English teacher going through her own infertility struggle.  After introducing her by name in a recent post, he then wrote:

 "One person comes to mind now that I think about it.  One of my teachers who has been a big influence in my life.  It's Christmas season, but I can tell that a child is really all she wants when I see her everyday in the hallway at school - but even the jolly guy in a red suit can't bring that.  It's going to take a lot more than some Christmas wishes to make this one come true.  I honestly am at a loss of what to do in order to help, but if I could see her in the Christmas spirit, I'd be more than happy.  The closer we get to Christmas, the faster the biological clock ticks."

In other words, "quit whining, you're killing my buzz."  And I won't even acknowledge the Christmas/biological clock link.  A tiny bit of gentle editing may have been appropriate here, guys.

It took less than five minutes to find his teacher given that he provided her name, department and high school info on his blog.  I was curious as to her feelings about having her name and story featured on the AFA website.

Her response?  She had no idea her name and story were being used online.

No one asked for permission to share her infertility struggle.  Her decision to share her personal story with one of her students is an unusual decision and she might well have agreed to have Mr. Taylor broadcast it on his blog – had she been asked.

But he didn't give her the opportunity to decide.  Deciding who and what to share about your family-building journey ought not be ripped out of your hands.

John proudly boasts of having "seen it all."  In his naivete, he might not have known better.  But AFA, you should have.

Here's to a more careful 2009.

Angie

My daughter, an egg donor?

by Angie Best-Boss

I've been a parent for a while and sometimes, when I am in a doctor's office trying to make a decision about a treatment plan for one of my kids, I fall back on the same question.

"What would you do if it were your child?"

I find I sometimes get different answers than I expected, but I am always grateful for those physicians who are willing to look at the issue a little differently – from another angle.

 And it's been on my mind as I have been pondering egg donation.

Full disclosure:  I didn't qualify to be an egg donor. I was too short.

I would have done it, though, if I could.  I think.  Over a decade ago, we were a young family with a little one and it seemed like an easy way to earn extra money. (Obviously, I didn't know the first thing about how grueling a process it is...)

Now the question is moot as I have reached the age limit of even the most gracious agencies (or desperate moms). Nobody would want these eggs – even I would hesitate to use them if I were still in my baby-making days.

If my daughters ever need donor eggs, I will fall on my knees in gratitude that some incredibly courageous young woman was willing to share in such a grueling process to help someone else have a family.  I admit it.  I would gladly encourage the use of such technology for someone I love and thank God it was available.

Here's the problem.

If I'm honest, I must also admit I wouldn't want my daughter to be an egg donor.  Especially if she has not yet had her own children.

I'm biased – one of my medicated cycles (Clomid, hCG, progesterone and Avandia) resulted in a cyst that later caused the emergency removal of a tube and ovary.  I knew the risks and accepted them fully, so committed was I to getting pregnant.

This month's issue of Fertility and Sterility tells the horrifying story of a three-time egg donor who died at age 31 of colon cancer.  Her mom, a physician, tells the story and explains that there was no genetic link to cancer risks; her daughter was incredibly healthy and had none of the risk factors for cancer. The only unknown factor seems to be, in her mother's mind at least, the hormones the young woman took for her donor cycles.

Young adults do get colon cancer.  So do teenagers.  There is no causal link proven between donating eggs multiple times and cancer risks.  I know that.  But I also know there is much we do not know.  Donor eggs are valuable and important, but I also wonder if there are better ways of taking care of the young women who donate.  That said, I believe many egg donors are treated well – it's perhaps as a group that we fail them.  There isn't a financial incentive to research long-term effects on egg donors, so is that why research is lagging behind?

I don't know if it is morally right to want it both ways.  To want the technology and eggs to be available, and at the same time, hope your kid isn't ever finally strapped enough to feel like she has to donate her eggs. And yet, if her best friend needed her, or her heart's desire led to donating, then she would probably have my blessing.

I am grateful to the women who donate their eggs; but I just can't say I would have no concerns about my own daughters doing it – especially multiple times.  And if it isn't okay for my daughters, how can I say it's okay for yours?

