Preimplantation Genetic Diagnosis-Baby's Beginning

My experiences of concieving our first child using preimplantation genetic diagnosis

Monday, September 11, 2006

Financial response from Chicago

I never got a response to the email I sent to the Reproductive Genetics institute in Chicago, so today I sent another one, through the automatic "contact us" link on their page, requesting a phone consultation. I got an email reply to that today, with at least some of the cost info that I wanted. They said the total cost of the procedure is about $13,000. The PGD analysis part that our insurance doesn't cover is about $3,500. They didn't give any figures for the cost of freezing and storing leftover embryos, although I requested that. But at least now we have some idea of what to expect!

Our infertility insurance should cover 80% of the expenses, excluding the PGD analysis. So the 20% we would have to pay of the about $9,500 is $1,900, say $2,000. So we're probably looking at a total cost of $2,000 + $3,500 for the PGD analysis + flight & lodging expenses for going and staying in Chicago, say maybe $1,000, and there's always some extra expenses, so we're probably looking at about $7,000 out-of-our-pocket expenses. Sigh. About what we expected.

It makes me think again though about how long to keep trying to get pregnant natually. Maybe we can keep trying a bit longer than I was originally thinking. The prenatal test and abortion is significantly less expensive. Well, we'll see at the end of the year like we planned, if I haven't conceived by then.

15 Comments:

Anonymous Anonymous said...

Hi, how did you determine the centre in Chicago is better? Is there any place where I can find rankings and comparisons for the different centres? Thanks

Sunday, October 22, 2006 7:52:00 p.m.  
Anonymous Anonymous said...

Hi,
My name is Nadia Awad and I work with CBC Radio in Canada for a program called, "The Current." I'm working on a story on PGD and was wondering if we could chat. I'm having difficulty finding people in Canada willing to speak on the subject. I's love to get your thoughts on the PGD process.
My number is 416-205-6826. Thanks so much,

Nadia Awad
CBC Radio, The Current

Friday, November 03, 2006 10:51:00 a.m.  
Anonymous Anonymous said...

You may try in Reprogenetics:

www.reprogenetics.com

It looks like they work with several IVF centers in Seattle:

- Overlake Reproductive Health Inc PS, www.fertileweb.com
-Northwest Center for Reproductive Sciences, www.nwreprosci.com
- University of Washington
- Seattle Reproductive Medicine),

The most important thing is that you had a genetic report with the mutation identified. It´s important also to know whether you have any relative with the mutation. For instance, if you carry the common deletion in the IP gene, it will be difficult to develop a PGD test to detect directly your mutation. However, if you have family members that have also been tested genetically (brother, mother... regardless if they are affected or not)it might be possible to design a specific test for you.

This is their contact information:
PGDteam-molecular@embryos.com

Good luck!!!

Anne

Monday, November 06, 2006 3:50:00 p.m.  
Anonymous AK said...

I am about to start my first cycle of IVF with PGD, and have quite a bit of information to share if you're still interested. My sister and I both have the same rare genetic disorder, and she completed her first IVF with PGD in September (and is now 20 weeks pregnant with a healthy little girl).
First of all, it looks like you're considering traveling to a different city to do the IVF, which could make the process even more costly than it already is. While it is important to work with an RE who has experience with PGD, it isn't all that important since they're not really the one who do the PGD anyway. I interviewed a few REs and ended up choosing one who had experience in dealing with a case like mine, and who had an established relationship with a PGD lab (which is the more important piece). There are only about three labs in the county that do PGD, and it is not at all necessary for you to be anywhere near them while going through your IVF. Your RE and embryologist will bring in a specialist to biopsy the embryo, then they'll send the biopsied cell to the PGD lab- which turns out to be standard practice. The PGD lab will look at the one cell taken off of each embryo, and then call your embryologist to let them know which corresponding embryos are healthy. Since only the biopsied cell travels to the PGD lab, the embryos will still be safely awaiting transfer at your RE's lab (the biopsy and PGD happen on days 3 and 4, embryo transfer on day 5). I live in Houston, my sister lives in Massachusetts, and both of our REs are using a PGD lab in New Jersey to send the cells to. The lab in NJ is called Reprogenetics (at St. Barnabus Hospital), and is run by Santiago Munne (the guy who pretty much invented PGD). Btw, Reprogenetics has a PGD lab in CA as well.
There are a handfull of details to consider when shopping for an RE to work with when preparing for IVF with PGD. My sister and I have both researched things pretty thoroghly and interviewed a few REs, so I'd be more than happy to share what we've done so far if you're still looking for information. Good luck!

