Guest Host: Susan Page

One in eight couples struggles with infertility. Some have medical problems, for others it’s age, and for some couples, the problem is never really identified. Major advances in fertility treatment in the last 30 years have helped many woman have children. But for those struggling with infertility, walking down the street or logging onto Facebook can be an emotionally fraught experience as they are come face to face with other people’s pregnancies and births. For those actively pursuing treatment, success doesn’t always come quickly, and sometimes it doesn’t come at all. Join Susan Page and her panel to discuss the trials and tribulations of assisted reproduction.

Guests

  • Richard Allen lawyer and writer
  • Barbara Collura executive director, RESOLVE - the National Infertility Association
  • Belle Boggs Author of "Mattaponi Queen" and the essay "The Art of Waiting," published in the March/April issue of Orion
  • Dr. Paul Gindoff Professor of Obstetrics & Gynecology at the George Washington University Medical Center and Director of The Fertility & IVF Center at The GW Medical Faculty Associates.

Program Highlights

Getting pregnant isn’t always easy. For some it can take months or years. Some turn to assisted reproductive technology at a financial cost that can run to thousands of dollars, but the emotional costs can be even higher.

Infertility Is Fairly Common

One in every eight couples of reproductive age experiences some difficulty with fertility, Collura said. That’s about 7.3 million Americans. Belle Boggs talked about her own experience with infertility, and she said she never thought it would happen to her. “You go through your life thinking that fertility and child rearing is a given,” she said. Dr. Gindoff said infertility can be a challenge emotionally and psychologically, not just physically.

Cost Is A Huge Hurdle

Depending on what state in which someone lives, the cost of treating infertility can be a huge burden. Some insurance companies don’t cover infertility treatments at all. “You don’t get charged for a cesarean section or for an emergency appendectomy,” Collura said. “No one has a 401K set aside for infertility treatments.” There are a few states that have state mandates that allow insurance coverage for infertility, but that’s less than 10 states, Collura said. Many couples end up spending thousands of dollars for each cycle – or chance to conceive – of IVF.

Having A Family Different From Having a Baby

Dr. Gindoff advises patients that their ultimate goal is usually having a family, which doesn’t necessarily have to mean getting pregnant. Other options, of course, may include adoption, surrogacy, etc. “The ultimate goal is having a family and it’s been sublimated into ‘getting pregnant,’ Gindoff said. “And getting pregnant has taken on a mystique and competition of its own, which leads itself to more stress and more psychological issues.”

You can read the full transcript here.

Transcript

  • 11:06:56

    MS. SUSAN PAGEThanks for joining us. I'm Susan Page of USA Today sitting in for Diane Rehm. Diane is away on a station visit. Getting pregnant isn't always easy. For some it can take months or years. Some turn to assisted reproductive technology at a financial cost that can run to thousands of dollars. The emotional costs can be even higher. To discuss the challenges of dealing with infertility, we're joined by Barbara Collura of the advocacy group Resolve, the National Infertility Association, Dr. Paul Gindoff of the Fertility and IVF Center at GW Medical Faculty Associates, and write Belle Boggs and her husband, Richard Allen. Welcome to "The Diane Rehm Show."

  • 11:07:37

    GROUPThank you.

  • 11:07:38

    MR. RICHARD ALLENGlad to be here.

  • 11:07:40

    PAGEWe're gonna invite our listeners to join our conversation later in this hour. Our toll-free number is 1-800-433-8850. Our email address, drshow@wamu.org, or find us un Facebook or Twitter. Well, Dr. Gindoff, let's start with defining what infertility is. How would you define it?

  • 11:07:58

    DR. PAUL GINDOFFThat's an excellent question. I mean, it's changed over the decades. If you look at a textbook, it will probably say something like 12 months of unprotected intercourse and no conception, but we have to qualify that for the age of the patient. So you can be 40 years of age and have infertility as a given simply it's age-related, and that would require when to seek advice, help, potentially treatment immediately.

  • 11:08:27

    PAGEAnd what if you're younger? What if you're 25 or 30?

  • 11:08:30

    GINDOFFWell, I think there's some simple explanations that the public would be aware of. For example, if somebody has a history of a low sperm count, a history in the family of fertility problems, a blocked tube for example from prior surgery, a history of endometriosis, infections of the tube, known problems that pretty much are on the radar of most people. That would require somebody to be triaged immediately to a subspecialist like myself, a reproductive endocrinologist.

  • 11:09:07

    PAGESo Barbara Collura, how common is the problem of infertility?

  • 11:09:11

    MS. BARBARA COLLURAIt's quite common. In fact, what we know is that one in eight couples of reproductive age experience infertility. That's very high, and very surprising for many people to know that it's that prevalent.

  • 11:09:24

    PAGENow, one out of eight, so how many people is that in the United States? Must be millions.

  • 11:09:29

    COLLURASo one in eight, it's 7.3 million Americans again of reproductive age who have experienced infertility.

  • 11:09:36

    PAGESo Richard Allen, how long have you and your wife been trying to have a child?

  • 11:09:40

    ALLENAlmost four years.

