SART Statistics are just spring board – a place to start

With the SART statistics recently published there’s been lots of rumblings about some of our beloved clinics and their success rates taking a hit for 2010. I think before we become too concerned about our clinics and their success rates we need to remember the following:
• No two treatment programs are alike; each clinic has its own set of statistics (success rates), protocols, and procedures.
• SART and CDC success reports are always two years behind. For instance at the time of this writing it’s February 2012, and SART’s reports are for 2010. That means that the success rates you are reading for 2010 may not be at all reflective upon current success rates for that specific clinic.
• Becoming familiar with SART and CDC statistics in instrumental to choosing a treatment program. They are a great place to start and can help you narrow your choice of potential clinics.
• While doing your research, keep in mind that statistics are going to fluctuate from year to year for many reasons. That’s why it’s really important to look for success rate trends: Is a clinic generally improving its success rates each year? Are they maintaining and/or growing the number of (DE) cycles they complete each year? Do the statistics illustrate an overall consistency of success?
• The SART success rates for each clinic report a “live birth rate” or what we refer to as a take home baby rate. Some feel this isn’t entirely fair on the part of the infertility clinic because once your Reproductive Endocrinologist releases you to your OBGYN/Perinatologist they have no control over your pregnancy and cease to monitor your pregnancy or its care.
What I am learning is that sometimes it’s virtually impossible to compare clinics and SART rates. Why?
• Some clinics for instance are under one company name but have clinics in different places and they don’t all use the same lab but SART will gather their statistics and lump them into one big fat statistic.
• Individual doctors are listed by success rate – which I think they should be.
• And SART reports on live birth rates, or take home baby rates which I think is unfair. Your clinic should be rated on initial pregnancy or pregnancy to heart beat as measured on ultrasound, not live birth rate. From week 12 to week 40 there’s a lot that can happen and after the first trimester your pregnancy is out of your clinics hands.
So with all this being said – sure start with statistics. But make sure to do your homework and call the clinic you are interested in being treated at. Ask tons of questions – “Are your success rates based on single DE IVF cycles, or are your success rates based on three attempts at your clinic”. Ask about their FET policies. Does the clinic return emails or phone calls in a prompt and timely manner? Is their staff kind and courteous and accurate in the information they relay to you?

It’s not just about the statistics – it’s about the whole package.

Good luck on your DE journey!

Should Egg Donation Be Regulated?

And really what does it mean to regulate? Wikipedia says this about regulation:

“Regulation can be considered as legal restrictions promulgated by government authority. One can consider regulation as actions of conduct imposing sanctions (such as a fine). This action of administrative law, or implementing regulatory law, may be contrasted with statutory or case law.

Regulation mandated by a state attempts to produce outcomes which might not otherwise occur, produce or prevent outcomes in different places to what might otherwise occur, or produce or prevent outcomes in different timescales than would otherwise occur. Common examples of regulation include attempts to control market entries, prices, wages, pollution effects, employment for certain people in certain industries, standards of production for certain goods, the military forces and services. The economics of imposing or removing regulations relating to markets is analyzed in regulatory economics.”

As it stands right now today, in 2008, there is no regulation regarding egg donation. Zero, zip, nada, nothing. The egg-donor industry is not required to keep records of its egg donors.

What does that mean? And I am asking these questions because I truly don’t know.

Does this mean agencies don’t keep records of who applies, who’s accepted into their program, who’s donated, and to whom? I know clinics by law are required to keep records on their patients I think forever. They may go away to storage some place but I don’t think medical records can be destroyed.

(Someone correct me if I am wrong)

There is a doctor in Arizona, Dr. Jennifer Schneider who has gone to Congress to lobby for a National Egg Donor Registry, which I fully support. The concern about a National Egg Donor Registry is that it will potentially dissuade egg donors from donating because it would mean they would be giving personal information to a registry with the understanding they might be contacted down the way from parents or off spring their genetics helped create.

I say make the medical portion of it mandatory, identify egg-donors by number, and if the personal information part of that is a big hairy deal let’s make that part “voluntary” don’t make it mandatory. I think that’s the part that’s making everyone say “ooooh not sure if that’s a great idea, we’ll lose egg donors.” We’ll lose egg donors if we pass a law making compensation illegal. I am not so Pollyannaish to think that egg donors don’t appreciate the money they make donating their eggs. Even my egg donor, who was amazing, was very very honest when she said in her profile:

“I guess it was partially for financial reasons ($2000 can put a nice dent in my student loan debt), but also I want to help others...”

It doesn’t get any more honest than that, and that’s fine with me.