[Editor's note: We provide a link to the abstract of Dr. Schneider's article. You may be able to access the entire F&S article by contacting her directly through her website.]

Fatal colon cancer in a young egg donor: a physician mother's call for follow-up and research on the long-term risks of ovarian stimulation
Jennifer Schneider

Fertility and sterility 1 November 2008 (volume 90 issue 5 Pages 2016.e1-2016.e5 DOI: 10.1016/j.fertnstert.2007.12.074)

 

Full-Speed-Ahead Zanyness with the AFA

by Angie Best-Boss

My dad had a wacky sense of humor.  When I was growing up, my dad, brother and I would be driving down the main thoroughfare in Deep Creek, Virginia when dad would suddenly let go of the steering wheel, allowing his pick-up to drift aimlessly from side to side.  After a few seconds that seemed like a lifetime, either my brother (7) or I (13) would give in and grab for the steering wheel, trying to right the truck before we died.
Fun days.

I admit it, not a great way to raise kids (though I’m a fine driver), but it isn’t any way to run a non-profit, either.  I keep wanting to move on and write about something else, but the American Fertility Association just makes it so darn easy. 

Have you been to their site lately?  I’m not really rubbing my hands with glee, it’s just that -- geesh – who’s running the show?  Go check it out.  I’ll wait.

Let’s see, you’re interested in infertility, so you get to the site and:

1. An announcement –
“The AFA introduces Manicures & Martinis, a bold new program for young women. M & M sessions allow young women to enjoy a manicure and the event’s signature cocktail - the Fertilitini™.” 

The Fertilitini?

Women interested in pregnancy, and you hand them a drink?  Is that really good public health education?  Wait – I forgot – you don’t have any educational people on staff.  It’s just another fundraiser – after all – sponsorship opportunities are available.

2. Listen to some random teen girl talk about safe make-up?  Huh?
What does she know about infertility that’s going to help folks on the journey?  Are you kidding me?  Oh – she’s just another plug for just another fundraiser.  Gotta pay for those drinks somehow.

3. And my personal favorite?  It’s gotta be the new teen advocate John Taylor.  What – you didn’t know that a young man’s high school project was worthy of joining forces with the AFA?  Apparently this young man is just passionate about infertility and is building a lovely collection of heartbreaking infertility woes.

Why encourage women to tell their stories to a 17-year-old boy when a site like Fertility Stories does so beautifully?  The idea of sharing such intimate details about sex, body parts, and baby-making for a boy’s high school project is insulting. Call me old school, but I still think building your family – by whatever means – ought to honored.

Does a 17-year-old have anything valuable to offer? Absolutely. As a  spokesperson for insurance coverage, which he mentions in his blog. He might be a valuable addition to the cause as an IVF child. Better yet, train him to provide peer education to teens about protecting their fertility. Oh wait – the AFA doesn’t have anybody to do training.

Who exactly is driving the bus?  Did Ken Mosesian (acting executive director) and the board decide to take their hands off the wheel and just see what happens?

I’ll sit back and enjoy the show.  Meanwhile, to folks on the journey – you might want to get out of the way.  You don’t want to be roadkill.

[Editor's Note: As of this posting, Angie is awaiting comment from Schering-Plough (the sponsor of Manicures & Martinis), the March of Dimes, and more.]

Your Tax $ At Work, For $400 Per Couple

by Angie Best-Boss

$500,000 of our tax dollars went to RESOLVE for a grant from the Office of Population Affairs in the U.S. Department of Health and Human Services? Designed to educate people about embryo donation and adoption, this is the second grant RESOLVE has received. Getting the money was quite a coup for a relatively small non-profit. So I wanted to know how the program worked and how the money got divided up.

This is a publicly funded program and non-profits ought to be transparent in how they distribute taxpayer funds. RESOLVE's response? "The money is being spent on delivery of the project as outlined by HHS. HHS has stringent guidelines for financial oversight and we file quarterly financial reports with HHS." In other words, none of your business.

So where is the money being spent? Here's what I can tell. The material is being written by a paid advisory panel, then the material is farmed out to a project management firm, a marketing firm, a communications consultant and a research firm. Sounds good, right? A little top-heavy, but legit. Until we look at the players…

The Advisory panel was chosen and compensated for their time for writing the curriculum. How much were they paid? Nobody's telling.

