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Moving Beyond the Theresa Erickson Scandal: A Call for Community Healing

Posted Aug 14 2011 10:49pm

I’ve had a lot to think about the Theresa Erickson baby selling scandal since my post Wednesday. I realize the power of my words: I’ve had several colleagues in this field say as much to me. We are all still raw with emotion. With a few more days to process, including the variety of messages I’ve received from people close to this situation and the comments that have been pouring in on my previous post , I’ve just got a lot more to wrap my brain around.

While I’m certainly not over this by any means, here’s what we need to consider as a community moving forward.

I’ve had the good fortune of receiving my first anonymous comment on my new blog space because of my post last week. The commenter had the audacity to state that I had little credibility because I was a blogger and thus I “just type whatever they feel or believe and in most cases don’t go out and obtain the facts before posting something.” As I stated in my reply to that comment , I reiterated that no, I’m not just some Joe Schmoe on the street just spouting off an outside observer’s opinion. I know personally several individuals who have been both personally and professionally affected by this case.

When I posted on Wednesday, I came right from work, having had very little time to process everything. I very reflexively posted (like I do a lot on this blog). I realize that what I had to say struck a lot of nerves for some. From the many emails I’ve exchanged since that post, I’ve spent the last 4 days crafting this very post because I want to be sensitive to the people I know who are truly hurting over this. And I hurt for them too.

When I said that this case was a betrayal to the community, I meant it. But Theresa Erickson, Hilary Neiman, and Carla Chambers have betrayed people that I know personally. Don’t get me wrong: my anger is directed squarely at this trio of perpetrators. But I’m also angry that they’ve hurt people about whom I care and respect. We were ALL duped. And I’ll be damned if I let these women ruin the careers of good, honest, amazing people that I’ve come to know and work with, people who are doing incredible work for this community.

We all just need some time and space to process this emotionally and I am here for those affected as both a colleague and friend. We, as a community, need to be there for these professionals – to remind them of and thank them for the work they have done, and to encourage them, if they’re willing, to dust off their shoulders and get back to that good work.

It’s astounding to think of the number of people Erickson, Neiman, and Chambers worked with on a daily basis who had absolutely ZERO clue that anything was amiss with any of them, particularly Erickson, as she was indeed such a prominent figure in the field. I don’t think it’s unfair to say that the ART industry as a whole was basically hoodwinked.

I had posted on asking for people’s reactions and thoughts about this whole case and received a particularly insightful and at once troubling comment from Pat Irwin Johnson, a publisher for Perspectives Press:

“…as a former board member of several related NFPs: at least one of these perpetrators had every right credential and was an active member of ALL of the appropriate related professional groups and so was selected to be on the boards of directors of at least two highly visible consumer groups… If she had passed all of these “tests” and still spent over half a decade working illegally (according to the plea agreement…) how do we as consumer advocates choose our board members wisely?”

Pat raises a valid point. If Erickson had passed all the “tests” and yet was still able to run a criminal operation for that long, how are we supposed to trust the industry? From a patient perspective, we are already up to our eyeballs in research when it comes to selecting the right clinic, the right doctor, the right protocol. And even if we selected THE best – as these dozen families thought when they chose to work with Erickson – there’s still no guarantee that what they’re doing might even be kosher. We assume this, because we trust that the leaders in our field are competent, honest, ethical professionals… but we have no guarantee.

Erickson’s case is a stark reminder of a thought we don’t often want to entertain, the take-home message being: “Buyer beware.” (As we don’t have enough to think about when making decisions about building our families.)

The LA Times published yesterday that focused on the experience of three of the surrogates involved. From this article, I’ve learned that these women weren’t even paid. It was when Chambers admitted to one of the surrogates she was still trying to find parents when they were 12 weeks along and still hadn’t yet received payment that the surrogates suspected something was amiss.

