Prospective Families Blog

Let’s Talk About Genetic Half-Sibs

Amy — Wed, 28 Jul 2010 12:39:34 +0000

Let’s talk about egg donor conceived children and the very real expectation that a child whose parents relied on an egg donor for family building is likely to have a significant number of genetically related half-siblings. Let’s talk about what we can be doing, as professionals, to learn from sperm-donor conceived children. How can we better our policies and practices with respect to these egg donor conceived genetic half-sibs so that as these children reach majority age, we have better answers when they come asking about their donor and more information to offer about their genetic tree? What can we learn from practices of the past to do better work on behalf of this new population?

Recently, there has been some buzz about “shared donor egg cycles”, a practice, after much consideration and thought, I have decided may meet an immediate need of lowering donor egg costs for recipients (a very real need) but does not, it seems, give consideration to how many genetically related children will result from each (shared) donation. Even though ASRM suggests that donors limit themselves to 6 cycles and even if we, as professionals, are committed to so limiting donor activity, most programs view a shared cycle (with sometimes more than 2 recipients per donation) as a single cycle. A donor, compliant with the ASRM 6 cycle limitation, may have, before retiring, donated to 10, 12 and at some practices, significantly more recipients. Whether we decide that this is acceptable or not, whether or not we feel that making egg donation accessible to a more financially limited patient pool is a compelling argument for shared cycles, we have to talk about half-sibs.

We have to talk about the fact that despite several tremendous efforts to track donor activity (tipping my hat to Wendy Kramer and the Donor Sibling Registry) we really do not know, especially with donors who both clinic and agency hop, how many children result from the totality of a single donor’s donation activity (shared cycles or not). How can that be okay? We know that because these donors are young, they are likely, most of them, to go on to have their own children. We know that with the success of egg donation and with an emphasis on single-embryo transfer, that even recipients of shared donations may continue to build their family beyond the child(ren) conceived during the fresh donation cycle and we have to acknowledge that all of this results in a lot of genetic half-sibs.

If we further the discussion and address the practice (at both clinics and agencies) that many anonymous egg donors are not informed of a cycle outcome, we perhaps see a alternative family building option with intentionally (?) placed disconnects between children who, as a result of ART, are otherwise genetically related. We know, we hear it from the sperm-donor conceived community, that these disconnects cause harm and I think that we have to do better. We will, someday soon, have to answer to adult-aged egg donor conceived children and I expect that they will expect better answers than what we have, to date, been able to provide to sperm-donor conceived children.

(I was recently informed by a colleague that “most donors” do not want to know whether or not a child was born following her donation. Really? I’d love to see data compiled from surveying “most donors”. Since we do not have a central registry of donors, I am not sure how this colleague accessed and then surveyed “most donors” and would suggest that what we have, at best, are anecdotes that are being relied upon by clinicians, agency owners and others in a self-serving manner.)

At Prospective Families and through my law office, I hope to counsel donors to be thoughtful, informed and forward thinking about their donation activity and although I discourage shared-cycles and while we do our best to track donor activity and number of the live births attributed to each donation, I still fear that even at our small, very conservative practice, we just may not be able to provide satisfactory answers to the children we all helped come to be. At least my staff and I acknowledge that we have to do better.

Pondering About What We, As Women, Don’t Know

Amy — Mon, 26 Jul 2010 12:26:15 +0000

As professionals involved in the field of fertility, we often hear our clients say, “I just didn’t know”. They didn’t know about the age at which fertility begins to decline, they didn’t know how expensive advanced fertility treatments can cost, they didn’t know how difficult it can be to adopt, they just didn’t know how significant the road blocks might be to family building.

With respect to fertility preservation, based on data presented recently, younger women tells us that they didn’t know that sexually transmitted diseases can lead to fertility struggles, that riskier lifestyles as young women can lead to challenges with respect to later family building efforts.

But what else about our reproductive selves do we not know? Recently, my oldest girlfriend (we have been friends for more than 30 years, the sort of friendship that blurred the lines and crossed over to “family’ decades ago) was diagnosed with advanced stage fallopian tube cancer. I cannot tell you how many “didn’t knows” have come up since the diagnosis. The most shocking of all, dear friends, was that she was completely asymptomatic until a minor fender-bender coincidentally led to a scan which then led to the diagnosis of a metastasized and pervasive cancer. My friend “didn’t know” that her reproductive organs had developed a malignancy….she just didn’t know.