The project management firm is A2Z consulting, founded by Amy Zaslow. With a degree in management and fifteen years experience in software and telecommunications, Amy's qualifications must come from having served as a board member of the Bay State RESOLVE. While I have no doubt A2Z consulting are nice folks, were people with no public health experience the best choice to coordinate a half a million dollar campaign? RESOLVE turned down several people's free help and instead hired A2Z. Must be the Bay State connection. Maybe I'm too harsh - I'm sure that was a coincidence. But wait – then RESOLVE hired Terri Davidson to market the events. What are her qualifications? Davidson does infertility clinic marketing, but her best qualifications may be that she serves as a vice president for The Board of Directors of RESOLVE of the Bay State. And the communications consultant they hired? Jennifer Redmond, a former RESOLVE employee.

Then they hired Goodman Research to evaluate the efficacy of the program. I couldn't find the connection to RESOLVE, so maybe there isn't one. But neither do they have experience with reproductive health. Need someone to evaluate Sesame Street or an afterschool program? They would be perfect.

In my neck of the woods, $300,000 is a lot of money. RESOLVE should have made sure the contractors they hired were the best for this specific project. Perhaps they are, but RESOLVE didn't look anywhere else.

With large grants, non-profits typically use an RFP, or a Request for Proposal process. An RFP is an invitation for bids for a project. It allows the agency to gather more information and get the best product for its dollar. Gathering proposals from a broad spectrum of professionals means RESOLVE benefits from a wide variety of expertise. Did RESOLVE use an RFP? No. They asked a few folks they knew for proposals in marketing, but never opened it up to anyone outside of the inner circle.

It just looks bad for RESOLVE to hire friends as consultants. If a government agency was distributing funds to friends and colleagues without evaluating competitive bids, it would be illegal. RESOLVE didn't break the law, but they simply weren't careful enough with your taxpayer dollars.

I went to the source to find out more about the grant and interviewed Acting Director for the Office of Population Affairs in the U.S. Department of Health and Human Services Evelyn Kappeler. When I asked about hiring consultants, she explained, "When we give grants, subcontracts are usually competed. It is encouraged when possible to do a competitive process." It is not, however, required. If you have any questions about the grants, Ms. Kappeler welcomes your comments at evelyn.kappeler@hhs.gov.

While I disagree with the subcontracting process, it is important to note that RESOLVE was awarded the grant twice. That means, as the HHS explained, they were regranted because their performance was at least satisfactory. In other words, if they hadn't done well with the grant the first time, they wouldn't have passed the closing audit and they wouldn't have been given more money.

And yet – for their embryo adoption workshop on October 25 – the cost is $400 per couple! Per couple! So this conference is underwritten by federal tax dollars, and they make it cost-prohibitive? The board of directors should have done a better job.

For a long time, the infertility non-profits have been sacred cows. Because they did good work, it wasn't okay to question anything else they did. I want RESOLVE to have allocated its resources wisely, to have chosen the best consultants, and to have been excellent stewards of the resources with which it was entrusted. My hope is that by bringing to light even the smallest glitches, the entire field is called to the highest standards and transparency so the most people can be helped – which, in the end, is one goal we all support.

Picking Your Battles: AFA Versus Honda (...because...?)

by Angie Best-Boss

I hate to burst their bubble, but is Honda Alabama the best bad guy the AFA could find?

Seriously?

A month ago, AFA finally got a bee in their collective bonnets and decided to stand up against injustice against infertile folks. The folks they picked?

Colorado, for its scary Proposition 49 poised to render IVF virtually illegal?

Indiana, for its laws that make it a felony to pay an egg donor the amount ASRM suggests as fair, which results in women (and gay men) being on waiting lists for months?

How about one of the biggest threats to access to care – the big pharma companies? After all, Serono's profits for the most recent year reported were $390 million – that's a 75% profit margin, folks. Oops – can't do that – pharma pays your paychecks.

Wait, wait, I know… they chose a company that doesn't offer any infertility treatment at all? Nope.

