The Gift of Life for My Family

by Corey Whelan

Several months ago in Bethesda, Maryland, a free donor egg treatment cycle was awarded to a very lucky married couple from New York.  This was the most recent event in a five year program that helps current or potential donor egg recipients to realize their dream of having what we all yearn for.  A family.  When this particular couple learned of the seminar and its inclusion of a free treatment cycle award, they traveled down to Bethesda and won.  The future mom is now happily pregnant with twins and expecting to give birth this summer.  She said, "Had it not been for the free cycle award, we would have had to delay treatment for quite a while to save the necessary funds.  With the award of the cycle we were able to get pregnant on the first try and are expecting our long hoped for children.  This free cycle was the gift of life for my family".

Sounds like what we in the word of infertility would call a happy ending.  Sounds like what we all, on our very best day, strive to give to those that we serve.  The gift of family. 

This free donor cycle was until recently, the last one in a program started five years ago by Genetics and IVF Institute (GIVF).  I'm sure that name rings a bell for many of you but most of you probably include the words London Bridge IVF,  England and egg raffle when you mention them.  And yes, GIVF's first foray into the culture of the UK, where a very different view of third party reproduction is the norm, did not go exactly as they planned. 

We in the world of infertility have been "raffling off" IVF cycles, including donor egg cycles, for many years.  We deal with eggs, and sperm, and embryos.  That's what we do.  No one ever blinked an eye until the tabloid press got a hold of the concept and bastardized it in a sensationalist way. 

No where in any press article, or blog that I have read about this story, has it been mentioned that GIVF utilized a licensed, professional counselor, specializing in the field of infertility to instate our own industry's standard of both medical, and psychological criteria, for donors and potential recipients in this program.  Both in the UK and here.  No where on Facebook did anyone that I read posting about this bother to reference our industry's history of past cycle give aways done by many, many reputable IVF clinics in the U.S. and also non profits over the years, including the one I work for.  No one seemed to care that the Genetics and IVF initiative was not based on a paid raffle and that no tickets were sold. And most importantly, no one mentioned the persons who would benefit from this initiative and why that was a good thing.  

And yes, let's please tell the truth.  This was a very smart way for the Genetics and IVF people to get potential clients in the door. 

You know what?  Last I looked, ours is not an industry that shies away from the hope of ROI or marketing ploys to get clients through the door. 

ROI aside, I think we all know that many tabloid press stories, including this one, have some very real human stories behind them.  Because of that, I think it makes sense to try to get the whole truth, not just the sound bites we enjoy devouring, before we jump to our very public opinions for all the world to see.  But that's just me.   And in this case it was just me.  Because no one else in our industry bothered to call those involved to find out the whole, real, human story.  At least not at the time of this printing. 

Hey, guess what!  I picked up my copy of the Enquirer today.  Did you know that an alien invasion is coming?  Just ask Brangelina.  Evidentally they will be steering the ship.

      

Comments

[Corey Whelan]

Hi Dr. Ramirez, thanks for your comment. Again, I really want to stress that GIVF and Bridge did not use the terminology in question. The tabloid press did. This is a lot like blaming Nadya Suleman for coining herself Octomom, when she did not. Your comments are well taken and appreciated. Also, it is meaningful that you brought your opinions here, where they can remain as blog comments. The Facebook streams are available only to those that we friend and disappear over time. This way, the conversation can remain egalitarian and long lasting. I look forward to hearing from Evelina and Marna so that we can take this conversation further, as it is clear that all of you who posted here have caring hearts and the patients best interests in mind. We at The AFA always, always put the patient first. I believe that is why our readership is so loyal. Thanks for being part of our community.

[Edward Ramirez, MD]

I have been reading all the comments since you posted "The Gift of Life for my Family" and I must apologize first of all if my DM to you was a little too crusading. I am not in favor of the terminology used by the clinics who market themselves in this manner. A "raffle" is not what I would want linked to so sensitive an issue as a donor egg cycle. The points made by Marna Gatlin & Evelina Sterling are good ones. It is incumbent upon all of us to uphold and maintain professionalism in the field of ART. Until we can get adequate insurance coverage for all IVF patients, it would be better to offer these "free" services based on financial need. As I understand it, the GIVF seminar drew quite a few people...would they have come just the same if there were no "raffle" offered? I'd like to think so, but perhaps not.

As far as financial need is concerned, unfortunately, smaller centers, such as my own, can only afford to look at each patient on a case by case basis to make this kinds of determinations. ROI, as you put it, has really always been for our center "word of mouth", excellent success rates and excellence in care are what we as physicians should all be striving for and marketing.