  • 11:09:42

    PAGEAnd when you started, did you assume it would be easy, no problem?

  • 11:09:46

    ALLENCertainly.

  • 11:09:48

    PAGEBut it hasn't turned out to be that way?

  • 11:09:51

    ALLENNo. It has been more complicated than that.

  • 11:09:54

    PAGESo Belle Boggs, I know you don't want to go into a lot of specifics, but talk to us generally about what your experience has been.

  • 11:10:02

    MS. BELLE BOGGSWell, when we planned, you know, what I write about in my essay, which I wrote for Orion magazine, and which is reprinted this month in Harpers, you don't ever expect that this will happen to you. You go through your life thinking that fertility and child rearing is a given. I think whether you plan to have children or not, I think it's -- I tend a Resolve support group, Richard and I both do, and every time there's a new person there, they always say that they're surprised to be there. So it wasn't something that that we expected.

  • 11:10:45

    MS. BELLE BOGGSI'm a teacher also, and I'm amazed. I've taught a lot of different ages, and I'm amazed by my students. We'll talk about the children that they'll have some day. They talk about what kind of parents they'll be, whether they'll be strict or lenient and how their children will behave, and it's just very interesting to me to think about it as a person and as a writer how important this is to your sense of self.

  • 11:11:14

    PAGEBelle's essay, if our listeners would like to read it, you can log onto our website at drshow.org, and we've provided a link to that. So Dr. Paul Gindoff, when couples come in and they're facing fertility problems, what are the big hurdles that they face, or how do they feel? I mean, do you find that most of your patients like Belle think I can't believe this is happening to me?

  • 11:11:37

    GINDOFFYes. To a certain extent, because we're dealing with young, healthy individuals, young, healthy women who are not used to any failure in their lives at this point, and there's expectations there as Belle is saying, that it's a God-given right to have children, and there is some kind of delay. It's a conception delay, which lets the couple think about the pros and cons of having children. I mean, it's a challenge emotionally and psychologically, not just physically.

  • 11:12:08

    GINDOFFAnd because there is time because of failed attempts in getting pregnant, there's a significant amount of ambivalence, which is normal, but it takes on a life of itself, and there's a real problem for the couple is keeping them focused and keeping the momentum going. It's real important to establish transparency in the diagnosis and in the prognosis so you can set up the right treatment options for the patient, because I find that burnout inertia in treatment is a major reason why people fail at getting pregnant.

  • 11:12:45

    GINDOFFThere's just not enough time to get the patient on the right treatment because of this, so the burden on the physician, the key to success is to make the appropriate choice at the appropriate time, and not everyone is ready when they enter the consultation room for that. You have to be very delicate, very sensitive to the couple, and give them the news, be transparent, but do it in a very, very sensitive way, because you don't want to aggravate the psychological situation that exists already, because the workup as well as the treatment will aggravate the problem. It's gonna increase the stress burden on the couple tremendously, and that's really the key for the couple is how can they deal with this extra stress.

  • 11:13:36

    PAGEAnd when you talk about transparency, you mean transparency in terms of likelihood that a procedure is going to succeed in a pregnancy?

  • 11:13:43

    GINDOFFOh, absolutely. We're actually -- physicians in general, the medical community still has to learn how to be direct with patients. It's difficult, it's sometimes hard to "break bad news," quote unquote, and though fertility is quote, "a happy field" in a sense, we still have bad news we can break to the patient. Very rarely you'll have a patient who will present where it's a hopeless situation. Over 90 percent of the couples we see, we can give them a good plan, a focused plan where we can help them.

  • 11:14:21

    GINDOFFIt's just a question of getting them on the same page. They may not be ready emotionally, psychologically for that, so you have to listen to the patient, that's the key. You have to spend time listening to the patient, finding out what they want to tell you, what their needs are, and customize, personalize the care and treatment to that couple.

  • 11:14:42

    PAGEBarbara?

  • 11:14:43

    BOGGSI couldn't agree more. In fact, what we know is that patients who are looking at in vitro fertilization, which is really one of the -- what we call the high-tech procedures, and what a lot of people also don't know is people with infertility, most resolve their infertility without doing IVF. In fact, what we know is that less than five percent of people with infertility actually do IVF, but to Dr. Gindoff's point, one of the top one or two reasons why patients don't continue with IVF is the psychological stress and burden that it has placed on them.

  • 11:15:19

    COLLURAIt is such an emotional diagnosis and then to have some kind of failure if you're going through this process can be devastating, but there's a lot of obviously very wonderful, happy stories as well that are the result of IVF.

  • 11:15:32

    PAGEOur phone lines are open. You can give us a call, 1-800-433-8850. Well, Richard, I wonder if this is maybe particularly difficult for men facing this situation because we know that woman are, as a group, maybe a little -- find it a little easier to talk about their feelings and their stresses. Is it harder do you think for men?

