The International Council on Infertility Information Dissemination, Inc

INCIID, founded in 1994, turns 20 this year. It was founded virtually during Resolve's infertility awareness week when there was no information anywhere to be found on the Web about infertility. The Internet for the public in those days (1994) was very new - but there was a WWW (World Wide Web) and INCIID established a spot on it in late 1994 before we received our nonprofit status in March 1995. In fact INCIID was the first infertility site on the web.

Most people using INCIID in the 21st century are a lot younger and might not understand the references to Mr. Peabody & his Wayback Machine but if you Google Wayback Machine - you'll find an organization that catalogues websites. The INCIID Website - predates even the Wayback Machine by more than a year. The earliest pages on INCIID went up at the end of 1994 and the Internet Archive (known as the Wayback Machine) started in 1996. There was resistance from some businesses when INCIID was founded. One statement in particular was that we shouldn't incorporate or establish INCIID as the "Internet was a place people learned to blow things up." What?

Infertility is at least a 2 billion a year business but that is probably a bit on the low side. Last year the ASRM reported that the biggest anxiety producer for those in treatment is cost - well there's a big surprise - not!  My question to those individuals reaping the rewards of their practices is what are you doing to help patients with this huge anxiety producing cost  - what are you doing to give back to the patients? How are you paying it forward to the patients providing your bread and butter. The silence is deafening. There are a few who do absolutely give back - we refer to them as "Doctors with Heart." But lest I digress - I really want to know how much YOU really know about the baby business? Infertility treatment IS a business and it's a lucrative business.

OK - So we all know that in our society where ever there are big $$ bucks $$ involved you can bet there are some practices one might not think of as quite kosher, proper and above board. One place I think couples investigating IVF mistakenly start their homework is by looking at the  statistics reported to the public. INCIID has been discussing and speaking about the (now reported) CDC statistics since its inception 20 years ago. Do you realize there is a lack of "real" accountability or oversight on reporting IVF statistics. I think that if you are at all interested in evaluation of a clinic where you want to look at the statistics on IVF, you must first look at the history of how this all started. In 1984 the Society for Assisted Reproductive Technology (SART) was established at a meeting of the American Fertility Society now the American Society for Reproductive Medicine. At the time, it was named the "IVF Special Interest Group" in order to report only pooled data of its membership (no clinic-specific data) for inclusion in the IVF Registry. How quickly that changed to what it is today. I think the idea behind this was good but I also think these very smart guys (men and women) shot themselves in the foot by putting the "fox in charge of the henhouse." and self-reporting with no oversight.

Wouldn't you think that the math on figuring out how many live births vs. how many cycles of IVF completed pretty simple. - Nope -  As someone wisely said, "the devil is in the details."  If you really want to confuse yourself, look at the introduction here on the CDC website. Oh yes, and did I mention the stats on IVF reporting are several years behind - so the stats that are being reported now come from 2011. What?  In our technological rich era, why would anyone make a decision on something so important based on antique statistics. A condition of becoming a SART member is, "Annual submission of cycle-specific clinic outcome data to the SART Registry, verified by Medical Director, with permission to disclose such data to the public and to allow data to be validated. Approximately 8-10% of reporting clinics are validated each year." [Empahsis is INCIID's] And my questions would be what does "validated" even mean? When you click on a clinic and go to their statistics page, you get a warning message that states, "The data presented in this report should not be used for comparing clinics. Clinics may have differences in patient selection, treatment approaches, and cycle reporting practices which may inflate or lower pregnancy rates relative to another clinic. Please discuss this with your doctor." [Emphasis is INCIID's]  And by all means DISCUSS these self-reported statistics with your doctor - that is the same doctor who self-reported them with no oversight - huh? The truth is that you need to protect yourself by asking questions. 

There are so many individual and clinic variables; doctors shift from one clinic to another or embryologists change or new methods are developed. There are so many variables to understand in making the right decision (for YOU) on where to get treatment - So how do you select the right clinic?  I think you arm yourself with as much information as possible and you ASK a lot of questions. .

One of the most frequently asked questions we get is, "What is the best IVF Clinic?  My response is "What do you mean?. There is never a one-size-fits-all solution to a issue that has so many variables. First you need to get a good diagnosis.Once you can locate the problem or the lack of locating it (as in unexplained infertility) your next step is a plan of action. The clinic that diagnoses you may not necessarily be the best place for your treatment or IVF. I once had a call a number of years ago from a man who had a very low sperm count. At the time only the larger clinics were performing ICSI. The diagnosing clinic told him his only hope was use of donor sperm. This clinic didn't have a lab that was equipped to perform ICSI and they didn't volunteer this information to the patient. So this poor man was devasted until we gave him the information on ICSI and he found someone who did the procedure he needed. There are excellent doctors out there who care about patients but there are also those don't give back and don't understand or care to understand empathy for what the patient is experiencing. One of my favorite Robin Williams quotes in the movie Patch Adams is, "You treat a disease: you win, you lose. You treat a person, I guarantee you win- no matter the outcome."  If only doctors would learn to live this idea. Doctors with Heart do this for patients when they donate to INCIID - especially those that donate their services for IVF patients!

The InterNational Council on Infertility Information Dissemination (INCIID - pronounced "inside") is a nonprofit organization that helps individuals and couples explore their family-building options. INCIID provides current information and immediate support regarding the diagnosis, treatment, and prevention of infertility and pregnancy loss, and offers guidance to those considering adoption or childfree lifestyles.

In April of 2004, INCIID launched the first and only National IVF Scholarship Program for those who have medical need for IVF but who are without financial resources and insurance making the procedure out of their reach. Find out more about the scholarship

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