They picked Honda–Alabama, dastardly bastards they are, and slammed them upside-down and sideways. Their crime? They don't cover third-party reproduction infertility. Now, they do offer domestic partner benefits and cover up to $30,000 in infertility care.

I have to hand it to the AFA. Their rhetoric is beautiful. They were "Shocked.  Disbelief.  Appalled.  Amazed.  Furious."  In fact, they asked, "Why do they feel they [Honda] own[s] the power to decide who should or should not be a parent?"

Interesting question, considering the majority of American employers don't cover any fertility treatment at all unless they are mandated by state law to do so. In fact, $30,000 worth of infertility coverage is almost unheard of. 

In Conceive Magazine's annual rating of fertility friendly companies, firms like Arnold & Porter (a law firm in DC that offers a $30,000 lifetime cap on infertility treatment) get a 3-out-of-4-star rating. Even a $10,000 lifetime coverage earned 2 stars. Subaru only offers a $10K lifetime max (except in New Jersey, where it's higher), so why hasn't AFA jumped down their throats?

And offering domestic partnership benefits? That's hardly commonplace. In fact, this month's Working Mother magazine reports that nationally, only 36% of companies do. So the Honda plant is better than 74% [edited 10-1-08 to read 64%; excuse our math] of America's companies – and they're getting slammed for being homophobic?

Why hasn't anyone else jumped on AFA's bandwagon? Maybe because they, too see the emperor isn't wearing any clothes. At the popular autoblog.com, the site describes Honda as "almost gay-friendly, more like gay-cordial." At Gay.com, the site states, "We applaud American Honda for modifying their policies to include domestic partner benefits at their sales and marketing arm in California and at their manufacturing facility in Alabama."

As unfortunate as it is – offering third-party reproductive services is prohibitively expensive for companies. It isn't as though straight folks are getting their surrogates paid for at Honda. I asked small business consultant Laura Harris to help explain. She said "I've seen quotes where the rider caused an increase of from 80% - 100% of the 'base' rate - that's up to a 100% increase in the cost of coverage for each employee [for third-party reproduction coverage]." Can't imagine why every employer in the country doesn't sign up for that plan today.

Of course, when I asked AFA if they offered third-party reproduction insurance benefits, they declined to comment. I'm sure that doesn't mean they don't offer the exact same thing they slammed Honda for. Because that would just be wrong...

Let me guess, AFA got criticized for failing to act so they picked the first story that fell in its lap? The particularly icky part: the chair of the AFA board just happens to own a surrogacy company that caters to gay men... could this be the reason behind their interest?

If you haven't read the AFA Director of Development's blog on the whole saga, you should. She has the rhetoric down perfectly – even comparing herself to Ruby Bridges as she single-handledy puts out burning crosses on her front porch: "Let me tell you something right now.  Not on my watch.  Maybe we can help you learn compassion, love and truth.  Maybe not.  But we will not let you bully those who wish to raise families and share their love."

(Wiping a tear from my eye) Maybe you really are getting harassing calls.  If so, shame on them. I guess only AFA is allowed to do the bullying. It doesn't create solutions, though.

As one infertility advocate exclaimed, "I am always happy to see a company offer domestic partner benefits and it just makes me jump up and down and shout hallelujahs when they offer infertility benefits without a mandate!"  Me, too.

As AFA states, "Perhaps Honda would benefit from reading the news and sticking to making cars instead of being judge and jury for those who want to be parents."

Perhaps AFA would benefit from advocating for the majority of infertility patients instead of being judge and jury for those companies who try pretty damn hard to do the right thing. Somebody here is losing credibility, and it ain't Honda.

Doing Good Vs Integrity

by Angie Best-Boss

I have a confession to make. It's time to come out of the closet. As a feminist, I don't automatically hate all crisis pregnancy centers (or CPC’s.) There. I've said it. Some caring, compassionate women I know work in them and are clearly upfront with all of their clients about their biases and what they are hoping the clients will choose. Women know at the beginning what party line they get in exchange for free pregnancy tests and other assistance. That's fair. You don't like it, pick another place to get information.

