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This Month in HIV: A Podcast of Critical News in HIV
  

This Month in HIV: Having a Baby When You're HIV Positive

July 2007

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.

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Were you ever afraid of the risks to you or your child?

Christa: Honestly, at the time, my husband was probably more afraid than I was. I knew that even in Italy, using a procedure that wasn't deemed safe by our standards, that there wasn't any [HIV] conversion in people that were following a certain protocol. It was knowing that they were taking the extra step and washing sperm, and that there hadn't been any conversions. I knew that we were both responsible, and we would follow the protocol exactly as directed.

So no, I never believed that I was at risk. Really, in my heart of hearts, I didn't believe it. I'm sure my husband went through a little bit more fear over that, as he was the one who was positive and at risk of infecting me. But I didn't believe it. If I had, I don't think I would have. ... Well, you know what? I weighed the risks, and in my heart of hearts, I didn't believe that it really was a significant risk. And I was willing to take it.

Did you call different clinics? Did you just decide to call infertility clinics just to see if they would take you and your husband?

Christa: Well, I had to call around. One step that Dr. Kiessling didn't mention is, before we actually did the sampling, I had to go for a series of tests and blood work, and my husband had to go for blood work, as well, and send those results over to Boston. Then, if all of that checked out, then I went for -- I forgot -- what's the name of the test when they put the dye in and they look at the fallopian tubes?

Dr. Kiessling: A hysterosalpingogram.

Christa: Yes! I had to do that. So there was some testing done first, just to make sure that all my hardware was working, before we went through everything.

Dr. Kiessling, is that done with every patient that you take?

Dr. Kiessling: That really depends on the infertility clinic. Some clinics require that, and others don't. I think the clinic in Arizona required that.

Christa: Right. Also, I was an older potential mom. There were some other factors.

What does "older" mean?

Christa: I was in my late 30s. I was 35, I think, when we actually started the whole process, or 36, 37 when I conceived my son, and 38 when I had him.

So these tests are necessary when you do IVF, but are they necessary when you do something different? The cup method?

Dr. Kiessling: It really depends on the clinic. The Italian program required a lot of tests because they were doing intrauterine insemination. IVF programs don't always require all that testing if they can do a sonogram and just look at the ovaries by ultrasound and make sure that everything looks OK. If they suspect that there is any kind of inflammation going on or anything, then they require more testing.

Christa: In our case, when my husband had the blood work done, he actually had low motility, poor morphology, and low mobility -- which basically means, in English, a low sperm count. They weren't swimming too good.

U.S. Clinics That Help HIV-Positive Men Have A Child With HIV-Negative Women

Unfortunately, many fertility clinics are still reluctant to advertise that they help HIV-positive people have children. But whether you?re an HIV-positive man with an HIV-negative woman or an HIV-positive woman with a negative man, a growing number of fertility clinics in the U.S. will help, although few insurance policies will pay for this and it can get costly.

Since there is no comprehensive list of U.S. clinics that will help HIV-positive people, to find a clinic in your area, you?ll simply have to contact them all. The Special Program of Assisted Reproduction (SPAR) which is a program of Bedford Research Foundation, does sperm washing for HIV-positive men who want to have a baby with an HIV-negative woman. They have a list of fertility clinics across the U.S. that they will work with as well. The following is a sample of their fees.

Costs From Special Program of Assisted Reproduction (SPAR)
A program of Bedford Research Foundation
Initial Consultation with Dr. Kiessling
There is a $300 program initiation fee which is $450.00 included in the initial consult fee.

Semen Analysis and Sperm Cryopreservation
$345.00
(per specimen)

Viral Testing
$525.00
(per specimen)

If the sperm count and mobility are within normal limits, the specimen will be tested for viral burden. Two undetectable specimens must be collected before attempting an infertility procedure.

Sub Total (per specimen) $870.00

Total (for 2 specimens) $2,190.00

Analysis of specimen for assessment of infertility and viral issues. Freezing to keep alive.