  • 11:15:50

    ALLENI would say from looking for instance on the Internet, I mean, you see many places where women congregate to discuss the trial and tribulations. They are more open about it, and I think the assumption is that the woman is sort of delegated to go out and find community and be the public face of every couple that is dealing with this, and there's an assumption that the, you know, in a straight couple, for instance, this is a problem that affects lots of people.

  • 11:16:28

    ALLENIn a heterosexual married couple, the man is going to want to not discuss this in public, and in our support group that we attend, it does appear that, you know, the men who attend find it a relief. It's something that they can discuss. A lot of them mention not being able to discuss it with their families, their brothers, their fathers.

  • 11:16:56

    PAGEBelle, you know, one of the interesting things in the essay that you wrote was you said that you keep drawing these lines, I'll do pills but not shots, and then okay, I'll do shots, but I'm not gonna...

  • 11:17:07

    BOGGSWell, I haven't done shots yet.

  • 11:17:09

    PAGEBut that the line keeps moving on what you are willing to do. Tell us about that feeling.

  • 11:17:16

    BOGGSWell, one of the reasons that I wanted to write this essay is because when I was much younger, before I even thought about when I would have children, I would have never thought that I would have considered IVF. I think when I was in my 20s I would have said, well, in my early 20s, I would have said, well, that's a wasteful use of resources. You should donate the money to a children's hospital or you should adopt, and as I've gotten older I realize how difficult adoption is, and then I also realize that this is such a personal thing, you can't imagine what you would do until it happens to you, and I think a lot of the people in our group have said the same thing that they thought they would do one thing and then they would try another and I really like what Dr. Gindoff and what Barbara were saying about the importance of communication with doctors.

  • 11:18:08

    BOGGSBut I also want to say that another factor for the people I know who are considering treatment is definitely the financial factor. Very few people have insurance to -- at least where I live in North Carolina, that covers IVF, and it's very difficult.

  • 11:18:28

    PAGEBelle Boggs, she's a writer, and we're also joined this hour by Richard Allen, her husband. Barbara Collura, executive director of Resolve, the National Infertility Association, and Dr. Paul Gindoff, he's a professor of obstetrics and gynecology at the George Washington University Medical Center. We're going to take a short break. When we come back we'll talk more about the costs, and we'll also take your calls. Stay with us.

  • 11:20:05

    PAGEWe're talking about the problems of infertility and, Paul Gindoff, you were talking about whether this issue of infertility is different in some ways from other medical problems you might be talking to patients about.

  • 11:20:18

    GINDOFFAbsolutely. Procreation is very personal and the process in managing this and treating this cannot be hidden. So this increases the exposure and susceptibility of the couple who are quite vulnerable during this time to the judgments of just about everyone they interact with. It makes for a difficult -- very difficult situation which is unique in medicine. Our strategies for treatment need to short circuit the process. So that's where if we have proper triage and management to offset this burnout and depression potential you can get right to effective success and prevent stagnation.

  • 11:21:07

    GINDOFFIn fact, when you choose treatment options, when you look at the cost of treatment options one has to really look at the -- and this is what I mean by transparency and expectation -- the pregnancy rates, the success rates for different options. A lower level treatment, for example, might cost less money but in the long run will not give you success. And you can end up spending a whole lot more, either the insurance company or the individual, and get nothing for it.

  • 11:21:39

    GINDOFFWhereas one in vitro fertilization cycle, let's say if the patient is triaged to that first, might be all that's necessary even though it is more costly for one cycle in the big picture of what we call cost effectiveness. It is actually cost effective. And medical studies have shown this to be in fact true.

  • 11:22:02

    PAGEWell, Barbara Collura, what kind of impact does the cost have do you think on the decisions of couples of what to do?

  • 11:22:08

    COLLURAIt's a huge factor. It's absolutely one of the top factors. You don't get charged for a cesarean section or for an emergency appendectomy. You don't have 10, 15, $20,000 sitting in your bank account ready to cover that medical crisis. With infertility no one plans for this. No one has a 401K set aside for their infertility treatments. We don't all grow up as little girls dreaming of having our babies be IVF. So this is not something you plan for and it affects people in two ways.

  • 11:22:41

    COLLURAOne, it's a barrier to access to care, meaning people don't even go for this kind of treatment because they cannot even start it. And secondly, if they do one IVF cycle and perhaps it fails they don't have enough money to do a second one. And most physicians will tell you plan on two to three IVF cycles for that take-home baby. So it's a huge, huge factor for patients.

  • 11:23:05

    PAGEAnd does any kind of insurance cover it? Are some people covered by insurance?

  • 11:23:09

    COLLURAThere are a few states that have state mandates that the state legislatures have mandated insurance coverage for infertility. There are just -- there's less than ten states that have really good mandates. And then a lot of employers voluntarily choose to offer it for their employees, which is fantastic. But it's still huge barriers, which is why an organization like RESOLVE, we advocate constantly for ways that people can afford coverage and get access.

  • 11:23:39

    PAGEBelle, we've mentioned the essay that you've written. I wonder if you'd read us just a very short excerpt from that.