Thursday, January 04, 2007 6:26:00 p.m.  
Anonymous Anonymous said...

I would be really interested to correspond wth you about your experience. I see you haven't posted since sept 2006 and i'd like to know whether you have gone ahead with the PGD or not. I am researching a television documentary for CBC television, Canada highlighting the developments in reproductive technology and would be very interested to hear more about your considerations and experiences. You can email me at snowbeck@aol.com

I hope to hear from you and wish you all the best.

Friday, March 16, 2007 12:44:00 p.m.  
Anonymous Anonymous said...

HI,

I came across your blog while searching for reviews on RGI in Chicago and Stanford Hospital. I find myself in a situation you have already undergone - the state of confusion.

I am a carrier of Fragile X and have a son who happens to have the full mutation of the gene. (Fragile X is similar to Autism).

We are now planning to undergo IVF. Since I live in the San Francisco area, I chose Stanford except that Stanford can only perform PGD on the embroyos and not the eggs. With the kind of genetic testing I need, it's important to do both the egg and the embroyo testing and RGI happens to be the only place doing so.

I am now trying to decide whether I should do the IVF and PGD, both in Chicago or do IVF at Stanford and have someone fly over from RGI, Chicago to do the PGD.

RGI is turning out to be so expesive that my Insurance will only be able to pay for one cycle. (I have an IVF max of 15K from my insurance, excl. medications) whereas with stanford,I might be able to get through 3 cycles with the same limit.

Pls advise. Tell me of your experience. How many cycles did it take you? Is RGI also better at doing IVF in addition to PGD or does it not matter where I do the IVF from?

Thank you so much. eagerly waiting for your reply. You can also email me at sadaf.ahmed@gmail.com

Regards....

Sadaf Ahmed

Thursday, April 05, 2007 2:51:00 p.m.  
Blogger PGDMom said...

Sorry about the late response -

About which centre is the best -
The reason I believe it's the best for us is simply because they're the only ones in our country that I could find that actually have experience doing PGD for IP. IP is very rare, so just that simple fact really determined our options.

If your disorder isn't so limiting as mine, some things to consider are:

- Size of the institution. Is it just one doctor doing his thing, or are there many doctors and specialists at the institute? More is better, since that means generally more experience and more specialization.

- Specialty of the institution and frequency of PGD procedures. Some institutes do many IVFs but only occasionally a PGD. You want one with lots of experience.

- Financial advisors, some institutes have financial advisors that will help with your insurance papers and what not

- In-network institutes, if you live in a big city, then you might be able to find an institute that's in your insurance network. This would be a big help if your coverage differs for in and out-of-network services

Sorry, I don't know of any rankings/comparisons for different centres, however since our options were so limited by my disorder, I didn't really look that hard either, so they may exist.

Good luck!

Sunday, October 21, 2007 12:23:00 p.m.  
Blogger PGDMom said...

Nadia,

I'm sorry I haven't checked my blog in about a year since we were trying naturally, and I'm guessing your radio program has long since aired.

If you'd like to correspond in the future, I'd be happy to help. Since our plan of trying naturally failed, we will definitely be doing PGD now so I'll be checking in here regularly.

Sorry I missed you!

Sunday, October 21, 2007 12:30:00 p.m.  
Blogger PGDMom said...

Anne,

Thanks for the info!

Sunday, October 21, 2007 12:31:00 p.m.  
Blogger PGDMom said...

Ak,

We're not going to Chicago for the RE. I'm planning to get as much care as possible at home, such as exams, hormone drug administration, and what not. But for the actual IVF/PGD procedure we want to go to the Chicago institute.

Reproductive Genetics does offer the option of sending their embryologist to our location, but we just feel safer going there for the procedure. It might not be the best decision economically, but I think about all the equipment and facilities they have there, and I just feel more comfortable being at their institute and also not having to send out the cell analysis somewhere else.

What also bothers me is that although there are places that do PGD in Seattle, PGD doesn't seem to be that common, especially compared to the Chicago institute. I want to be somewhere where it's all routine, where I don't have to worry about being a special case. We went to an infertility seminar at Seattle Reproductive Medicine, and they didn't even mention PGD in their presentation, although their website covers it.