This is a monthly fee per specimen. There is no charge for the first month of specimen storage. Specimens can be shipped to any cooperating clinic. A consent form and 30 days notice is required.
Specimen Shipping $425.00
Specimen Storage $25.00

The sperm?

Christa: Yes. And they weren't formed that great. So in our case, we did a procedure called ICSI [intracytoplasmic sperm injection] -- Dr. Kiessling can tell you technically what that is. But you take one sperm and you inject it right into the egg, and you fertilize the egg outside. And then you translate the egg back in.

Is that why you decided to use in vitro?

Christa: Yes. Well, that was the major determining factor for us. I checked out OK. My egg counts were OK, even for my age. But it was the sperm that wasn't great. So even if my husband was HIV negative, we may have actually had to do this for me to successfully get pregnant. Do you know what I mean?

So what was the in vitro fertilization procedure like? Your husband had to do the sperm wash, and he did it with Dr. Kiessling?

Christa: Right.

What did you have to do?

Christa: I had to start on a number of medications to actually control my cycle, and to kind of manipulate my body into thinking it was going through a pregnancy cycle. Dr. Kiessling, please jump in if I'm not explaining this correctly.

Dr. Kiessling: That's right. The clinic takes over your menstrual cycle that month so that they can try to get your ovaries to mature multiple eggs, instead of just one.

Christa: Right.

What were the medications?

Christa: I don't remember, honestly.

Dr. Kiessling: There's one possibility. It could have been just birth control pills.

Christa: No. For us it was definitely more than that. I was taking a lot of medications. I was actually taking injections.

Dr. Kiessling: So it was probably Lupron, then.

Christa: Yes. They were actually able to pretty much pinpoint when I was ovulating. I had like 48 hours from the time I went to the lab that was working with us here to get to Arizona, once they saw that the follicles were a certain size.

You had to really have -- for us, anyway -- flexibility in your schedule, to be able to kind of just go when we were ready to go. We also had to find ... For us, we didn't want to spend the whole two weeks in Arizona, waiting for that process to happen. Again, from a work standpoint, time and money -- all of that.

So I had to find a fertility kind of lab -- or just the place where they maybe do the procedures, but also do the blood work. A place that was willing to just do the blood work piece for us, and to draw the samples and look at the numbers, and fax them over to Arizona without actually doing the procedure.

Even that, at the time -- I just got on the phone with an open phone book in my area and was asking, insisting that I not talk to the nurse and that I needed to speak to a doctor, for confidentiality reasons. It took me about 20 phone calls, speaking to different labs, to find one that was actually willing even just to take my blood, and to get the results over to Arizona. That's how much of an issue that you can face dealing with this. I mean, I wasn't asking them to actually do a procedure. It was just to draw the blood and to send the test results over to Arizona.

So you had to be very determined to go through all this.

Christa: Oh, yes. Oh, yes. I mean, it was definitely something that I set out to do and I was determined. If there was any way to make it happen, I was going to do it.

I understand you had some difficulty getting the first sample of washed sperm shipped.

Christa: Oh, Baby X got mishandled by Federal Express. And we were joking around. I think it was our first. It may have even been our second sample, but I think it was our first. We had actually shipped it out. We drove all the way into the city -- I won't say what city -- but into the city, to get it out for a Saturday shipment so that it would arrive on Saturday.

We had to find a FedEx that was open late in the evening. And we got it over there. We paid extra to have a Saturday delivery. I was so explicit, and I went over it with the person a hundred times. Dr. Kiessling's lab never got it on Saturday; it got there on Monday.

It was so emotional for us. Because it's not just like they lost the package. It was the whole getting the sample from Boston -- or the package from Boston -- having to collect the sample. You know, you're like a little scientist, mixing things in a lab, getting everything ready. Packing it, sending it out. You know, potentially, this was our child. My husband was devastated. He was so upset. And ... just the time involved, and even just scheduling.