  • 11:23:44

    BOGGSSure, thank you. In the clinics, they call what the doctors and lab technicians do ART, Assisted Reproductive Technology. Softening the idea of the test tube baby, the lab created human, ART is something human, social, nonthreatening. ART does not clone or copy but creates. It is often described as priceless, timeless, healing. It is far from uncommon to spend large amounts of money on ART. It's an investment. All of these ideas soothe whether we think them through or not just as the experience of treating infertility while often painful and undignified soothes as well.

  • 11:24:23

    BOGGSFor the woman, treating infertility is about nurturing her body which will hopefully produce eggs and a rich uterine lining where a fertilized egg could implant. All of the actions she might take in a given month abstaining from caffeine and alcohol, taking Clomid or Femara, injecting herself with (word?) or human chorionic gonadotrophin, charting her temperature and cervical mucus on a specialized calendar are essentially maternal, repetitive and self sacrificing.

  • 11:24:51

    BOGGSIn online message boards where women gather to talk about this clumed cycles and inseminations and IVF cycles a form of baby talk is used to discuss the organs and cells of the reproductive process. Ovarian follicles are follies. Embryos are embies. And frozen embryos, the embryos not used in an IVF cycle which are frozen for future tries are snow babies. The frequent ultrasounds given to women in a treatment cycle which monitor the growth of follicles and the endometrial lining are not unlike the ultrasounds of pregnant women in the early stages of pregnancy. There is a wand, a screen and something growing and always something more to do, something else to try.

  • 11:25:38

    PAGEThat was writer Belle Boggs with the essay that she's written for Orion Magazine. There's a link to this full essay on our website. Richard Allen, we've heard Dr. Gindoff talk about the problem of burnout with a lot of couples. And I wonder if that was something that you have faced as well.

  • 11:25:55

    ALLENI'm not sure I would characterize it as burnout, but medicalization of something which, for most people, does not involve medical treatment is stressful and it's time consuming. And it certainly is the case that you have to step away from it. Occasionally, you have to take a break from treatment if it's not successful, whatever the treatment might be. And it is a relief when you get out of that mode of stress and constant thinking about fertility.

  • 11:26:32

    PAGESo are you taking a break now yourself?

  • 11:26:34

    ALLENI suppose so.

  • 11:26:36

    BOGGSYeah, I would say that I burned out rather than Richard and probably for some of the reasons Dr. Gindoff was talking about. We pursued probably some of the less effective treatments for a while because it seemed like they were going to work. And I took a medication for -- just an oral medication for about ten months and I would imagine that Dr. Gindoff would think that was probably too long not to move on to something else. And it had some side effects that were really difficult for me, mostly emotional side effects.

  • 11:27:09

    BOGGSAnd so right now, we're not pursuing any particular treatment because of that the space that opened up of, you know, kind of a space of ambivalence. And it's been very interesting actually to have the time open up and then to think and consider because while this is something that we want very much, we also have a great life. You know, we have a great marriage, we have great families and we have careers that we care a lot -- you know, that we really care about. So having the space to consider is actually very interesting to think, well what are you going to do? And when are you going to do it? So...

  • 11:27:50

    PAGEAnd do you know if you'll go back to seek more treatment?

  • 11:27:53

    BOGGSWe really don't know.

  • 11:27:55

    PAGEDr. Gindoff.

  • 11:27:56

    GINDOFFI really agree with you and I just want to be clear that the burnout to a large extent is iatrogenic. Iatrogenic is...

  • 11:28:07

    PAGEI don't know what that means.

  • 11:28:09

    GINDOFFExactly. Iatrogenic is a dirty word in medicine. It means induce by the physician. And I think to underscore what you also said is that if a patient is triaged to the wrong treatment it's a dead end. You're going to be on a treadmill. You're destined for failure. It's really the doctor's job. He or she is the expert in figuring out what is going to work, short circuiting the process, the straight line from point A to B.

  • 11:28:42

    GINDOFFNow you have to let the patient adjust to that. You can't force, of course, anyone to do anything but it's part of the art of medicine to help the patient or the couple get to terms with the process. And yeah, I think it's -- you know, for a while you may need to do low level treatments, inseminations, Clomid, natural cycle inseminations, whatever. And they may work but at some point you have to say let's move on. You can't let people stagnate. I think that's really important. You know, we finally developed a strategy in this field that works. The question is, is society ready for it.

  • 11:29:23

    GINDOFFI mean, insurance coverage, acceptance by mainstream America, that still may be lagging. You know, my work is almost like a science of magic. I work with the patient in front of a "curtain" behind which is an Emerald City also known as the IVF lab. And full treatment can be transformational and affect generations. But, you know, there's a paradox because as medical technology has improved and it seems simplified from the physician's point of view in terms of triage, I think that the public looks at it as being more complex.

  • 11:30:02

    GINDOFFSo it's our job to get the message out and let the patient and the couple take their time but not too much time. There has to be shepherding involved, mentoring involved, communication, transparency. And that's what I mean about this process...

  • 11:30:21

    PAGEWe have -- yes, great. I didn't mean to cut you off. We have a lot of callers who've had experience in this field. Let's go to Andrea. She's calling us from Cincinnati, Ohio. Andrea, thank you so much for joining us on "The Diane Rehm Show."