There are recommended guidelines set forth by leading professional associations, such as the ASRM, that establish best practices for the good of the industry, particularly with regard to patient safety (e.g., guidelines on the recommended maximum number of transferred embryos ). And there are guidelines for best practices surrounding egg donor compensation . And even these recommendations are under fire, as a class-action antitrust lawsuit currently alleges both the ASRM and SART for price-fixing collusion by recommending a limit on donor compensation to $10,000.

In the end, extensive regulation and best practices guidelines were established and set in place and yet Erickson and her cohort managed to outwit the system by just straight up lying to everyone involved. Surrogates were promised their babies had parents. Parents were promised their babies’ origins were legitimate. Family courts were given what they believed were true documents cementing lawfully-begotten surrogacy arrangements.

While I certainly don’t have all the answers, the Theresa Erickson case raises the point that we must take a good hard look at what’s being done with regard to best practices in third-party reproduction. I feel like there are still areas of ART and third-party family building that feel a bit like the Wild West, as clearly the Erickson case illustrates. And it’s not the public that should be necessarily driving this conversation; rather professionals and patients should work together to help set the community standard.

Whether it’s Jon and Kate, or Nadya Suleman, or even Carolyn and Sean Savage, the infertility and third-party reproductive communities cannot catch a break when it comes to the media. It’s stories like the Theresa Erickson baby selling ring that literally has its own ready-made Lifetime movie title waiting to happen (full props to Chickenpig for the Lifetime reference). It’s strange how a patient community of 7.3 million strong is the only disease community that’s told our treatment for our disease is a “lifestyle choice” and unnecessarily elective.

The truth is that the decision to parent is a choice; to be afflicted with a disease is not. Thanks to Theresa & Co., babies are once again a commodity to be bought by the highest, most desperate bidder. In reality, it’s not about desperation or money: it’s about making the most informed choice that benefits each individual couple the most; what is possible for one couple may not be for another and so on. As patients, we have to fight misconceptions every day about what it means to live with infertility, and the Erickson scandal has only added to the number and weight of those misconceptions and myths.

She’s made it even harder to be infertile.

We – both the industry professionals and the everyday ALI bloggers alike- have a lot of work to do in order to clean up the damage that’s been done and I invite anyone in this community to stand with me to achieve this. There’s definitely some finger pointing as I’ve been reading comment threads and blog posts on other sites. Mostly, there’s just been a lot of understandable shock and rightfully deserved anger. But we can’t turn this anger toward each other, as much as my Anonymous commenter would have us do in his antagonizing comment.

I have lived my life post-diagnosis with nothing but hope. I’ve given myself the time and space to grieve and continue to do so. But ultimately, I’m focused on my goal to parent – someday, somehow.

I certainly apply this to everything I do for the infertility community. I have hope that one day, infertility will no longer be regarded as a taboo, silenced disease. I have hope that one day, infertility treatments will be covered by insurance. I have hope that one day, family is not defined solely by a mom, dad, and 2.5 children. And I have hope that one day, I will be a part of this change.

The Theresa Erickson case is a huge setback for the community of both patients and professionals, there’s no doubt about that. But we can also use this as an opportunity to show the humanity and the reality of infertility to the public, that we are not just baby-hungry desperate couples and that our practitioners are not just money-hungry vultures preying on the innocent.

We have a unique opportunity to speak loudly as a unified community and tell the world what it’s really like to live with infertility and what it’s like to treat and serve those living with it.

Now is the time to focus on and celebrate the work of individuals and groups who are forging pathways into innovation and leading through compassionate care. From the nurse who returned your phone call within the hour to the online forum community manager who shared their online resources with you – there are plenty of people without the big-name recognition of industry giants who are doing incredible work that often goes unrecognized.

I may not have the exact plan on how to go about repairing this community, but I want to put it out there that I’m here for anyone who wants to join me in figuring that out. I want to go on record and say that I’m here for anyone who wants to heal this wound through positive action for the good of the whole.

Because we have a lot of good, valuable work still yet to do.

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