So back to regulation and registries – I don’t think that egg donors are going to run away in fear if they are given the option to volunteer with a national registry in the event the parents of these kids need to look up their egg donor for medical reasons later in life.

Clinics and agencies vary in regards to how much information they collect about the egg donors they recruit. I know of agencies and clinics who like mine collect a 16-18 page egg donor profile on prospective egg donors. This profile covers everything from A to Z. Medical history, social history, educational background, physical characteristics, personal characteristics, reproductive history and what not. There are other clinics and agencies who collect the basics, medical information, eye color, hair color, race, and that’s it. And for the majority of the recipient parents I engage with sometimes the lack of information about their egg donor is extremely frustrating.

I think what the media and general public sometimes don’t understand that those of us who are choosing to create our families through egg donation are not looking for mothers for our children. This registry wouldn’t mean that 18 years later an egg donor is going to receive a knock on her door from the off spring she helped create with a “Hi Mom, nice to meet you.” It would be a way for those kids who are products of egg donation to have access to their medical information, which I think is a basic right. And not to channel Dr. Phil -- but let's get real here. These kids did not sign up to be brought into the world this way, and its the least we can all do to make sure the needs of our children are met.

The other issue revolving around regulation is the compensation part. The American Society of Reproductive Medicine’s Ethics Committee (ASRM) has written a guide regarding egg donor compensation . In this guide it states:

1. Financial compensation of women donating oocytes for infertility therapy or for research is justified on ethical grounds.

2. Compensation should be structured to acknowledge the time, inconvenience, and discomfort associated with screening, ovarian stimulation, and oocyte retrieval. Compensation should not vary according to the planned use of the oocytes, the number or quality of oocytes retrieved the number or outcome of prior donation cycles, or the donor’s ethnic or other personal characteristics.

(I personally think because this is not a law, but a guideline that some agencies skirt around this – if I am reading this correctly compensation should be set at one price and one price only. An egg donor should not be compensated more if she’s a proven donor? An egg donor should not be compensated more if her ethnic background is hard to come by? For instance Asian donors, Jewish Donors, and Middle Eastern Donors, are in high demand – and the amount they are compensated reflects that. Same for those egg donors who are deemed “super stars”.) - Marna

3. Total payments to donors in excess of $5,000 require justification and sums above $10,000 are not appropriate.

(Okay here’s another hot spot for me – I can list several egg donor agencies right now who have signed an agreement with SART that they do and will abide by the ASRM Ethics Committee guidelines governing payments to donors. But guess what folks they don’t. They get around those guidelines by stating that the egg donors fee is only for 10k, however, the egg donor agency is also compensating her for lost wages from her job, or other expenses that go above and beyond regular and customary travel expenses). If an egg donation agency does not agree with or abide by ASRM's guidelines, then don't sign the agreement. I think that's where agencies get themselves into trouble. There is nothing wrong with stating you don't agree with something. The sticky wicket comes from saying you do agree, and then doing the complete opposite.)

4. To discourage inappropriate decisions to donate oocytes, programs should adopt effective information disclosure and counseling processes. Donors independently recruited by prospective oocyte recipients or agencies should undergo the same disclosure and counseling process as donors recruited by the program.

5. Oocyte-sharing programs should formulate and disclose clear policies on the eligibility criteria for participants and on how oocytes will be allocated, especially if a low number of oocytes or oocytes of varying quality are produced.

6. Treating physicians owe the same duties to oocyte donors as to any other patients. Programs should ensure equitable and fair provision of services to donors.

7. Programs should adopt and disclose policies regarding coverage of an oocyte donor’s medical costs should she experience complications from the procedure.

So the big question is – who should regulate the egg donor industry? Should the clinics and agencies regulate themselves, or should the government step in and regulate something they have no knowledge, understanding, or idea about.

Our answer might be in a new group I have had the pleasure of learning about and becoming involved with – this group is called EDSPA. EDSPA is a multidisciplinary organization that promotes cooperation, education and professional ethics in the matters of surrogacy, egg donation, pre-planned adoption and related areas. This group in particular shows great promise I think because they truly want what’s best for the patient. And they recognize the patient not only as the recipient/intended parents who is seeking services but also the egg donor who has so graciously given a very important part of herself so folks like me can become Moms. Regardless it will be interesting to see how EDSPA grows and blossoms in the years to come.

It’s my hope of course that regardless of what solution we in the United States find to resolve the issues we have now in the egg donor industry we are able as a group to come together and work out a fair and equitable solution that can accommodate not only the egg donor and recipient parents, but the medical community as well.

Really – What does the “C” in Customer Service Stand For?