  • 11:30:34

    ANDREAHi. Well, my husband and I, we got married actually it's almost 11 years now and we started trying right away. I was diagnosed with PCOS which is the polycystic ovarian syndrome. And my husband has a low count. And you can hear in the back we've actually got twins now. But first we adopted. Both boys came to us from the states. And I never, ever, ever, thought I would say this but I am so incredibly grateful for my infertility, which sounds like I need to be committed. I really am because without it we wouldn't have our boys.

  • 11:31:22

    ANDREAAnd we ended up doing a cycle of IVF with (word?) which is where they actually put the sperm in the egg. And we have twin girls that are almost nine months old. But it was difficult. I mean, there were tears, you know, through a lot of the fertility stuff that we did before we adopted the boys. And it's not something I'd wish on anybody but I guess I want to say that there is a light at the end of the tunnel regardless of which road you go down.

  • 11:32:02

    ANDREAI try to take care of myself. Like I allowed myself to say, you know what? I'm not going to go to that baby shower or -- I wasn't rude but I also made sure to take care of myself. If, you know, someone was announcing a pregnancy or, you know, complaining about pregnancy symptoms, you know, I, like I said, wasn't rude but I was, you know, well I would really love to be in your shoes or something like that. So anyway I just wanted to call and maybe give a little hope I guess 'cause we've got a family of four now and a minivan that we have to drive if we want to go anywhere as a family. So...

  • 11:32:42

    PAGEAndrea, such a great call. Congratulations on your family.

  • 11:32:46

    ANDREAThank you.

  • 11:32:46

    PAGEWhy was it hard, do you think, to move toward the decision of adoption?

  • 11:32:51

    ANDREAIt wasn't actually. We tried for -- I think we had like three cycles of the artificial insemination. And the burnout that you guys were talking about that it's like a physical -- your candle is snuffed. I mean, I couldn't do it anymore. I couldn't do it to my body. I couldn't do it to my marriage after a while. And I think everybody has those -- you hear of people going for, you know, ten years straight of trying. And you hear of people who've tried one thing and have decided, no this isn't going to do it.

  • 11:33:25

    ANDREABut our adoptions were actually really amazing. I would totally recommend adoption or IVF. But, I mean, we have an open adoption with one of our sons' birth families to like the point where he was ring bearer in his birth mother's wedding. So we really lucked out. We really, really lucked out. But there is a light at the end of the tunnel. It doesn't always necessarily end up with -- result in biological children or children at all, but this -- I guess my word, my suggestion would be to take care of yourself because (unintelligible) ...

  • 11:34:09

    PAGEYeah, Andrea, thank you so much for your call. So much to think about. I'm Susan Page and you're listening to "The Diane Rehm Show." Barbara, it looked like you wanted to respond to several of the things that Andrea said.

  • 11:34:20

    COLLURAWell, it is a personal journey. Every single person that goes through infertility has to figure out their own path and their way to build their family. But I think it's really important for people to understand and appreciate how emotionally draining this diagnosis is. You know, when you're diagnosed with cancer, you're diagnosed with something else what do you do? You seek the support of your family, of your friends. You tell people. You start building that support network.

  • 11:34:46

    COLLURAWhen you're diagnosed with infertility, you silence yourself. You feel stigmatized, you feel alone. You don't talk about it. And that's partly why what we try and do in this infertility community is to tell people you're not alone, seek out that help and support, get connected with others, whether that's online or in person. But treat it with the seriousness that it deserves. And that's what we don't see. People think, I can handle this, I can do this. I'm all alone, but no problem. And then they find themselves at an emotional dead end and it is heartbreaking.

  • 11:35:23

    COLLURAAnd so if you treat it with the seriousness that it deserves right from the start, you're going to be at a much better place and probably make better decisions and in a quicker timeframe.

  • 11:35:32

    PAGEBelle.

  • 11:35:33

    BOGGSYeah, I agree with Barbara. I mean, and I definitely give my congratulations to Andrea. It sounds like she has a wonderful family. Part of the difficult thing about being infertile is that you're experiencing infertility in a largely fertile world. And it's not just human fertility, but animal fertility too is all around us in the spring. When I started writing my essay it was last spring. And the cicadas who'd returned from their 13-year burrowing underground, they were reproducing and they were deafeningly loud. And the bald eagles were raising their eaglettes and, you know, the baby ducks were on the river. And there's just this sense that this is what -- this is life and this is what nature is about.

  • 11:36:17

    BOGGSBut I think I do agree with Andrea the caller that there is a light at the end of the tunnel I think for everyone. And I agree with her that it might not be children. It might be something else.

  • 11:36:29

    PAGEYou know, it was heartbreaking though. Our anguish to hear her talk about while she's seeking children where she doesn't know what the future's going to hold, trying to not get discouraged about other people's baby showers.