My beef is with folks who aren't straight up about their biases. That's why I've got a bone to pick with the American Pregnancy Association.

Sounds innocuous, right? Look online; it looks good. It's a gorgeous site - plenty of information - hell, I've even quoted it in an article I wrote. You'd never know there was anything sinister about it.

But let's start at the very beginning... The American Pregnancy Association evolved from the American Pregnancy Helpline, established by Mike and Anne Sheaffer in 1995. The couple advertised their desire to adopt a baby on two billboards in Dallas and set up a hotline to respond to the resulting calls from pregnant women. The Sheaffer’s started the crisis pregnancy center called America's Crisis Pregnancy Helpline in 1995. That CPC was later renamed America's Pregnancy Helpline. In 2003, that organization spawned the American Pregnancy Association. Both the Helpline and the APA continue to exist, ostensibly as separate entities; in reality, at one call center, at the same address.

So what? A non-profit organization with an agenda bills itself as a health education organization, without disclosing its origins and ties to a Crisis Pregnancy Center. Here's one example of why it's a problem. A handy-dandy checklist encourages pregnant moms and dads considering abortion to ask themselves a list of questions (http://www.thehelpline.org/unplanned-pregnancy/abortion/questions-to-ask-yourself/), including these:

Do I want to have children in the future?

The assumption we are expected to make, of course, is that if you do, you better not get an abortion. The Mayo Clinic's take? "Research has shown that both abortion by medication (medical abortion) and abortion by surgery (surgical abortion) very rarely result in infertility or complications in subsequent pregnancies."

Did I mention the APA is run by a doctor who may or may not have a PhD in psychology, but no medical training?

Does breast cancer run in my family?

This makes a not-so-subtle reference to the long-discredited link between abortion and breast cancer. In fact, the American Cancer Society says the scientific evidence does not support a causal association between induced abortion and breast cancer.

(http://www.cancer.org/docroot/CRI/content/CRI_2_6x_Can_Having_an_Abortion_Cause_or_Contribute_to_Breast_Cancer.asp)

Here's another reason why it isn't fair not to disclose your agenda when you are counseling women on their medical choices. On the unplanned pregnancy page, there is an article on a woman's three choices, with a suggestion to find out about the resources available by calling a "pregnancy specialist" toll-free at 1-800-672-2296. So I called.

http://www.americanpregnancy.org/unplannedpregnancy/makingadecision.html

I asked the woman who answered if she was a pregnancy specialist. She said no, but she would refer me to someone who was.

I gave her my city and she referred me to a local crisis pregnancy center. I said I was interested in finding out about abortion as one of the options in an unplanned pregnancy and I might not be able to get information I wanted from the Crisis Pregnancy Center. Could she refer me to another agency instead? Nope, she responded, but the crisis pregnancy center would be able to provide me with all the information I would need.

I wasn't the only one fooled. As Feministing.com explained,

"The scariest thing about this is that the reproductive health community at large has been in the dark about this, with many reproductive rights organizations linking to APA on their websites obviously without knowledge of its history, including the popular Medline Plus, which is a project of the National Library of Medicine."

Even the folks at Our Bodies, Ourselves got busted with a link (since removed.)

If you are opposed to abortion, say so. Explain why. Argue your case convincingly. But don't use scare tactics on people in difficult situations. It lacks integrity. You know better.

Special thanks to RH Reality Check for digging up the information.

[Editor’s note: References by APA linking abortion with future fertility are curious given the presence of some individuals on the APA’s Medical Advisory Board (notably Alan DeCherney, MD, Editor-in-Chief of Fertility & Sterility, the journal of the American Society for Reproductive Medicine, and Diane Clapp, BSN RN, Medical Information Director for Resolve.) Additionally, it’s disheartening to see that the APA’s searchable database (listed throughout related pages with the text "find an infertility specialist" http://americanpregnancy.org/members/infertility specialists) is seriously lacking in listings. Ad-based listings are unexpected by readers of websites that present themselves as client-centered organizations rather than profit-focused businesses. ~TM]

A Chicken in every pot and an egg in every freezer

By Angie Best-Boss

Well, at least, everyone’s eggs in this doc’s freezer.

