Yesterday, I blogged about “Eggsploitation: The Fertility Industry Has a Dirty Little Secret” And then I did what I do – and put it on Facebook and Twitter. I have all kinds of “friends” – people that I know and don’t know which include many “insiders” in the fertility industry. And what I saw was the beginning of what has been a gradual self examination practice when it comes to the business of egg donation – and the beginnings of a discussion about how the industry educates egg donors. I would love to help encourage that discussion to continue.
The education of egg donors has been important to me for a very long time. I may have told this story before – but it is worth telling again. It also speaks to how money controls public education. In my day of running patient organizations I had to get funding for all of my educational fact sheets (because there is no federal funding of patient organizations as there exists in some countries like The Netherlands). Getting industry funding for fact sheets at patient organizations is a practice that continues today across the board at many non profits. Just check the fact sheets – you will see sponsorship listings. There is no big secret there.
So once upon a time, I wanted to do a fact sheet for potential egg donors – and I asked a big famous doctor at a big famous IVF Center to sponsor it. I got a big fat yes – and I began the process of writing it. When the doctor got a hold of the fact sheet – he screamed that he was withdrawing the funding because the fact sheet was going to encourage the egg donor to ask too many questions – and answering these questions would take precious time away from the business of running his program. Would I like to pay him for the time lost in answering egg donor questions that the fact sheet would provoke?
That fact sheet was never created because no one wanted to fund it. It was bad for business.
No matter how conflicted I feel about “Eggsploitation” (you can read their press release here) – especially their portrayal of the egg donor recipient as shown in the trailer on their website, I am glad that The Center For BioEthics and Culture Network produced it. Because while it may be extreme in it’s point of view – it is telling a point of view that needs to be told – and is not being told anywhere else. We need to make room for this perspective on egg donation – because it is real. These young women who are telling their stories are real – even if they don’t represent the majority of the egg donor experiences – it doesn’t make their experience any less valid or important. We need to hear them.
Everyone in the baby making world wants to feel like they are doing the right thing by egg donors, egg donor recipients, and most of all – the children that are created from that match. But money influences the waters. And without egg donor compensation there would be no egg donors. We all know that.
And money influencing the fertility field is not unique to the fertility field – it is a constant factor in every field – that is why big Pharma can’t buy dinner, or even give out pens anymore. We have all begun to acknowledge that fact. It doesn’t matter how big or how small the donation is – money has this awful habit of controlling things. And I have no answers – because every one needs money – and money pays the bills to keep the doors open for everyone. Even The Center for Bio Ethics and Culture Network has funders with a point of view.
But I do get disturbed with I see patient organizations with more professional/industry invested board members than patient board members. And I do get even more disturbed – when I look deeper at who is running the ships – and there is an over abundance of board members in one part of the industry that we as a fertility community depend on for our unbiased information. It is not that folks who serve in the industry or on non profit boards are evil doers – it is just that we need balance. And without that balance of professions and areas of interest – there is an influence in very quiet ways in regard to the information that the consumer receives.
Yes – it is time for us to go deeper and really look at what information is shared with the consumer – how the information is being positioned – and who in the end – the creation of the educational materials are truly serving. We must always keep in the front of our brains that consumer education is not marketing.
Posted under Advocacy, Egg Donation, Egg Donor Compensation, Facebook, Fertility, Fertility Blogs, Fertility Education, Fertility Marketing, IVF, In Vitro Fertilization, Infertility, Infertility Funding, egg donors, eggs, patient advocacy
This post was written by pmadsen on July 29, 2010
As a provider of information in published form, I’d like to take this one on, Pam. As you know, Perspectives Press, at which I have been the publisher for nearly 30 years, serves the broader niche of challenged family building and its alternatives, from treatment to third party reproduction to adoption to child-free living.
It’s fascinating to watch how differently the adoption side and the medical and medically assisted sides of this niche handle information. Bottom line is this: adoption books sell and infertility books do not. Why is this? One reason is that the adoption-related nfps, support groups and businesses review these books, so consumers hear about them. Infertility businesses, support groups and nfps rarely do this. Another is that adoption providers (especially agencies, but increasingly attorneys, too) require education of their clients, and most often building the cost of several books into the cost of services to assure that that education happens. This rarely happens on the IF treatment and third party side.
My best examples: Large numbers of adoption agencies and a few attorneys across the country buy Adopting: Sound Choices, Strong Families (and its predecessor Adoting after Infertility); Toddler Adoption; Attaching in Adoption and other PP books for their clients. There is only ONE professional practice in the egg donation field that buys copies of the only book for consumers on this topic: Having Your Baby through Egg Donation.