Thank you for continuing the dialogue. EJR, MD

[Corey Whelan]

Hi Marna and Evelina. I like the idea of exploring next steps around this issue. Maybe a good way to begin is for the three of us to schedule a conference call. Does that make sense? If so, let's coordinate via standard email - I can be reached at corey@theafa.org. Maybe we can set something up for next week.

Thanks so much to both of you for being in this on going conversation.

[Evelina W. Sterling]

Great thoughts Marna! This might be a great opportunity for the AFA to take the lead on providing some sort of standardization and overall guidance with regard to this topic (as Marna mentioned, we don't even have a good name or description for this type of thing!). Not in a strict "regulation" manner, but instead be proactive in order to maximize the benefits to patients while limiting the negative outcomes and opportunites for bad press in the future. There are so many of these infertility financial assistance or grant programs throughout the country all opperating separately and not talking with one another. By working together, we could establish "best practices" and figure out what works best (as well as what doesn't work). It would also be helpful for patients to have a central location in order to find these types of programs and understand what is involved. As part of the research I did for my last book Budgeting for Infertility, I have collected a lot of information about these types of programs and all the variability that exists. I would love to be involved with coordinating something like this if you all are interested. It's always so much better to be on the offensive and plan ahead rather than on the defensive when something goes wrong. What do you all think?

[Marna Gatlin]

Oh I totally get what you were meaning now Corey. Thank you for elaborating! I agree with you those who are not comfortable with egg donation are going to be against anything that's going to help an infertile couple have a child.

And Evelina great points to made and super questions. Much food for thought. I don't think there is an easy answer for any of this. I do think that we need to find different language for "Give Aways" "Raffles" and "Scholarships." I think we really need to make any sort of help a "Grant"

Evelina and I have had this discussion and we both feel strongly that the term "Scholarship" means a grant in aid for a student or a foundation that provides money for students. Which clearly this isn't. I think any clinic that helps another couple and refers to it as a "raffle" or a "give away" is cheapening really truly what's going on. I mean we aren't entering to win a kid or a car.

Do you get what I mean?

It shouldn't be considered a luxury to have a child (Man do I feel a blog post coming here ha ha ) and sometimes I feel like those who are infertile are looked upon like we are wanting breast augmentation, a face lift of a tummy tuck. Like it's a luxury item or wanting botox.

Ugh.

Thanks for writing a thought provoking blog.

[Corey Whelan]

Very interesting question Evelina and I love the spirit and intention behind it. Let's stay in this conversation and see what we can all create together. I do know one thing. Open dialogue takes the air out of the bubble. When we are given the opportunity to connect with each other we are able to solve most problems. Let's stay in touch.

[Evelina W. Sterling]

I completely agree Corey! I have been voicing these concerns for several years now and always felt like the minority. In order to minimize the chances of sensationalism by the media in the future, I think we all need to work together to figure out some better methods for increasing access to appropriate fertility care and helping families to overcome all the financial barriers. I'm glad to hear that GIVF (as well as many other clinics who have been involved in these types of infertility give away programs) was so thoughtful in the way they put it together. Still, we all know how one bad apple (whether it is intentional or not) can spoil the bunch when it comes to infertility. Since we all work in the healthcare field, we should all know by now that an ounce of prevention is worth a pound of cure. Now how can we all work together to prevent any more negative consequences with regard to this type of thing?

[Corey Whelan]

Evelina, thanks for your comments. I too was concerned about the candidacy requirements for the recipients; that in fact was the seminal piece of information that I needed prior to writing this piece and the element that would determine the tone of it, pro or con. So I called GIVF. My source there made it clear that the recipients as well as the donors were required to meet our own industry's standard of both medical, and psychological criteria, as I wrote, above. In was told that this particular cycle was treated like every other one, with legal and medical best practices in place. However, your queries are well taken. I too had them and went to the source to get them answered. What I don't understand is this. These types of events have been taking place for the better part of a decade in our field. IVF clinics and third party agencies have held them repeatedly and no one blinked, at least not publicly. We talk a lot about our own high standards of self regulation as an industry and the lack of need for federal oversight. And yet, this story sparked a fury of opinions once it was reported in the news. Do we really need the tabloid press to bring our own practices to the fore? Where was the outcry five years ago by those who find these events objectionable?

[Corey Whelan]

Hi Marna, this is what I meant when I referenced your comments. My original assumption about this issue was that the egg cycle give away would offend those who are uncomfortable with the concept of donor egg to begin with. Clearly, you are not uncomfortable with it and yet reacted to the news story. So your comments made me reexamine one of my original premises. One of the core issues here is that people reacted to the news story as if it was fact and yet what we were reading really was a sensationalized accounting of the facts, not the facts themselves.