It was suggested, by her oncologist, that because my friend is of Ashkenazi Jewish descent that there may be a genetic link to her cancer, it was also suggested that because my friend delayed child-bearing, that she was, therefore, at higher risk. Guess what, despite regular gynecological visits and standard screens, my friend did not know that genetically or with respect to lifestyle choices she was more likely to develop this rare cancer, some have suggested to me that likely, ever her gynecologist didn’t know.

Given the connection to the nature of my friend’s cancer and the work that I do, I immediately began to reach out to colleagues. Powerful, well-informed and high-profile folks have responded with exclamations of not knowing, as well. “I’ve never even heard of fallopian tube cancer” said one very well-know known IF professional and another said, “my only guess is that it is related to ovarian cancer”. It is true, even within the gynecological oncology community that little is known about fallopian tube cancer. Because it is so rare, little funding is made available for research, minimal, if any, efforts are being undertaken for awareness.

I am pondering, this morning, this big picture question about how much we, as women, just do not know about our reproductive risks and wondering what that means for our girlfriends, our sisters, our daughters, ourselves. “I just didn’t know” cannot be acceptable, particularly with matters like fertility and gynecological cancers because not knowing until it is too late is just, well, it seems, too late.

I Need a Donor, Now! or How Cancer can Change a Donor Search

Amy — Tue, 13 Jul 2010 11:50:05 +0000

In the summer of 2008, a young woman called needing assistance in finding her ideal egg donor. The woman was in her mid-thirties, her husband not much older. The diagnosis was Premature Ovarian Failure. The woman had very specific and quite detailed criteria, she would settle for nothing less than a donor who offered all of the characteristics she deemed as “must-haves”; the list was long. Tried as my team and I did, we could not satisfy this client and so, she moved on. She moved on to two other agencies, she matched three times, financially, emotionally and with respect to time investing in donors that for various reasons, did not work out. In the summer of 2009 she came back to Prospective Families…she needed our help.

To say that it is rare that a client with very stringent and non-negotiable donor characteristics comes back to Prospective Families following (what I believe to be) an unnecessarily elongated donor search, or a failed cycle, or a go-round or two with non-qualified donors who never should have been accepted by an agency in the first-place (but they looked good on paper) would not offer the staff at Prospective Families the kudos they deserve with respect to our matching services. Today, as we now do every Tuesday and Thursday, we will meet to discuss challenging matches. We like challenges, we do well with challenges, but most importantly, we like and do well with making families.

I have chosen to write this morning about the client who spent a year of her time and energy searching for what she perceived to be perfect donor candidates only to then have the universe jolt her into a re-prioritization that led, eventually and in quite a miraculous way, to her and her husband becoming parents. When Kate (not her real name) returned to Prospective Families in July of 2009, she emphatically shared: I NEED A DONOR NOW! She told us she needed to cycle, immediately, with Prospective Families’ ‘best donor’, the donor with whom she was most likely to get pregnant. Her 37 year-old husband had been diagnosed with cancer, the prognosis was not good, she wanted to have his baby, she needed our help.

I wish I could tell you that matching proceeded smoothly, that we made a recommendation for a donor with proven cycle success and that Kate jumped to match, but she didn’t. It was hard for Kate to let go of her “wish-list”, she is, herself, an attractive, academically and professionally accomplished woman and felt that she could best embrace collaborative reproduction if she identified, in tangible ways, to her donor. We were both inspired and somewhat frustrated, we knew we could help her, we just had to be patient while Kate found the courage to detour from what she perceived to be the only path she could comfortably navigate with respect to donor egg…and we were worried, we knew that time was of the essence.

Thankfully, and this is the case with most of the successes we celebrate, Kate had the support of licensed mental health providers. Kate and her husband worked with therapists who specialized in fertility and, given their special circumstances, they also worked with oncology specific therapists. We gently but firmly pushed, we waited for feedback, we remained uncertain about whether or not Kate would ever become a paid client at Prospective Families, we just weren’t sure about how this would all turn-out. We kindly asked the donor we felt strongly would give Kate her best shot to be patient, as well.