  • 11:36:45

    BOGGSOh, I don't go to baby showers either. And, you know, I don't feel bad about that. And, I mean, I wish my friends all the best and I think that -- and I -- you know, and I love hanging out with babies and children. And part of my life -- I'm a teacher. I teach at the Hawbridge School, an environmental charter school in North Carolina. And I love my students and I love being around children. I always have, but there are -- I agree, you have to protect yourself and you have to know what your limits are.

  • 11:37:12

    PAGEYes, Dr. Gindoff.

  • 11:37:14

    GINDOFFI think a couple things that people can help themselves with. One is keeping focus on the goal. And the goal is having a family. And that's different than getting pregnant. The ultimate goal is having a family and it's been sublimated into "getting pregnant." And getting pregnant has taken on a mystique and competition of its own, which leads itself to more stress and more psychological issues.

  • 11:37:44

    PAGEWe're going to take another short break and when we come back, we'll go back to the phones and take some more of your calls. Stay with us.

  • 11:40:02

    PAGEWelcome back. I'm Susan Page of USA Today, sitting in for Diane Rehm. With me in the studio this hour, Barbara Collura of Resolve, the National Infertility Association. Dr. Paul Gindoff from George Washington University Medical Center. Belle Boggs, a writer and her husband Richard Allen who's a lawyer. We've got a series of emails and Twitter postings that I'd like to just touch on briefly. Here's a -- a listener posted this on our website. "I ended the process feeling like a biological failure and I still have no real closure."

  • 11:40:33

    PAGEMelissa sent us an email saying "The dichotomy between the cost and the emotion is great. I would keep trying via procedures until I achieve success, however my resources do not allow it. My husband would be willing to spend a bit if we were able to have a guarantee of success but no one can give us that. It's frustrating." In another listener emails, "I think one thing people don't realize about infertility is how often it is accompanied by loss and grief, even for couples dealing with infertility who have not suffered a loss. With each negative pregnancy test, I felt like we had lost something." Really, Barbara, such compelling stories here.

  • 11:41:09

    COLLURAIt is and this is why infertility, on many levels, one of the most unique medical conditions in that it carries this huge emotional and psychological burden. And this is why, I think, connecting with others and getting support is so critically important. There are mental health professionals, believe it or not, who special in infertility. They are incredibly helpful. RESOLVE has support groups all over the country. There's online resources, but that's what you really, really need. And look at some of those callers are talking about this cost issue again. And this is a huge issue.

  • 11:41:43

    COLLURAWhen you talk to couples, they will tell you that this was one of the huge problems with the male and the female, where they were in the process, how much money they were spending. And women will say, how can you put a price on being a parent? And it becomes even more difficult. And this is why people need to advocate and people need to talk about this and we have to change public policy about this so this is not the financial burden that we constantly hear about.

  • 11:42:10

    PAGEAnd what public policy would you change?

  • 11:42:12

    COLLURAWell, first of all, we would love to see this covered by medical insurance. It's a medical condition, it should be covered by insurance. Short of that, we're advocating right now for a bill in Congress called the Family Act. It's unique in that it creates a tax credit to cover those out of pocket costs for IVF. There's already an adoption tax credit, so it's very, very similar in many ways to that. And we look at this as a way to lessen the burden, but ultimately, insurance coverage would be the ultimate way to help everyone.

  • 11:42:43

    PAGELet's go to Donna, she's calling us from Austin, Texas. Donna, hi, you're on the air.

  • 11:42:48

    DONNAHi, thank you for taking my call.

  • 11:42:50

    PAGEYes, of course.

  • 11:42:52

    DONNAYeah, you know, I was calling about what your guest was just speaking about. I think that a lot of people in the general public who are fertile, honestly, have no real understanding of the exorbitant costs of infertility treatment or the fact that many, if not most, insurance companies provide absolutely zero coverage for infertility. You know, and we're not talking about $5 or $10,000, we're talking about $8 to $10,000 just for the drugs, for a single IVF cycle. And then another $15,000, you know, for the technology itself. So I think she mentioned earlier that you should expect two to three cycles of IVF in order to take home a baby. Well, let's think about that.

  • 11:43:35

    DONNAThat's, you know, $20 to $25,000, three times and then the reality is that a lot of people who undergo IVF never take home a baby. You know, it's not just a matter of money for a baby. As somebody said, write me a check for $50,000, I guarantee you'll take a baby home, I don't think -- I think that a lot of people might think, gee, I can come up with that. But when you say to somebody, give me $50,000 and maybe you'll take home a baby. It's a little like going to Vegas. You know, and there's absolutely no support from your insurance company. The general public doesn't seem to have a lot of compassion for the expenses associated with infertility treatment. I don't know if we're just not there yet in terms of insurance coverage.

  • 11:44:21

    PAGEDonna, thanks so much for your call. Dr. Gindoff, tell us about success rates. Because one of the frustrations Donna was talking about was investing all this money with no guarantee of what will happen.

