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Jun 3, 2017

Misconceptions

Co-produced with PRX Logo

The world’s first “test tube baby” turns 40 next year. As she’s grown up, so has the medical specialty that produced her: in vitro fertilization. It’s a big business addressing a big demand.

On this episode of Reveal, we examine the stakes – and high costs – of IVF.

Malissa and David Pineda offer one searing example. Reveal’s Bernice Yeung and reporter Jonathan Jones follow the Pinedas’ story as part of a larger investigation into America’s $3 billion IVF industry. Malissa went to a doctor seeking fertility treatments. She wound up lying on an exam bed as she felt the doctor using an instrument to scrape the interior of her uterus. How could that happen?

Yeung and Jones try to find out more from – and about – that physician: Dr. Rifaat Salem. His clinic advertises some of the highest success rates in the nation, based on data the federal government collects from clinics. That information is supposed to help guide would-be parents through the complicated, expensive and emotionally volatile process of assisted fertility. The reporters discover how doctors can interpret success rates to mislead and manipulate customers.

The pursuit of high success rates in the fertility business can also lead doctors to implant more than one embryo at a time, even if there’s no good reason to – sometimes without explaining to patients how that practice puts mothers and babies at risk.

After months of trying to meet Salem for an interview, Yeung and Jones arrive at his main clinic in the Los Angeles area. It turns out that he tells a different story than the Pinedas. While he acknowledges that a mistake was made, Salem insists that Malissa should have returned to him for one more round of IVF.

DIG DEEPER

  • Read: When pregnancy dreams become IVF nightmares
  • Watch: Is egg donation safe?
  • More: 3 ways to address the problems with IVF

Credits

Support for Reveal is provided by The Reva and David Logan Foundation, the Ford Foundation, the John D. and Catherine T. MacArthur Foundation and Mary and Steven Swig.

Transcript

Reveal transcripts are produced by a third-party transcription service and may contain errors. Please be aware that the official record for Reveal's radio stories is the audio.

 

  Section 1 of 5          [00:00:00 - 00:10:04]
(NOTE: speaker names may be different in each section)

 

Host Al Letson: Hey folks, this is Al Letson and before we get started on today's show I wanted to tell you about an experiment that we're doing that will give you a little something extra while you're listening. So, here's how it works. Throughout the show, I'll let you know when there's extra stuff you can see while you're listening. It'll be photos of people you're hearing, a chart that explains some of the data in the story, a link that you can click on. You get the idea. Try it now. To get started, text 'hey Al' at 202-8REVEAL. That's 202-873-8325. Again, that's 202-873-8325. You will get a really pretty picture. Listen for more queues throughout this episode and we'll send you more stuff.

 

[00:00:30] Now, let's get started with the show.

 

From the Center for Investigative Reporting and PRX, this is Reveal. I'm Al Letson.

 

 

[00:01:01]

Making babies. Either it's not on your mind right now, or it's all you think about. Melissa Pineda and her husband, David, have spent a lot of time thinking about it.

 

[00:01:00]

Melissa:

 

All we wanted was to hear we were pregnant.

 

Host Al Letson: The Pinedas live in southern California, an epicenter of the baby-making business. It has one of the highest concentration of fertility clinics anywhere. Melissa and David grew up near the port of Long Beach, where she's a union longshore worker, and these days, he's a stay at home parent. They got together years ago in a whirlwind romance.

 

Melissa: Well, we knew each other growing up as teenagers, but we never dated. And then we ran into each other at work and eight weeks later we were married.

 

[00:01:30]

Host Al Letson:

 

They're a cute couple. You can see a photo of them by texting the word "parents" to 202-873-8325, that's 202-873-8325.

 

[00:02:00] So, after Melissa and David got married, they started raising their children from previous relationships together.

 

David: We have these kids, and all of our time and attention, our whole lives are directed at them.

 

Host Al Letson: But they hoped their family could grow.

 

Melissa: From the beginning we really loved each other and felt like we've been blessed. And we were a good team, we were a really good team, and we wanted more babies.

 

Host Al Letson: But they needed help. So, like many would-be parents, they looked to fertility doctors to make their dreams come true, even though David admits he felt conflicted and anxious about getting medical help.

 

David: There's so much more to it than just, oh, we woke up one day and said,"let's have a baby."

 

[00:02:30]

Host Al Letson:

 

Melissa had some experience with in vitro fertilization, known as IVF. When she was 34, she went to a clinic a friend had recommended, the Pacific Reproductive Center, run by Dr. Rifaat Salem.

 

Melissa: He made it seem like having a baby was going to be an automatic, I would never have to think twice or worry because of my age and my health was good and everything would be fine.