Check out a portion of this press release:

Internationally Renowned Fertility Educator and Patient Advocate Partners with Sher Institutes for Reproductive Medicine

(Las Vegas, NV – June 6, 2008 )The Sher Institutes for Reproductive Medicine^® announced today that Pamela Madsen has been named as Director of Client/Practice Relations to service its 15 offices across the United States. �Additionally, Ms. Madsen will be representing ReproCure, a reproductive genetics laboratory, to help promote its mission of providing fertility preservation (egg freezing/banking) services to fertility clinics.

Words escape me. Ok. No they don’t, not really. While you’ll hear plenty of venting about my beef with most of the infertility non-profits on later days, I have to admit, this is quite a coup for Pam Madsen.

A kindergarten teacher by training, she became interested in infertility advocacy and became president of the New York City chapter of Resolve and then, plucky gal that she is, started her own infertility non-profit – now known as AFA (American Fertility Association.) She done good – raised millions of bucks, traveled extensively, and was known for being willing to spend time offering patient support. Unfortunately, there was a lot that didn’t get done.

AFA didn’t successfully get grants to do research (other than a few surveys) or even partner well with other organizations (like with March of Dimes, the way Fertile Hope is doing.)

AFA didn’t learn to lobby effectively for insurance reform or even develop well-executed policy statements the way RESOLVE tries to do.

AFA didn’t give out scholarships the way INCIID or Fertile Dreams do.

The worst part - AFA seemed to lose its focus from supporting patients toward raising money to support inflated salaries. I count 15 ads on the homepage alone. Oops, missed one –that’s 16. How can you truly advocate for consumers if big pharma pays your 6-figure paycheck?

I emailed acting Executive Director, Ken Mosesian, and asked if he would give out figures on staff salaries or corporate donations. He directed me to the recently added sponsor page that shows just over half a mil in gifts from pharma and docs. But, sure – they’re all about the patient. That’s why AFA now has an Executive Director, Director of Operations, Director of Development and a Development Associate, but no staff person for education or support.

Part of the problem was staffing – they never had folks well-trained in non-profit management running the show. And it appears to have gone off-track somewhere in the past year – they still seem to be reeling from Madsen’s abrupt departure. It doesn’t help that co-chair of the board, Stuart Miller, is making the news for a sexual harassment lawsuit, among other things.

AFA is left trying to limp along while Pam dusts herself off once again and heads to the new promised land -- this time into the office of Dr. Geoffrey Sher.

Dr. Sher is best known for his McDonalds-ization of the infertility industry and doesn’t always play well with his peers (for example, his refusal to submit data to SART, the Society for Assisted Reproductive Technology.) Most folks in the industry would agree SART data can be misinterpreted, but it can also be an important piece of information for consumers.

As Fortune Magazine reported in 2003, his Sher Institute for Reproductive Medicine (haveababy.com) was the nation's largest chain of IVF clinics. McDonald's has sold billions of burgers; credit Sher with 15,000 babies and counting. (Annual profits for the repro med chain are reported to be well over $20 million.)

His new ticket to fame and fortune (check out the link to his new $4 million condo) is egg freezing. While advantageous for women facing cancer, there is little long-term evidence that freezing your eggs now will guarantee you a baby later.

There is one guarantee though – more money in the bank for Pam Madsen and Geoffrey Sher. Oh yeah – and those pesky infertile folks? Good thing they’re still a cash cow.

Sources:

Fertility doctor buys Queensridge 3BD condo for $3.8M

Sher’s reasoning behind refusing to report to SART.

Fortune Magazine article

AFA Staff page

AFA Sponsors page

Pam back in the RESOLVE days

More on Stuart Miller’s lawsuit

Crisis in Colorado

by Angie Best-Boss

Umm…is anybody in Colorado awake?

Are you aware you are about to sign away your rights to infertility care, not to mention the pill (and I’m not even touching the a-word) to a group of right-ring nutjobs – headed up by an 18-year-old girl?