Because on Dr. Kiessling's end, on the lab's end, they have to schedule you. There's a very specific timeline. Someone's going to be at the lab there to take the sample. You could speak more to that, Dr. Kiessling. You know, to make sure that you're not just shipping the sample out, willy-nilly, at your whim. It has to be scheduled.

Dr. Kiessling: Right. The lab is staffed to handle those, I think, three days a week.

Dr. Kiessling, tell me how this all happens. Christa and her husband had gone to Boston, and seen you. Then when it's time to ship the sample, they're at home, and they just send you the sample. Is that how it works with everybody?

"If we detect any virus, the sperm are discarded. It's not a matter of how much virus can you wash away. It's really a matter of using sperm from a specimen that wasn't exposed to virus to begin with."

-- Dr. Kiessling

Dr. Kiessling: It can. Some people prefer to come to Boston. The lab has organized a sperm kit. A lot of ways of managing sperm were worked out 50 years ago, for dairy bulls, for very expensive bulls on dairy farms. So we know how to keep sperm alive for quite a while.

We understand this from bulls?

Dr. Kiessling: Yes. We understand this from bulls. That's right. So this kit has in it different parts. We need part of the specimen put in one condition so that we can test it for HIV in one way. And we need another part of it put into another condition so we can test for HIV a different way. Then the remainder is put in the stabilization medium so that all of those sperm can be washed and frozen. The easiest way for the patient to do that, actually, is in the privacy of their home.

For the most part -- although it's kind of a complicated procedure -- for the most part, once the patients have read through the instructions, nobody almost ever complains, and it's almost never messed up. So this is sort of one of those ... you know, if you can make a complicated dish in the kitchen, you can handle this. It's just that the beginning looks a little formidable.

I think that the wives probably have a major role in getting this done and packaged up, and sent off to FedEx. I don't think this is a guy thing. But it works, and it saves everybody a lot of travel. The solution that's used to support the sperm has been tested for a long time. We know that the sperm are very viable in this.

Then once the sperm sample gets to your office, the couple can come and do the next procedure anytime, right? Because once it's frozen ...

Dr. Kiessling: Yes, that's right.

Could they wait a year, or two years?

Dr. Kiessling: Yes, that's right -- once it's cryopreserved. Now we really insist that each couple have two specimens cryopreserved, because we know that the woman is going to go through something before -- she's either going to go through monitoring for the cup insemination, or she's going to go through hormone injections for IVF. And it doesn't make sense to then have all of this based on one semen specimen. And if those sperm don't wake up well, then she's gone through a lot of effort. So we make sure that they have two specimens in the liquid nitrogen tank before they go through an infertility procedure -- really, just to protect her.

So are there sperm samples shipped at one time, or shipped separately?

Dr. Kiessling: No, no. They are shipped all at once. They can all be shipped to the clinic at once. Some clinics are willing to store what they don't use; other clinics want to send it back to us for storage.

Christa: And there is a charge for storage. I just want to throw that out.

Dr. Kiessling: Yup. There's a fee for storing it, mostly so we can keep track of people. But shipping frozen sperm around the world is really very common. That part of it is well worked out. I don't think we have ever had a problem doing that. We do occasionally have problems with Saturday deliveries, I notice. But many people really want to collect a semen specimen on Friday, so we maintain that Saturday time slot.

Christa, why did you choose to go to Arizona for IVF?

Christa: For us, it was more of a financial issue. Also, once we met the doctor, there was a personal piece to it, as well.

Dr. Kiessling: We didn't have very many collaborating clinics at that time, did we?

Christa: No, not at all.

Dr. Kiessling: Right. The Arizona clinic has been with us a while.

So this was through Dr. Kiessling that you found the clinic?

Christa: Yes. There was also a clinic in New York City at the time that's still up and running. They did not accept our insurance. It actually cost less for us to stay in an extended stay suite, with a kitchen and everything, in Arizona -- it was very inexpensive, actually, in the area of Arizona that we had gone to -- and have the procedure done and fly out.

Because we were able to use frequent flyer miles, it just kind of worked out that it actually cost a lot less for us to do that than it would have been for us to pay, and only have insurance cover whatever the percentage was, or nothing, if we were paying ourselves for the procedure.