 

Host Al Letson: So Melissa signed up with Dr. Salem and started taking fertility drugs and hormones, sometimes by giving herself painful injections.

 

[00:03:00]

Melissa:

 

It's thick, it's oil, and you have to push it through and you feel it going in. But you alternate your sides and it's all joyous because you know this is how you're gonna have a baby.

 

Host Al Letson: That first time, Melissa had a baby, just as Dr. Salem predicted she would. So four years later, she returned to his clinic as a satisfied customer, hoping for another child.

 

Melissa: I don't want to be the best longshoreman, I don't want to be the best friend, I want to be the best wife and the best mom. That's what I want to be. That's who I've always wanted to be.

 

[00:03:30]

Host Al Letson:

 

She felt ready for the routine. Hormone drugs, eggs removed, fertilization, embryos transferred from a Petri dish into her woom. When Melissa got home from the clinic, she curled up on the couch, surrounded with comfort food.

 

Melissa: Beans, bean and cheese burritos, macaroni and cheese, eggs, everything delicious and good and that makes me happy and feel good. And we were all excited to have a baby, you know. All the family.

 

[00:04:00]

Host Al Letson:

 

She was nesting there, willing the embryos to take hold when her cell phone rang two days later, mid-morning on a Sunday. Melissa recognized the number right away. It was Dr. Salem.

 

Melissa: I answer it and he says,"Melissa, Melissa," and I said,"Dr. Salem?" And he said,"Yes, I need you to come into the office," and I said,"I can't my husband's not home. I'm on bedrest." And he said,"Well, call your husband and have him bring you in. This is my cell phone number, call me when you get here."

 

[00:04:30]

Host Al Letson:

 

Melissa called David. They drove together to the clinic. The parking lot, with room for 50 cars, was almost empty. When they went inside, Melissa says Dr. Salem wanted to examine her. A nurse named Kate took her to a patient room where Melissa lay on an exam bed. Melissa describes what happened next. The details aren't easy to hear.

 

[00:05:00]

Melissa:

 

He comes in, and he sits down on a rolly chair and I could see his bald head between my legs and I felt a speculum go in there, like a Pap smear, you know. And then all of a sudden it hurts really bad and I hold on and I can feel myself tightening and holding on, and Kate's holding my shoulder and she's like,"Don't move, don't move, you're doing good, you're doing good."

 

[00:05:30]

Host Al Letson:

 

But Melissa didn't feel like things were going well at all.

 

Melissa: It's hurting, it's burning, it felt like he was- you know like when you scrape a pumpkin, when you clean out the inside of a pumpkin and you just keep scraping the inside and then you can feel like the outside of the thing, you feel it getting weaker. And my pelvis was rising. And I can feel him scraping me. It hurt. And all I could say was the ABCs and the Hail Mary. Over and over and over again. Over and over and over again. And then he stood up, and he walked out.

 

[00:06:00]

Host Al Letson:

 

The nurse kept comforting Melissa.

 

Melissa: And I started crying, and I looked at her and I said,"Did he just give me an abortion?" And she said,"You're so strong, you're so strong." And then she unstrapped me from the table and I was on the gurney and I was crying. And everything changed because I knew something bad happened.

 

[00:06:30]

Host Al Letson:

 

Melissa didn't know exactly what happened, but she knew that what Dr. Salem had done ensured she wouldn't be pregnant. How did things go so wrong? Reveal's Bernice Yeung and reporter Johnathan Jones looked into this case as a part of a larger investigation into America's $3 billion in vitro fertilization industry. IVF clinics promise would-be parents a lot, and deliver 65,000 babies a year. But IVF fails way more often than it succeeds. Do prospective parents even realize that? Bernice and Johnathan dig into this growing business that sells hope to people at one of the most vulnerable times in their lives. They begin by trying to understand the doctor that Melissa visited, Rifaat Salem.

 

[00:07:30]

Johnathan Jones:

 

Yeah, hi, my name is Johnathan Jones, I'm calling from Reveal, I'm trying to get in touch with Dr. Salem?

 

Bernice Yeung: We didn't reach him that time, but we kept trying. In the meantime, we learned about Dr. Salem in other ways.

 

Johnathan Jones: I think what this is the- room 112, which is the records office, so let's go in here.

 

Bernice Yeung: Johnathan and I went to the county courthouse in downtown Las Angeles.

 

Johnathan Jones: So let's put in Salem first, Salem's name and see what comes up in the computer for cases. Okay.

 

[00:08:00]

Bernice Yeung:

 

Wow.

 

Johnathan Jones: Okay, here ...

 

Bernice Yeung: Quite a number of cases there.

 

We found that ten patients had filed medical malpractice cases against Dr. Salem or his clinic, the Pacific Reproductive Center. He won one, lost one, and settled three.