In case you’ve missed it, the group Colorado for Equal Rights submitted 131,245 signatures to place an initiative on the November ballot that would define a fertilized embryo as a person. It would define "any human being from the moment of fertilization" as a "person" for purposes of the state's constitutional provisions "relating to inalienable rights, equality of justice and due process of law."

What does that mean? It depends, but the 'moment of fertilization' is not a medical definition and is almost impossible to determine.

Planned Parenthood of the Rocky Mountains says the proposal is "far outside the mainstream of Colorado."

"By defining 'person' as any fertilized egg, the measure would call into question the legality of most hormonal birth control methods, such as birth control pills, as well as in vitro fertilization," says regional president Vicki Cowart.

See, if an embryo is a person, you can reasonably argue that since it has the right to due process, someone else can decide whether or not you will be allowed to freeze your embryos, or even create them if you are a single mom, or God-forbid, not a church-going hetero couple.

"The people of Colorado have spoken, the Secretary of State's Office has certified our signatures, and our equal rights amendment will be on November's ballot," stated Kristi Burton, initiative sponsor. "All humans should be protected by love and by law, and this amendment is a historic effort to ensure equal rights for every person."

Um…what about the infertile folks’ right to try to have a baby? Let’s hope Kristi doesn’t get endo or marry a man shooting blanks, huh?

So the infertility community is up in arms, right?

Maybe not.

I emailed the Colorado RESOLVE chapter and haven’t heard back from them yet. You can try at: info@resolvecolorado.org

What about the clinics?

I checked with the Colorado Center for Reproductive Medicine and was surprised to find no press release on their site demanding the rights of their patients. But you can find their prices online. I emailed them, too, and asked how they were getting involved, but I haven’t heard back yet.

Ditto to all of the above for Colorado Reproductive Endocrinology.

And the Rocky Mountain Center for Reproductive Medicine? No press releases, no statements. But I’m sure they’ll get back to me, too. Likewise, the Fertility Center of Colorado.

I suppose in conservative Colorado, any hint of getting involved politically might smack of being pro-choice and none of the docs want to go there. I get it, I do. But when is somebody with some money/power/influence going to step and say – “this is just not the right thing to do”?

I found a list of folks opposed to it, including American Assoc of University Women and Natl Council of Jewish Women. Even the Colorado Gynecological-Obstetrical Society says they are opposed. Of course, the OBs don’t have anything on their website about it, either – but the article on “Winning Medical Liability Cases” is comforting, nevertheless. Not one RE on the opposed list – or a single infertility group. (info@protectfamiliesprotectchoice.org.)

Maybe I’m wrong. I hope so. I hope there are doctors and advocacy groups working together to fight this bill. If you know of someone, let me know and I’ll write a $50 check tomorrow to support them and put their info on this blog. I’d love to support the infertility community but if not, Planned Parenthood can keep my check.

Until then, Colorado, I guess I’ll just keep my fingers crossed for ya – I don’t know what else to do.

Against the bill - http://www.protectfamiliesprotectchoice.org/

For the bill - http://www.coloradoforequalrights.com/

Peace,
Angie

Dumbed-down by the Docs

Have you seen the new (revised) patient fact sheets produced by the ASRM (American Society of Reproductive Medicine) - the professional group for reproductive endocrinologists?

“Stress can come from just about anything that you feel is threatening or harmful. A single event (or your worry about it) can produce stress. So can the little things that worry you all day long.

Is stress causing my infertility?

Probably not. Even though infertility is very stressful, there isn't any proof that stress causes infertility. In an occasional woman, having too much stress can change her hormone levels and therefore cause the time when she releases an egg to become delayed or not take place at all.”

~ASRM PATIENT FACT SHEET: Stress and Infertility

There’s more, but it annoys me. The fact sheet is simply 500 words on how stress might be bad… or it might not. It’s ready to be viewed online and for docs to copy and hand out to patients. This is the best they could do? Are you kidding me? These are the RE’s -- the specialists we trust with our baby-making -- and their idea of helpful patient information is material written at a 6^th grade level?

Ok, I admit it. I can be a tad bit judgmental, so to be fair, I checked with a veteran high school English teacher at Mt. Vernon High School outside of Indianapolis, Indiana. And her opinion is that the text is not written at a 6th grade level. The verdict?