It is the summer of 2010, Kate has had her baby! She sent a birth announcement, a warm thank-you and baby photos to our office. She shared that her husband was given a promising but still experimental treatment and that he had become qualified for that treatment just one week before the birth of their child….”their child” so said Kate, without question.

Kate had eventually come to match with a donor who is now retired. A mom herself, donor JT had completed 6 cycles, all but one of them successful. She was endorsed, following every cycle she had completed, by the physicians, nurses and mental health professionals as most appropriate for a next match. We and the clinical teams found her to be beyond compliant and so very impressive with the thoughtful, mindful approach to egg donation. She was a sweetheart to work with, she is a lovely woman and not only are we thrilled that Kate came around to see how much hope a cycle with JT could offer but we know, too, that JT is just thrilled to have helped this family come to be.

Prospective Families, an Independent Egg Donation Agency Supporting Patients at a Dozen + Clinics across the North East

Amy — Mon, 05 Jul 2010 12:39:00 +0000

In a piece I recently wrote for Fertility Ties, an on-line community of reproductive professionals who provide expert advice on all things ART, I addressed with the reader (most likely IVF patients considering collaborative reproduction for family building) information about “agencies” and the role such an entity can play in a prospective parents family formation strategy. This piece will run later this week and I am hopeful that it will allow for consumers the opportunity to make an informed decision on whether or not to work with an agency and more importantly on how to select the right agency.

Prospective Families, an agency I started almost four years ago is, I would hope, the “right agency” for many of the recipient parents who come to our site, register for and peruse the PF donor database, engage my staff in counsel on donor selection and ultimately choose to incorporate the Prospective Families team into a next effort for achieving a healthy pregnancy.

As mentioned in the Fertility Ties article, agency selection is a critical matter and patients might want to rely on their clinical team for guidance and input. But how do clinics come to know an agency and why should that relationship matter?

I am delighted to share that Prospective Families works, independently, with approximately a dozen fertility centers in the North East and several in other regions of the country. Our relationships with the donor egg programs at these clinics, while completely independent and not otherwise formally connected in any business context, is a relationship based on those clinics deeming our practices, policies, ethical standards and the quality of donor candidates to be consistent with what the clinic intends for their patients. These relationships have been cultivated over many years, some began even before I launched Prospective Families and, because the relationships allow for honest and regular exchange about best practices, it is a relationship that can yield for the patient agency engagement that minimizes consumer risks.

We work with small programs, large institutional programs and programs with in-house donor pools who want to offer their patients an option for donor selection after the in-house candidates have been deemed, either by the program or the patient, as insufficient. NYU, Cornell, East Coast Fertility on Long Island, The Bay State Medical Center in Western Massachusetts are all programs which primarily “match” their patients in-house but look to Prospective Families when a patient needs a donor with unique characteristics not otherwise available through the clinical program. It is my pleasure to support these otherwise “full-service” programs and am grateful that these institutional practices have confidence in what Prospective Families can offer their patients should the need arise.

Prospective Families is pleased and delighted to also work with Massachusetts General Hospital, The Brigham and Women’s Hospital, Women and Infant’s Hospital and several other larger programs while remaining as committed to and active with the donor egg programs at smaller centers like Boston IVF, RMA NY, IVF NJ, Cardone Reproductive Medical, Batzofin Fertility, Reproductive Science Center as well as Columbia Fertility Centers in the D.C. area. We are on the “preferred agency” list at these centers because of the relationships we have built not only with the physicians who oversee the donor egg programs but also the nurses, coordinators and mental health providers who round-out the clinical donor egg team.

Because we are independent agency, with no formal or contractual relationship with any one clinical program, our client base is diverse, our donor pool is equally as diverse, my staff sees to it that we are current on the varied protocols at each of the centers we work with, and Prospective Families, it seems, therefore, is generally regarded as the right fit for patients cycling at what are the nation’s top third-party family building programs. We return the confidence that clinics have in Prospective Families with focus and commitment to any patient coming from any of these wonderful centers. (And we love it when programs feel so strongly about Prospective Families that they not only send to us their patients but sometimes they refer prospective donor candidates….it is so nice to be so well thought of!)