I've also had some trouble with the sending of cell samples in the past. It's supposed to be no problem, right? They just send it off, then you get back the results. No big deal. But I've had problems twice now. The first time was when I got tested for IP myself. They sent off the sample, the results somehow got sent to some other clinic, and even though the test was done in a week, it was months before I got the results back! Again, when I was pregnant and they sent off my CVS sample, we didn't get the results back for over a month although it was supposed to take about 2 weeks.

Although I know problems like this aren't that common, since we seem to have bad luck with it, I just don't want to risk having to wait extra time, or things getting mixed up/delayed with samples and results getting sent back and forth. Besides, we've never been to Chicago! :)

Sunday, October 21, 2007 1:13:00 p.m.  
Blogger PGDMom said...

Dear Sadaf,

I'm sorry for the late response. As you probably read, we were trying naturally for awhile and so I hadn't checked in here for awhile. You may have already done your procedure, but if you haven't, I'll try to help.

As you probably read, we were faced with the same decision - whether to do IVF at home and have Chicago send their embryologist here, or go to Chicago for the whole thing. We decided to go to Chicago for the whole thing because we just feel safer going there for the procedure. It might not be the best decision economically, but I think about all the equipment and facilities they have there, and I just feel more comfortable being at their institute and also not having to send out the cell analysis somewhere else.

Generally speaking, it's probably better financially to do as much as possible at Stanford and just have them do the PGD analysis at RGI. One thing to check out though is Stanford's IVF success rates vs RGI's success rates. They probably will have these posted on their websites.

This will be our first IVF/PGD (and first IVF). Most people that I've talked to have had success with IVF the first time, or within the next two times. Many the first time. Everyone I've talked to that did IVF w/PGD had success the first time. However, IVF success rates are usually quoted at 60%, so it could be that I've just met lucky people.

It's a tough decision, and I'm sorry I can't help more.

Sunday, October 21, 2007 1:35:00 p.m.  
Anonymous Anonymous said...

I just did an IVF-ICSI 5d at IVI Barcelona (I am an American woman residing in Spain). 9 eggs were retrieved, 6 were fertilized, 3 made it to blastocytes, 2 of which had chromosomal disorders so only one was implanted which aborted. I think the IVI did an excellent job but I do not believe that there are that many ovule donors with my Dutch-German-English-etc. background. Given the stats regarding my age group (I will be 43 in 2009) we are interested in going ahead and using Donor Ovules through RGI in Chicago (to better match my physiognomy and avoid pointless IVFs). Has anyone had any experience with RGI Chicago regarding this? Or, can anyone recommend another center where "all" is handled from donor ovule to transfer?

Saturday, January 03, 2009 9:38:00 a.m.  
Blogger PGDMom said...

Anonymous -
I'm sorry your IVF didn't work out. I know how much that stinks to go through all that for nothing! I'm sorry I don't know anything about donor eggs though...

Friday, June 12, 2009 2:00:00 p.m.  
Anonymous Anita said...

Dear PGDMom,

Thanks a lot for setting up this blog. Its been about 2 yrs since you started this blog and still relevant information on PGD is hard to come by.

My Case:
We had multiple miscarriages before we realised that its got something to do with our chromosomes. We live in India. PGD is very rare here.
We have finally made up our mind to try PGD in the US. Dear AK, you have mentioned that there are 3 labs that perform PGD. Which are they? The quotes we have received so far are approx $20,000. Please suggest if there are other places where it may be cheaper. (one is the centre in chicago PGDmom has mentioned) - in or around seattle is preferable ....
Thanks a lot for all the help

Friday, October 30, 2009 12:41:00 a.m.  
Blogger PGDMom said...

Anita -
Since you live in India, have you also checked clinics in Canada, Australia, and the UK? I don't know anything about prices there, but the US isn't the only place to do PGDs. If you haven't looked into it, it would be worth checking out prices for clinics in those countries as well. I lived in Seattle and I know there are no good PGD clinics there.

Price should not be your #1 criteria for a clinic though. Make sure you put other factors first when making your choice. Personally I still recommend RGI in Chicago.

Tuesday, March 23, 2010 2:02:00 p.m.  

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