It ocurred to me over the weekend that the reaction to the news of the guilty pleas entered in the baby trafficking ring was very similar to the grief process articulated by Elisabeth Kübler-Ross in her book, On Death And Dying. Since the news broke, members of our community have felt the very feelings of denial, anger, bargaining, depression and acceptance that normally accompany the death of a loved one. Understandably, many remain in the denial and anger stage. But as we move forward, it is important that, as a community, we focus on where the system failed and how we can implement safeguards to prevent a repeat incident.
I have blogged previously about California Assembly Bill 1217. When we became aware of this criminal enterprise, we met with California Assembly person Felipe Fuentes who offered to sponsor a comprehensive law that would regulate the entire field of ART in a way that did not restrict reproductive freedoms. While it made it through the Assembly, it was substantially neutered to the point that I withdrew my support of the version that is currently before the Senate.
Admittedly, AB 1217 was not a perfect bill. However, it was designed to be proactive and to get in front of this scandal before it broke. It does have broad support in Sacramento and I am hopeful that many of the special interests groups that opposed the initial incarnation, will meet with a multi-disciplinary group of professionals and interested parties to amend the bill so that California will have the regulatory framework in place to protect Intended Parents, Surrogates and Egg Donors from the kind of criminal activities we have seen over the past few years.
But AB 1217 is a California solution. As an industry, we need to act at the national level to ensure that uniform safeguards are in place. In this vein, I would encourage everyone to read a blog post I stumbled upon earlier this morning at Hannah Wept, Sarah Laughed. I was only introduced to this blogger (Keiko) in the past few days and I have been moved by her passionate and candid reaction to what has transpired. Parenthetically, she has been added to our blogroll as she has some of the freshest and most passionate views anywhere in this industry and should be part of your daily reading. Today, Keiko captures many of my thoughts and emotions in her post addressing how we move forward:
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.
Erickson, Neiman and Chambers violated the trust of too many layers of this community.
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 my Facebook page 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.)
We must more closely examine our industry’s best practices and regulations while still upholding the rights of intended parents, waiting children, donors, and surrogates.
The LA Times published a very detailed article 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.
This scandal has given the public yet another opportunity to both scrutinize and vilify the infertility patient community and the honest professionals who genuinely are working to help them.
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 must repair this community as a community.
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.
I encourage you to read the entire post which can be found here.