I was not donor conceived!

Amy — Fri, 21 May 2010 10:59:29 +0000

It occurred to me this morning when posting a reply to the American Fertility Associations latest blog on disclosing to one’s child his or her conception story and after having posted a reply to Andy Vorzimer’s blog on inappropriate speculation about Kelly Preston’s newly announced pregnancy that I had a thing or two about my own story to share. I was not donor conceived, of course I wasn’t, I was born in 1965. I was born, however, to a 43 year-old mother and 2 years later, my brother followed; he was not donor conceived, either. I had the oldest mother in kindergarten (although I certainly didn’t know that), she was the oldest brownie leader and later, the only mother with gray hair diving the waves and body-surfing along with me and my teen-age friends. To my knowledge, no-one asked or even quietly gossiped about how it was that my mother came to conceive in her mid-forties. As the stories were told to me, everyone simply shared in my parent’s joy. Disclosure? Folks didn’t talk much about matters such as infertility back in the day when my parents were hoping to build a family. Married in the 1940s, matters of their bedroom were not for public discussion. But news of my birth? I’m told that the word spread quickly through Little Italy (my entire family, both my mother and father’s side all lived within a few blocks of each other). Folks came from all over to my grandmother’s flat to share their good wishes and to celebrate. As a young child, whenever hearing this story (and I heard it quite often) I conjured up images of my aunts and uncles, cousins and neighbors, paisanos (as they say in Italian) all gathered around my grandmother, popping champagne and throwing confetti…I was young, I had an indulgent imagination. But as I got older, I came to understand that my parent’s respective ages and the amount of years they had waited for my brother and I were simply part of the prologue to their story, details needed to lay the foundation for what they truly wanted to convey to me as their sheer joy and their sense of having been blessed. They did not hide their infertility (although that word was never used), I knew my mother had suffered many miscarriages and much emotional pain but the arc of the story, if you will, was that a healthy baby was born and was welcomed into a home, an extended family, a community with a sense that something miraculous had happened….no one, to my knowledge, wondered (at least, out loud) how.

Prospective Families talks Donor Compensation

Amy — Wed, 12 May 2010 15:53:43 +0000

Last night, World News Tonight with Diane Sawyer aired a story about egg donation compensation; unfortunately, the story was the same we see perpetuated by so much of the media, the ever-present story about the high demand for and big bucks offered to donors of certain physicality and/or academic status. One ABC News staffer, posing as a donor candidate, was told, when calling a local agency and telling them of her physicality, “Blondes move fast” and another was told that because she was a Wellesley College student she could likely be compensated $25,000.00 per donation. Same old story, same distorted message to the public.

Recently, I spent time (a good deal of it) with an ABC producer for a story about egg donation. The producer interviewing me was very clear that her position, with respect to donor compensation, was one of free-hand of the market, but that World News Tonight was interested in doing a different sort of story about collaborative reproduction. We talked about the evolution and commodification of the egg donation industry (”industry”…I hate using that reference), we talked about self-regulation amongst professionals, we talked about government intervention (I shared my perspective that I do think we can effectively self-regulate but that we have some distance to go before we get there), we talked about compassionate donation, truly altruistic donors and we talked about the fact that there are no barriers to entry, that anyone can hang a virtual shingle as an egg donation agency and about how vulnerable the consumer is because of the, at best, soft standards of practices some clinicians/physicians require of the agencies from whom they will accept donors. We talked from my hotel room in New Orleans where I was, coincidentally, attending an American Bar Association’s Assisted Reproduction Technology Law meeting intended to address complex third-party reproduction matters. ABC News and I talked about real issues.

For those who have not struggled with infertility, I understand the intrigue and the outrage to the constant media portrayal of “the donor egg biz”. I understand the strong reaction to what seemingly has developed as a commodities market for genes and I suggest, as a long-term professional in this field that there are so many of us who practice reasonably, responsibly, with ethical standards and within the prescribed guidelines, so many of us who do not suggest that “blonde (donors) move fast” but rather come to work, every day, to assist in making families, beautiful, healthy and much yearned for families. It is sad and unfortunate that the media finds the model/donor turned agency owner who donates for up to $100,000.00 a fair representative of the practices in our field. For those not in infertility treatment or otherwise closely connected to reputable practitioners, the general public, as fed by the media, is easily led towards the “eggs for sale to the highest bidder” perspective…and that is so unfortunate.