[Evelina W. Sterling]

I just find the idea of minimizing the seriousness of this type of medical/surgical procedure (complete with potent medications, anesthesia, and other real risks) by doing a "give-away" or "raffle" problematic. Among other things, I'm concerned about liability issues. What if there is a negative outcome (for which is a very real chance!) Will the family hold the clinic or sponor of the "give-away" responsible? They could claim that this isn't a procedure that they would have normally tried otherwise, but felt "forced" (or at least caught up in the moment) given it was provided for free and didn't fully understand all the risks involved. Also, what is the "winning" family is found to be not a good candidate for the treatment (egg donation or IVF)? Do you reneg on the offer? And who decides this? Or do they have the right to continue anyway because they officially "won?" While I understand the overall premise that people are just trying to be helpful in giving a family the opportunity to have a baby, I think we should think very carefully about all the unintended consequences here which in my opinion are many.

[Marna Gatlin]

I don't think there is anything wrong with making a profit either. Maybe my post didn't come accross the way I meant it to.

To be clear I am always happy when someone receives help they so richly deserve.

Why do you mean when you say: "Your comments fly in the face of my predisposed premise."

Being a mother via egg donation you know my feelings about third party reproduction:)

[Corey Whelan]

Hi Marna, thanks so much for your thoughtful post. Given your stature in the community I am really grateful to hear your voice and I mean that. I’ve given this a ton of thought as well and really wrote this particular blog out of my own emotional compass. I hear what you are saying about clinics and agencies but I don’t truly agree that ROI is the only sole motive at work here. It may be true but bottom line is that I can’t intuit anyone else’s motives and truthfully, neither can you. You are making an assumption. An educated one, but an assumption nonetheless. The AFA held a lot of raffles at seminars in our early years and the motivation was absolutely steered by, but only partly by, trying to get people to stay at those long unwieldy all day seminars until the bitter end. But many of us on the staff, as well as the volunteers used to really cheer and feel such happiness when people got IVF cycles or meds that they did not need to pay out of pocket for. We were happy. And for good reason. I as a single mom never fully recouped my costs of infertility and prematurity. When I wrote this particular post I strongly felt that this egg donor cycle give away represented a litmus test for people and their feelings about third party reproduction. Your comments fly in the face of my predisposed premise. I always welcome that! ROI is very prevalent in our world, the small world we work in and the big world we live in. And there is nothing wrong with wanting your own business to succeed and to make a profit. Non profits like yours and mine don’t work that way. For which I personally am truly grateful. As I am for you!

[Marna Gatlin]

I have a lot to say about this -- First of all any time a clinic or agency has any sort of "give away" it's all about ROI. If a clinic or agency can bring more potential business their way they will spend the marketing dollars to do so. And while this helped another couple (and I am happy for this couple) this was a marketing tool pure and simple.

Secondly, my question would be "Did the egg donor know her egg would be participating in a raffle or give away." This is her genetics we are talking about. I think I would be comfortable if I knew that the egg donor was told upfront that her eggs would be part of something G&II was participating in.

I don't think I'd classify this as a raffle persey because there aren't raffle tickets to buy and it didn't cost the couple anything to enter for a giveaway.

I have been asked before by clinics what the ROI is for advertising or being associated with PVED. And I tell them kindly that there is no ROI with PVED as we are a nonprofit and we aren't about making a clinic money. We are about education and support. Advertising is one way for our organization to support ourselves. Maybe that's why we don't have lots of advertisers. Who knows.

Part of me when I read articles about infertility give aways feels a little queasy because it's almost as if these give aways are treating this like a prize from the Price is Right or Let's Make a Deal.

The other part of me is very happy that this couple had a treatment that worked for them, they are going to become parents after many years of waiting.

I wonder if this is any different having an IVF scholarship and awarding a free cycle to an individual who writes a compelling essay about for instance how a child would change their life.

Lots of stuff to think about for sure.

[Carolyn Berger]

No truer words were ever spoken, Corey. Whether its infertility treatment or adoption, we all need to take the time to, at the very least, question sensational articles. As an adoption guru once told me, "We don't read about all the planes that land safely in newspapers. It's those rare accidents that make headlines." We need to read between the headlines....

[ask doctor online]

Thanks for your story I enjoy reading it.

[Stephanie]

Thank you for this refreshing version of a story that has, in my opinion, done more tabloid (read:octomom) style damage to infertility treatment as a whole. I hope it will reach many.