This while we all know that the medical and third party options are more profitable to providers than is adoption!
There have been several medical-side books published by “the big guys” that have failed, ultimately, because of this failure of pros in the field to require and support education. I recently heard from a good source that more than one of the Big 6 publishers have decided not to do an infertility book again!
Pat,
Your perspective and years of experience in infertility and adoption would be very welcome here. You go girrl. Great comments.
Pamela
For us to better promote education in all aspects of infertility (whether it be by book or otherwise), is going to take the entire field working together for a common cause—deciding which messages are important, developing the best methods by which to educate people, and making a strong commitment to value and actively support education on all fronts.
Unfortunately, I have seen the same fragmented views within the infertility field when it comes to education that Pat has noted. It seems like many people get stuck in arguing the competitive details…whose book/education is “best” or “right,” how will this benefit me or my clinic, how does this relate to more clients or more money, etc.?
Without this unified support and commitment to education by the field overall, many publishers are shying away and even outwardly refusing to participate in infertility education at all anymore. And this hurts all of us…professionals and patients alike. It is now harder than ever to get good information out to patients, particularly in book form (note how many authors have to resort to self-publishing these days). I know many great people who have fabulous book ideas for educating people about infertility that will never see the light of day because the the outward lack of commitment by the field to education.
I’ve published four very niche specific books on infertility—PCOS, egg donation, budgeting for infertility, and early menopause/POI. Since marketing and books sales is paramount to getting any book contract, my publishers always ask me each time—who will buy your book in bulk or promote it to the masses? My answer is always probably not anyone in the infertility field (which has always turned out to the be the case by the way). Whose idea was it that we can’t promote or encourage sales of each other’s books? Alternatively, I get many organizations and practitioner’s within more general women’s health to actively support my books, buy them in bulk, and refer them to potential readers so this is certainly not the case in other fields. In fact, many of the best selling pregnancy, childbirth, and children’s health books are bought in bulk by OB/GYNs and pediatricians to give to their patients or sell in their offices. By the lack of a similar reaction by the fertility field, my publisher’s response has been “Obviously, there is no interest in the topic of your book if no one is your field is willing to purchase it or promote it so why would we want it?”
I’m not sure what happened in the infertility case to bring us to this point. But I can say, that infertility books are the worst selling of all consumer health books out there. Because of these tremendously low book sales, it is now difficult (if not nearly impossible) to get books focusing on infertility published, especially niche books,; main stream media is less interested in talking about the non-sensationalized “truths” about infertility; bookstores and libraries are less likely to hold a large collection of infertility books; and most importantly patients don’t have access to the information they need. In my opinion, education is everything. And if we can’t effectively educate people about infertility, what are we really doing?
All of us are participating in some sort of education now. Why not find a way to work together to promote fertility education in a more coordinated manner that will benefit all of us affected by infertility, professionally or personally. This will only allow all of us with even more opportunities for education and to have our voices be heard by all the people who need us. It’s a vicious cycle either way. By working together, we can control which direction it moves.
It’s all about getting information to the people who need it. Unfortunately, they aren’t going to come running to us with open arms asking us to properly “educate” them. They might not know they need it, they might feel pressured to think …otherwise, they might be embarassed or in denial, or they might not know where to find us. We need to be the ones responsible for getting the messages out there to as many people as possible. And it is true that we all come at this with an agenda. In a nutshell, my agenda is “Fertility is a continuum and affects us all. Many people will experience difficulty becoming pregnant or haivng a child at some point in their lives. It can happen to anyone at anytime! The good news is that there are many wonderful resources and options available for families.” If we all don’t collectively work on figuring this all out, someone else (as we have seen with Eggploitation and Google Baby) will gladly take the stage and try to “educate” people about their take on infertility. Then we are working on defense instead of offense…which is a much harder place to be in my opinion.
Love following this discussion. About the colleges mentioned on your facebook page, Pam…I know of some who don’t allow ads for Egg Donation because they are afraid of exploitation. I think that it might be difficult to get a gig on a college campuses esp. if you are in the Egg Donation Business. Now I have been invited to high schools to talk about the ethics of surrogacy and egg donation. (in Upstate NY and Florida) Very interesting talking to 17 and 18 year olds about what is going on in the world of Third Party Family Building esp when a couple of girls in the class were pregnant themselves! Maybe on an ethical based platform where the meat of the discussion is more acceptable to the school and of course, an outline of what Egg Donation is and all that is involved would be a part of that discussion.
Oh there is just so much I want to say….
And I would love it if you would say it….