So, today, as every day, I roll up my sleeves, not only to do good work with the clients we are servicing and the donors registered with the Prospective Families but to stay connected to colleagues as we continue to push for standardized agency practices and to create a more appropriate experience for both consumers and donor candidates and, in doing so, I’ll remind the media, I remain available for comment.

More on Egg Donors and Compensation…

Amy — Mon, 19 Apr 2010 16:32:57 +0000

The post below was a comment that I added to a blog post from colleague Pamela Madsen, The Fertility Advocate, entitled The Egg Donation Dilemma – Compensation Vs. Enticement. Her original post can be found on her website, www.thefertilityadvocate.com

Amy Demma 4.19.10: Thanks for writing on such an important topic, Pam. To clarify, according to ASRM Guidelines and consistent with the practices at so many donor egg programs, donors are compensated between $5,000 (where ASRM sets the standard for “appropriate” compensation) and $10,000. Recently we polled the donors registered with Prospective Families (donors set their own compensation at my agency) and were pleased to learn that 70% of the approximately 130 donors registered with our agency are asking comps below $7500.00 (no donor who cycles through PF is comped more than $10.000.00). Also, there seems to be some connection to regional practices around donor comps, as well. Many in-house donor programs in New York City set a flat-comp for all donors at $8,000.00. An in-house program in the south, run by a colleague, comps all their donors at $3500.00.

As I consistently say to clients, colleagues and the media, yes, the extreme compensations are out there (no one denies the findings by Mr. Levine as published by the Hasting Center about the $30,000 Ivy League donors) but there are good clinical practices who pay close attention to donor compensation, clinics where adherence to the ASRM guidelines is the threshold for whether or not a donor candidate will even get through the front door.

This issue of commodification of certain donor characteristics (intellect or rather where she is currently matriculating, physicality, talents e.g.) is a matter about which, I suspect, debate and discussion will continue for as long as we have egg donors, but, today’s Fertility Advocate blog addresses a more fundamental issue, whether compensation should be offered, at all.

Those of us who are genuinely in this business because we feel a tremendous sense of empathy for those who cannot conceive, have to look at this issue realistically. We know from the U.K. and other countries wherein donor compensation is illegal that there is a tremendous void of donor candidates…apparently, altruism is not enough of a motivator to donate. We know that some level of monetary compensation is necessary and we know (we trust) that there are enough safe-guards in place to “screen-out” the donor only interested in the check at the end of the cycle.

Today’s blog also mentions concern that donors (and we all do have to acknowledge that these are very young women) may have a short-term perspective when deciding to donate, that they may be responding to an immediate financial need without regard for the long term ramifications of donating, particularly donating multiple times. At Prospective Families, we want every donor to think about the fact that, given the success rates of egg donations, given that a cycle is, statistically, likely to result in a pregnancy (and if there are high-grade frozen embryos, there is a chance that a next sibling can result from just that one fresh-donation) and given that many of these young women have yet to have their own children…we have an equation likely to yield many genetic half-sibs.

So, your call to action, as always, Pam, is spot-on. Collaborative reproduction is a beautiful (and to a great degree) altruistic partnership that allows for much yearned for babies to be born. I am sitting in my office, looking at my wall of baby photos and thank-you notes from clients, I am thinking about the follow-up e-mails donors who have worked with my staff send, post-cycle, I know we are all doing good work. And for those of us who are “vigilant…in managing the lines between fair compensation and enticement”, my hope is that donors, recipient parents and referring physicians will see clear to agencies committed to best practices, we are out there!

RESOLVE announces both a Short-Film Competition and a local book event: Love and Infertility. You are invited to participate in both!