  • 11:44:33

    GINDOFFYes. Well, success rates are sort of a mixed bag, if you will, because it really depends on the entry criteria for the patients, where their age may be a little older, their ovarian reserve may be compromised and they won't respond well to fertility drugs. There may be a severe malefactor. There may be some genetic issues where they're have increased risk of miscarriages or failed implantation because of what we call Aneuploidy, which is abnormal chromosomes in the embryo. One size doesn't fit all, pretty much. And there is an average of averages which is about 25 percent as the pregnancy rate regardless of all these other entry criteria or factors.

  • 11:45:24

    GINDOFFThe point is that, it's very true that when one embarks on this pathway, one has to have the right expectation. If you got pregnant on the first cycle, that's phenomenal, wonderful. But the average is that you won't. And because of the constraints of insurance and the financial burden, it does average down to around 2.3 cycles per individual in the United States. And interestingly, if you look at mandated states in the United States, that average is going to be closer to four. So clearly the financial impact tremendously. But as a reaction to the financial burden, the physicians have listened and have come up with innovative alternative treatments to the standard IVF which uses high dose medications which are very costly.

  • 11:46:17

    GINDOFFOne is natural cycle in vitro fertilization which is a mechanism where you don't use fertility drugs or use very, very little fertility drugs. So that's cutting the cost down significantly, a fraction, a third or even less of the cost of a typical IVF cycle. The real fundamental here is that a natural cycle IVF can't be used for just anyone. You have to have the right prognosis to customize that. But there are plenty of women, particularly younger women, under 35, where this would be a great opportunity.

  • 11:46:54

    PAGEYou said the success rate was 25 percent? What does that mean?

  • 11:46:57

    GINDOFFThat's one in four patients that begin a cycle will end up being pregnant. And I'll admit that statistics are very much like a casino and they can be manipulated and presented various different ways. And if you really drill down to what you want which is not getting pregnant but having a baby, it's lower than 25 percent because you have to subtract off the miscarriage rate which is 25 percent of the 25 percent, let's say. So you're knocking down to about 20 percent delivery rate.

  • 11:47:31

    PAGEBarbara.

  • 11:47:32

    COLLURAThe 2010 data that the Centers for Disease Control collects from fertility clinics around the country shows, and this is the most current data we have, that if you're under 35, 42 percent of women who did IVF have a life birth but, listen to this, if you're 38 to 40 it drops down to 22 percent and if you're 41 to 42, 12 percent. So again, that's looking at the percentage of women of that age bracket who had a live birth from a IVF cycle.

  • 11:48:02

    GINDOFFYou really have to be transparent about these numbers. Not to mislead anyone and like I said prior, the age of the patient, the ovarian reserve, that all factors in to get these subgroups.

  • 11:48:15

    PAGEI wonder, Belle and Richard, if you think that your doctors were pretty transparent about the possibilities of success on the things that you've tried.

  • 11:48:24

    BOGGSI do. I mean, I think a large part of our -- the fact that we haven't conceived yet, probably comes from just our own ambivalence and spending our wheels and not being sure what to do. I feel like we had very good treatment that was open and honest, once we got to our reproductive endocrinologist. I think we spent too much time with our -- with my OB-GYN before moving onto a reproductive endocrinologist. And so I would encourage anyone who was wondering or thinking about going to an R.E. that that's a better place to start. I think we had more specialized care once we got there. And I think our doctors been -- I think he has said a lot of the same things that Dr. Gindoff has said. I don't know if Richard agrees.

  • 11:49:10

    ALLENDr. Gindoff said earlier that, he made references to triage and I think he was talking about the necessity of selecting the correct treatment early and pushing a patient toward the treatment that was likely to give them the highest odds of success. But in many people's -- for many patients, that may very well be IVF but that still doesn't mean that psychologically, you can make that decision, especially in the face of IVF being the highest cost treatment option. And it's still involving enormous stress and time investment. It would very much be like going to the casino and making a $25,000 bet. That's something, many people cannot do psychologically, especially when you're talking about 25 percent odds of success.

  • 11:50:02

    GINDOFFWell, the couple needs to be ready, both in desire and comfort with the level of technology. I think customization or personalization of treatment options is essential. And it's the duty of the physician to keep momentum going and making sure that there's no stagnation and burn out.

  • 11:50:22

    ALLENRight, but...

  • 11:50:22

    GINDOFFAnd there's a very thin line you have to walk on, this tight rope, between you know shepherding the patient through this. Many times we support patients by their choice but we do set limits. And we have statistics to back that up. We have life table analysis of many treatments, where for example, after six treatment cycles of just about anything, there's no further gain, no further pregnancy. So for anyone to be on a treatment for more than six cycles, whether be clomid, IUI, et cetera, is really not appropriate. And I think that many physicians and units don't manage the patients well in this regard. So that gets back to the (word?) issue about the burnout. I mean, we all have to work together and be open about it.

  • 11:51:22

    PAGELet's talk to Ben, he's calling us from Battle Creek, Mich. Ben, thank you so much for joining us.

  • 11:51:29

    BENYou're welcome. I just had a question. I wanted to see where, in all of this, where like sperm donors or egg donors or surrogates fall into this both as, I don't know, about legalities or costs and/or where that fits in emotionally for people?

  • 11:51:45

    PAGEAll right. Ben, thanks for your call, Barbara?