The procedure itself, when we got the price list from both places, it was actually less expensive in Arizona. I guess because everything in New York is more expensive.

What was the cost? Can you tell me?

Christa: I know that our insurance plan at the time covered up to $10,000 for a lifetime, for basically -- I don't know what the overall term is -- I guess fertility treatments. Going to Arizona, we would have had money available to do it again, a second time, if it didn't work the first time. So I don't have an exact, down-to-the-penny figure, because you have to figure it also covered all the drugs, all the injectables, the procedure itself, the follow up ... all fell under fertility treatment.

So when all was said and done it probably came out to about $5,000, give or take. Because like I said: we had money left over, that if it didn't work, if we had gone to Arizona again, we probably could have covered most of it under insurance at the time.

Dr. Kiessling: The range for IVF treatment is anywhere from $6,000 to $15,000, depending on the clinic.

Christa: Well, yes. Keep in mind, also, this was back in -- how many years ago was it now? Like, five, six years ago. So even in that time, I'm sure things have gone up.

Dr. Kiessling, what is the cost at your clinic for the sperm washing?

Dr. Kiessling: I think it probably has gone up. For the testing, the cryopreservation, and the storage. I should have looked that up. But I think it's about $700 or $800 per specimen.

And that doesn't include the procedures that will be done to the woman?

Dr. Kiessling: That's right.

That's an extra. Do you have a ballpark figure?

Dr. Kiessling: Well, it really depends on what infertility clinic they are going to. As I said, I think the range for IVF is anywhere from $6,000 to $15,000, depending on the clinic.

Right. But what if they're doing the cup?

Dr. Kiessling: The cup procedure is much less expensive, and frequently covered by insurance. That's just a few hundred dollars for monitoring the blood hormones and doing ultrasound exams.

Is that something your clinic does?

Dr. Kiessling: We don't do it on location. We have a gynecologist right in the Boston area that helps us with that. Yes, we do do that here.

OK. Well, Christa, do you have any advice for negative women today who want to get pregnant with positive partners?

"I basically equated it, when we were going through it, as just any couple that was struggling to conceive. I wasn't so much thinking of us as an HIV-serodiscordant couple anymore, because what we were going through at that point was no different than what, I'm sure, millions of people do, in this country and around the world, trying to conceive a child every year."

Christa

Christa: I would just say to stay hopeful, and to do your research. And to definitely call Dr. Kiessling's facility, if possible. I mean, we did this five years ago. I'm sure now it's even easier, because there are a lot more facilities that are actually willing to work with couples in that situation.

Dr. Kiessling: Baby No. 62 was just born last week.

Christa: I personally know two people who have had success after us, through the recommendations of Dr. Kiessling, and then the different facilities. At the time, I couldn't find an iota, a shred of information even, on the Internet. It took forever. Now I personally know two other people. So it's really encouraging to me to know that it's getting easier. Because I don't want anybody to have to go through ... it was so devastating. It was like a death sentence -- not so much for my husband, but just that that was it. We had no hope for the future of having a family. And that's not the case. That's not the case.

So it was well worth all of the effort?

Christa: Absolutely. Absolutely. I mean, once the grunt work was over. You know, I basically equated it, when we were going through it, as just any couple that was struggling to conceive. I wasn't so much thinking of us as an HIV-serodiscordant couple anymore, because what we were going through at that point was no different than what, I'm sure, millions of people do, in this country and around the world, trying to conceive a child every year. I stopped thinking of us as a serodiscordant couple because I really wasn't worried about it at that point. I was really more just hoping that the procedure was successful.

Dr. Kiessling: I don't think we have any recent pictures, Christa.

Christa: Oh. I'll have to get some out to you. I will, I will.

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Copyright © 2007 Body Health Resources Corporation. All rights reserved. Podcast disclaimer.

This podcast is a part of the series This Month in HIV. To subscribe to this series, click here.


  

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