Amy — Sat, 27 Jun 2009 17:44:59 +0000

Sometimes, with all of the focus and commitment and determination that is required of family building efforts, we lose the perspective that our journey is worth sharing and that the experiences of others struggling with infertility just may have something to offer the next Intended Parent…..and sometimes, we just need to have a little fun with this all. Below are two events that I am recommending for your consideration. The first is a film-competition, the second a women’s only book event. I share these events to remind you that you are partnered in your struggle to become a parent…partnered with a broader community and certainly, always partnered with my team.
“CALLING ALL ASPIRING FILMMAKERS”
Share Your Story about Infertility and Inspire Others!
Fertility LifeLines™ and RESOLVE: The National Infertility Association Present The In The Know Short Film Competition
The In The Know Short Film Competition encourages those 7.3 million Americans affected by infertility to share their stories and provide hope and encouragement to others.
Those who have been touched by infertility can participate in the competition by submitting a creative, inspirational short film about their path to parenthood (or the journey of someone close to them). The film must be under 10 minutes in length. The deadline to submit entries is August 1, 2009. Submitted films will be reviewed by a panel of judges, and competition finalists will have their films screened at a festival in New York City this fall where a winner and runners-up will be chosen and awarded prizes. The winner will receive $1,000 and two runners-up will each be given $500. Visit www.resolve.org or www.FertilityLifeLinesfilms.com for important details about the film festival and to view clips from the finalists.”

“Join Village Fertility Pharmacy for a Ladies’ Night Out with RESOLVE’s Hope Award winner and author Kristen Magnacca!”

Women who attend will: · Have an opportunity to mingle with other women who have experienced infertility or who would like to learn more about infertility
· Meet Kristen Magnacca, author of Girlfriend to Girlfriend: A Fertility Companion and the award-winning book Love and Infertility: Strategies for Survival - Balancing Infertility, Marriage, and Life, and learn more about her battle with infertility
· Hear Kristen Magnacca give a brief talk about her “Honey Do List” strategy for keeping a marriage strong in the face of infertility

This event is open to all women and refreshments will be served.

Tuesday, June 30, 2009 5:30pm - 7:30pmVillage Fertility Pharmacy335 Bear Hill Road Waltham, MA 7818104151mnair@villagepharmacy.com for more information” Have a wonderful weekend!

$35,000. Donors Do Not Buy Family Building Success

Amy — Sun, 25 Jan 2009 06:19:11 +0000

In the January 25th edition of The Boston Herald, a side-bar to two articles for which I was interviewed discusses a West Coast couple advertising at MIT for a donor and offering her a compensation of $35,000.00. I am not sure where to begin my commentary on this couple’s determination to recruit a “genius Asian egg donor” with a lure $25,000.00 above industry standards for best practices as established by the Ethics Committee of the American Society of Reproductive Medicine. Yet my staff, my colleagues and even the donors who work with Prospective Families are well-aware of such practices.

From time-to-time, I receive calls from prospective parents intending to offer exorbitant compensation for what they view as “superior donors”…I decline every one of these requests for services but not before mentioning that where a donor matriculates (e.g.) or what her grade point average is not an indication of her fertility and that an MIT student is no more likely to bring any couple to family building success than a donor with less “pedigree”. In the article the would-be recipient parents claim to be setting the bar high….but I am not sure what bar they are referring to as nothing in their approach to donor identification (at least as they have shared such in this article) is an intelligent approach to maximizing their chances of becoming parents.

Donors, according to both the FDA as well as the American Society of Reproductive Medicine are to be selected based on their health and fertility first. Couples who approach donor selection with an “I can buy superior eggs with more money” mentality and agencies and clinics that work with same are operating outside of agreed upon industry practices and are exactly the sort of folks who invite government intervention where a significant majority of practitioners agree to self-regulate, practice within the ethical industry guidelines and in a manner that does not encourage a coercive enticement of young women into egg donation.

Let’s get connected!

Amy — Sun, 26 Oct 2008 23:20:29 +0000

For the many of you that are on Facebook, you may be happy to know that Prospective Families now has its own Facebook page. Our page has feeds directly from our blog, videos, news, and events. If you are on Facebook you can become a fan and stay connected. If you are not on Facebook, you can still check out our page, where they will also provide you with a link to sign up. The link to our Facebook page is:

http://www.facebook.com/pages/Wellesley-MA/Prospective-Families/27764169698?ref=ts