  • 11:51:47

    COLLURAWell, we call those third-party reproduction and depending upon the diagnosis of both the male and the female, that might be something that they jump right into at the beginning of their process. If it's a malefactor that they can't find or get any sperm, then a sperm donor is going to be the option. What you're looking at with the third party reproduction, where you're using donated egg, sperm, embryo or perhaps you are using a gestational carrier to carry that pregnancy, you're going to be looking at, obviously, at a cost and more complex processes.

  • 11:52:18

    COLLURAYou're probably going to have to get legal counsel, there's some psychological requirements in those types of procedures. And you're going to have to think about what is it -- our goal? Kind of like what we've heard all day on this show, what is the goal at the end of the day? And those are all very important considerations when you're looking at third party reproduction.

  • 11:52:35

    PAGEI'm Susan Page and you're listening to "The Diane Rehm Show." Let's try to get another caller in. We'll go to Salt Lake City, Utah. Cara, hi, you're on the air.

  • 11:52:44

    CARAHi, thank you for having me. I am interested in getting the panels impression. I'm a high risk obstetrician here in Salt Lake City. And I appreciate the discussion about transparency with your patients about pregnancy success rates. However it's been my impression that when patients come to me with what is sometimes ends up being a very high risk pregnancy, higher order multiples or pregnancy in women with underlying medical conditions, that they don't seem to have a good understanding, much beyond the first trimester of what risks that pregnancy entails. Not only to their fetuses with early delivery and preterm birth, but also to themselves.

  • 11:53:25

    CARAThat it seems that patients either haven't been counseled about this or haven't been able to hear that. And I'm interested to know from the doctor, do you discuss that with your patients or do you send them for preconception counseling with a maternal field medicine specialist. And from the patient, were you counseled about that and did that impact your decision making in anyway?

  • 11:53:45

    PAGERight, Cara, thank you so much for your call and thanks for the very important work you do. Belle, what do you think?

  • 11:53:51

    BOGGSWell, I think that this gets back to what Barbara is saying about insurance and coverage. I think that if we had insurance coverage and people didn't feel so pushed into make the decisions that some people feel pushed into making, I don't think that we would see as many higher order multiples. I've never been an IVF patient so I've never been counseled about any of these things. And I think that we go to a very ethical university clinic that does not transfer, you know, multiple, many embryo's. But if you look in other countries where IVF is paid for, for a couple of cycles, you have a lot of single embryo transfer and you have very little in this country. If you look at the SART data online, there's very, very little single embryo transfer which is the safest kind of embryo transfer.

  • 11:54:46

    PAGEBecause couples want to maximize that the odds that it's going to work, so you then you run the risk or the opportunity of multiple births.

  • 11:54:53

    BOGGSBecause they can't afford to do it multiple times.

  • 11:54:56

    COLLURAAnd we at RESOLVE, we hear from reproductive endocrinologists that many, many patients are coming in right at the get go saying, I want twins. I want twins, I'm here for twins. And we are all trying, in this community, to educate patients better about those risks because even twins carry risks. And so we hear this often from the maternal fetal medicine high risk docs and really, the single embryo transfer is going to be the best and safest.

  • 11:55:21

    PAGEYou know, Barbara, I know that you faced your own fertility issues and eventually went to adoption. Was that a hard decision for you?

  • 11:55:28

    COLLURAWas a very hard decision despite the fact that my husband and I were very open to adoption and the concept of adoption, that loss of that biological link, that loss of pregnancy and going through labor and delivery, I actually saw a mental health professional for over a year to deal with that. And the big turning point for us, was when we dealt with that loss and that the motions that came with that, which was huge.

  • 11:55:54

    COLLURABut then focusing on what is our goal and as Dr. Gindoff said, for us, my husband and I looked at each other and we realized we wanted to be parents. And that then led us to a path of adoption when treatment had failed for us and that whole loss had been dealt with. But again, treat it seriously. It took us a year of a lot of therapy to get through that loss.

  • 11:56:17

    PAGEAnd Belle and Richard, we have just a little bit of time left. I know you're taking a break from fertility treatments. Are you thinking about adoption?

  • 11:56:23

    BOGGSWe have thought about adoption and have talked about adoption and have been to adoption professionals in our area. And right now we're just kind of taking a break from, I mean, from everything. And I think it's been good for us to do that. And, you know, I'm interested in writing more about this topic. And, you know, we'll kind of see where we are later in the year.

  • 11:56:50

    PAGEBelle Boggs and Richard Allen, thanks so much for joining us and telling your story. Barbara Collura, executive director of RESOLVE. And Dr. Paul Gindoff, professor of obstetrics and gynecology at the George Washington University Medical Center. Thank you all for joining us this hour.

  • 11:57:05

    COLLURAThank you.

  • 11:57:06

    BOGGSThank you.

  • 11:57:06

    GINDOFFThank you.

  • 11:57:06

    ALLENYes.

  • 11:57:07

    PAGEI'm Susan Page of USA Today, sitting in for Diane Rehm. Thanks for listening.

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