“Curt”?
“Can’t be bothered”?
“Condescending”?
“Crappy”?
“Controlling”?
“Cantankerous”?
“Cold”?
“Callous?”

Get my drift here? See where I’m going with this?

Now I realize that this post is going to most likely anger some of you in the service industry. And so I am going to apologize ahead of time if I step on a few toes, but really this post has been a long time coming.

This article is not about most fertility clinics or egg donation agencies, it's about some. But the issue is that some of these agencies and fertility clinics who are not providing appropriate or even good customer service are making things tough for the entire industry. (Marna Gatlin, PVED)
From the moment I step into your clinic I am your patient, client, or customer. My money that I am paying for service at your clinic, agency, or firm is going to pay for your salaries, mortgage, car payment, vacation, your child’s braces, your alimony, child support, your child’s private school or college tuition, or other living expenses.

My responsibility to you is to be on time for my appointments, follow your advice, ask questions if I don’t understand the information given, make requests that are reasonable, be mindful and respectful of your time, be honest with you regarding questions you ask regarding my health , bring my insurance information each time I have an appointment if applicable, and pay my bill on time.

I have had to give up any control I have ever had regarding my body. It doesn’t work the way it’s supposed to. All I want to do is have a baby for God’s sakes. It shouldn’t be that hard. I turn to you, to the experts because you have come recommended to me, and I am assured you will take the very best care, and help me through this difficult time in my life.

But that’s not how it always plays out. For some patients, infertility treatment of any kind becomes a nightmare, and not because of the treatment itself, but because of their experience with their clinic or agency.

I am tired of being treated rudely but your staff because they are having a bad day. We all have bad days. I am also tired of being ignored, spoken to in a condescending tone, or treated like a child. I am not a child. I am an infertile woman for God’s sakes, who has way more education than some of you combined!

I realize that we define Customer Service as any contact, whether active or passive, between a customer and a company, that causes a negative or positive perception by a customer.

However, one would think that clinics and agencies especially would put their best foot forward when dealing with patients and clients. Don’t they know we are their bread and butter, and that word of mouth is one of the biggest advertising tool out there?

Some of the stuff I have heard over the past six months has been utterly amazing:

“I didn’t call you back because I felt there was nothing to worry about.”


“We are busy here Mrs. Smith, we can’t call everyone back who calls us you know.”

(Yeah, you know what? I am busy too, and I have waited a week for you to call me back about your clinic, so guess what, I’ll take my 25k to another clinic who actually returns my telephone calls.)

“We don’t do injection teaching here at this clinic, we figure everyone is pretty Internet savvy, and you can learn how to inject yourself on the Internet.”

(Can we say “potential lawsuit?”)

"The time my RE oh-so-sensitively told me, after informing me that my last IVF with my own eggs was again canceled due to poor response, "I think you are done with IVF."

(Oh really? How nice of you to make that decision for me, at a time when I'm clearly devastated. I switched RE's)

"When the report came back from the psychologist regarding the first donor we chose, there was mention of her needing to return to college on a particular date. I questioned whether or not we had sufficient time to go through this process and our egg donation agency insisted we did. When we signed up, we were told that a clinic rep accompanied every donor to the first doctor’s visit. The first donor we chose (in the first week, I might add) went to the first doctor’s appointment at the Infertility Clinic alone and was supposedly never heard from again. According to my doctor, she had no clue about how the process works and told him that she needed to return to college on a certain date. She was shocked to find out that he would be dictating the schedule and not her. The clinic offered no apology and we were told “this never happens”. Well obviously it did!?!? And obviously the psychologist and I saw it coming?!? They wanted to charge us for a rematch. My lawyer got involved and they ended up not charging us."


"On my second failed procedure with my first RE, she called to tell me the bad news. I asked her a few questions and during the discussion she told me that "you were lucky to have had your son" in a condescending tone. It literally took my breath away and my heart felt as though it fell to the floor. We had no trouble conceiving my son and didn't get any fertility help until having three consecutive miscarriages after having him, so it's not as though we perceived having him as medically lucky. Although their may be some technical truth to what she said, I see no value in telling it to me. I believe it was mean spirited and we switched RE's. By the way, this particular RE had horrible SART statistics. If only I knew then what I know now, I would have seen a much better RE initially."