I was wrong. It’s written at a 5^th grade level.

Surely an organization with as much clout and professional resources behind them hired a professional health educator to write these, right? I emailed ASRM and asked for the author’s credentials, and here is their response:

“Our Patient Fact sheets are developed and written (agreed upon)/edited, finalized and approved by the Patient Education Committee as a whole, and we do not share the individual identities or credentials of individual document drafters. Thank you again and please don't hesitate to contact me if I may be of further assistance.

Sincerely,

Jennifer Price, M.A.
Production/Public Relations Specialist”

Still not sure why you wouldn’t share the credentials of writers, unless you weren’t proud of them. I also asked if they had one staff person dedicated to developing patient education and she replied, “I am the staff liaison to the Patient Education Committee.” So the only staff person dedicated to patient education is the PR person? So whose interests are they trying to protect here?

Wait a minute…

If the professional organization of RE’s presents us with dumbed–down material, is it possible they prefer their patients to blindly accept whatever they say is true? After all, they are the doctors… and if patients start questioning protocols and treatment plans, we’d have anarchy on our hands, wouldn’t we?

So, instead they’ll just put out BS information, pat us on the head, and tell us to trust them. Don’t get me wrong – there are wonderful INDIVIDUAL fertility docs out there. I know some of them. The professional organization sets the tone for how patients are respected, educated and treated – and we deserve better.

What could they have done?

I don’t know, I’m not the specialist, but here’s an idea:

How about a review of clinical studies that show how stress impacts fertility treatment outcomes? For example:

Infertility-related stress in men and women predicts treatment outcome 1 year later.  Fertility and Sterility , Volume 83 , Issue 6 , Pages 1745 - 1752 J . Boivin , L . Schmidt

Both a major cardiovascular vulnerability to stress and working outside home are associated to a poor outcome of IVF-ET treatment.
(Facchinetti F; Matteo ML; Artini GP; Volpe A; Genazzani AR. An increased vulnerability to stress is associated with a poor outcome of in vitro fertilization-embryo transfer treatment in Fertil Steril 1997 Feb;67(2):309-14)

Or perhaps present a clinical review of articles that show how to reduce stress levels?

For example, in a study published in the January 2004 issue of the International Journal of Neurosciences, researchers assigned 36 healthy adults to have one of three types of basic massage: moderate, light, or vibratory (think drumming instead of kneading.) Although the researchers didn't look at the effects of massage on fertility, they did find that the bodywork significantly reduces stress.

Is research like this helpful for patients? What would three different RE’s say? That’s the kind of information we want to know. The definition of stress? We got that already, thanks.

By the way, they didn’t even get the contact information for RESOLVE right.

Trust us. Be a good girl and do what the doctor says, honey.

Don’t drink the kool-aid, folks.

Peace,

Angie

Welcome to Angie Best-Boss

I'd like to extend a warm welcome to Angie Best-Boss, President of My Fertility Plan. She'll be giving us her insider perspective on the Infertility Industry, filled with tidbits she's been gathering over the years, writing books along the way. You'll find her notes posted in the category named just for her. Thanks for joining us, Angie!

Her intro:

A freelance women's health writer for ten years, I am excited to be a part of the "How to Make a Family"… family.  Since I started my own journey through infertility back in 1999, I've found a ton of incredibly savvy and supportive TTCs and professionals, as well as lots of other folk who've made a handsome living off of infertile folk.

When my first book Living with PCOS (with co-author Evelina Sterling) was published, I became passionate about providing information and resources to people on the journey.  Frustration with an unfair system led Evelina and I to pair up again, this time on Funding Infertility:  Bringing Home Baby without Breaking the Bank, which will be released early 2009 by Simon and Schuster. 

Look out next year, too, for two other books I've written - The Everything Guide to Digestive Health, as well as Your One and Only, a chick-lit romance.  Before Your Time: Living with Premature Menopause has just been accepted by Simon and Schuster, and I'll announce a release date as soon as I have it. Meanwhile, catch me on the blog or at www.conceivingconcepts.com.

Peace,
Angie