"They began sending us profiles that did not meet our single-most important criteria which was blue eyes. We were not asking for a lot of criteria, just similar coloring to me and most importantly blue eyes. After a dozen or so profiles of brown and hazel eyed candidates (who, by the way, had no other resemblance to me either) I called the clinic and the representative actually asked me “Isn’t hazel good enough?” Meanwhile, she interrupted our conversation to take a phone call from her daughter. When she returned, I asked if she can see the resemblance to herself when she looks in her daughter’s eyes. After she told me she could, I explained that the possibility (just the possibility) that I might have a chance to have a blue eyed child was one way that I too might be able to have that same feeling when I look into my child’s eyes.

She promptly sent me blue-eyed candidates."

(I should hope to shout she sent this mom blue-eyed candidates, if she wanted hazel eyes she would have requested an egg donor with hazel eyes. Isn't hazel good enough - oh please, this is not like this mom is ordering a damn car, her feelings matter for goodness sakes.)

"With my first RE ( I switched REs later), pursuing conventional IVF with my own eggs, on my second protocol, I went in for monitoring and did not have much follicular recruitment. The US tech asked if I wished to speak with the RE. I did. She put me in a little waiting room, and I waited for over TWO hours with no one ever coming in to check on me. When the RE finally appeared, it wasn't what he said, it was all his body language. He was clearly irritated that I wished to speak with him, and he clearly didn't find it within his job to take time to speak with me. This same RE later spoke with DH on the phone about the dismal results and told us the clinic would be terminating our shared risk agreement due to "something unforeseen wrong with my eggs that no longer made me a good candidate" and when asked what else we could do, told us "adoption". This was in a large clinic where they have a DE program. ????????. Granted, it wasn't me who spoke with him on the telephone, so I am not sure EXACTLY what was said, but there is no love lost with this MD, who is a sixty something year old, and the clinical director of the large practice. So at that point, I am devastated, and wondering if I am in danger of dying from "something unforeseen wrong with my eggs"...at age 33... you know, a little touch of compassion for the folks who shell out the big bucks so you can earn a living might be nice...gee, I am getting angry just reliving this..."


"The second donor we chose never showed up for the first doctor’s appointment at the Infertility Clinic and was supposedly never heard from again (now, I’m suspicious, considering this “never happens”). According to our egg donation agency, a representative was meeting her at the clinic, although I never thought to contact my doctor to confirm (no surprise that I had my suspicions about this too) The clinic offered no apology or explanation. We then decided to explore other clinics/options and they charged us $900 to leave the clinic for “services rendered”. What service?!?

All’s well that ends well as I am now almost 31 weeks along however we (the DE recipient community) shouldn’t be subjected to these shenanigans to begin with. Our egg donation agency  set us back a year time-wise in this process. Plus, we ended up losing about $3,000 as a result due to the $900 charge to leave the clinic and additional money set aside in my flexible spending account that went unclaimed. Let’s not even mention the emotional and psychological affect it had on myself, my husband and our marriage while we recovered from the financial setback and reeled from the thoughts that this might never happen for us."

(This Mom had a great outcome, but how many others don't have great outcomes and no one to advocate for them?)

“Well we kind of promised this donor already to another couple, but we also promised her to you because we wanted to make sure she would cycle this spring.”
(You kind of promised this donor I already put money down on ??? Because the egg donor wanted to make sure she would have a for sure cycle in the spring at my expense?)

“Bleeding is normal, don’t sweat it.”
(Excuse me, bleeding is not normal, it’s COMMON but it’s not normal.)

And then there are the sighs, groans, teeth grating, and the tone of voice that occurs when you seem to ask a question that whoever is on the other end of the phone doesn’t want to deal with. All of the sudden we become big fat inconveniences and burdens, and that doesn’t make anyone feel great, I don’t’ care who you are.

And some clinics and agencies don’t bother returning calls or emails for days and days.
I have even had women ask me – “You don’t think the clinic would intentionally screw up my cycle because they don’t like me, think I am a pain in the neck, or a problem patient.”

Now that is just darn sad.

And your front office staff, your front line, who’s supposed to our first contact with your clinic or agency. News flash folks – If I can hear your receptionist refer to a patient on the phone as a pain in the ass or a bitch – then what in the hell are they saying about me the moment I hand you my check for the 500 bucks I once again spent at your clinic as I walk out the door?

With that being said, we KNOW and REALIZE we are not your only client or patient. We know you have other people to interact with other than us during your day. But our concerns, questions, and issues are valid. You can be rest assured if your clinic or agency called we’d be hopping to and returning a call in a 24 hour period.

From where I stand it’s all about an imbalance of power. The clinics and agencies have it, we don’t. They hold our reproductive lives in the palms of their hands. Is that the way it should be? I don’t think so. I think there needs to be a balance.

You are our service provider, we pay you for that service. One would think that in return for appropriate medical care we’d receive decent customer service.

One would think.