 

Johnathan Jones: We also looked at how his clinic stacked up against others. Every year, the Centers for Disease Control and Prevention collects and publishes success rates. We learned that Dr. Salem's numbers are really high. He plays this up in advertising, on his clinic website, and in this promotional video.

 

[00:08:30]

Dr. Salem:

 

I think we've produced a good result here. If you look at our statistics compared to the rest of the clinic, I think our statistics stand tall.

 

Johnathan Jones: They stand way out. Dr. Salem has helped a lot of women have babies. His success rates are, in some cases, double the national average.

 

Bernice Yeung: But he emphasizes one CDC calculation over others. Most fertility doctors do the same. It's based on when a clinic harvests an egg from a patient, fertilizes it, and then transfers a fresh embryo, usually three to five days later, and the women ends up delivering a baby. If you're a woman looking for a fertility clinic, Dr. Salem's statistics sound pretty good. But, are they the best way to choose where to go for treatment?

 

[00:09:00]

Johnathan Jones:

 

It turns out, these success rates are pretty much the most complicated thing ever. We wanted to get a handle on them, so I talked to Dr. Vitally Kushner, a fertility doctor based in New York. A few years back, Dr. Kushner and his colleagues looked into success rates. He says fertility clinics can game the system.

 

[00:09:30]

Dr. Kushner:

 

The problem is the methodology that's used to calculate those success rates ... in that they allow certain things to be excluded from statistical consideration.

 

Johnathan Jones: Clinics can hide data depending on the way they classify a procedure or patient. Clinics can also inflate their numbers by only treating the patients most likely to succeed at IVF.

 

[00:10:00]

Dr. Kushner:

 

We found ...

 

  Section 1 of 5          [00:00:00 - 00:10:04]
  Section 2 of 5          [00:10:00 - 00:20:04]
(NOTE: speaker names may be different in each section)

 

Jonathan : ... only treating the patients most likely to succeed at IVF.

 

Speaker 2: We found that centers will often compete with each other based on their success rates. So it's advantageous to a clinic to report higher success rates than another neighboring clinic. And I think that over many years that has transcended not just into selecting the type of patients that certain clinics take but also into the type of treatments that the clinic chooses to provide.

 

[00:10:30]

Bernice:

 

You also have to look at how clinics market themselves. We found lots of pledges of individual attention, promises of dreams fulfilled, even football analogies from a Florida doctor who pledged to "coach parents into the end zone".

 

Florida Doctor: "Team Brown never gives up baby because we know if we keep trying we will reach our goal."

 

Jonathan : And we noticed some clinics advertise their success at getting women pregnant, not delivering healthy babies. I visited one. The San Diego Fertility Center is right near the highway, just a couple of miles from the Pacific ocean. It's sleek and modern with a two story glass atrium and airy conference rooms that give it an upscale ambience. Marketing director, Jo Ann Levitan, shows us around.

 

[00:11:00]

Jo Ann Levitan:

 

These are all our babies (laughs).

 

Jonathan : The babies Jo Ann's pointing to are photos, hundreds of them. 8 tall framed collages line this wall. One baby grins from a bath tub wearing a wet spikey hair do. Another one sleeps in the lap of an enormous stuffed bear.

 

Jo Ann Levitan: Around the holidays we get the Christmas cards and [inaudible 00:11:48] hundreds from former patients and updates on their children. And they just love it. The doctors go crazy over it.

 

[00:11:30]

Jonathan :

 

Like most IVF centers, this clinic offers patients the option to use donor egg. Healthy eggs usually produced by young women whose ovaries are in peak conditions. One of the clinic's brochures boasts a 70 to 90% success rate with donor eggs. But they're advertising pregnancies, not births. The brochure does not say that some of those pregnancies will end in miscarriages.

 

[00:12:00]

Lisa Vandella:

 

So there's a journey to get to a baby, as you know.

 

Jonathan : Lisa Vandella is this clinic's CEO.

 

[00:12:30]

Lisa Vandella:

 

A lot of spontaneous miscarriages happen in this later phase because there's a genetic abnormality with the embryo.

 

Jonathan : She's the clinic's chief number cruncher. She fully understands that success rates can confuse potential customers.

 

Lisa Vandella: Because how did you gather your success rates? Did you count everybody that started on medication? Did you count everybody that had an egg retrieval? And did you get to try the treatment? Or did I tell you you couldn't try the treatment cause I didn't want you in my success rates? There's a lot of different ways to make success rates look good or bad.

 

[00:13:00]

Bernice:

 

This far from what Congress intended when lawmakers weighed in 25 years ago. It was 1992, 14 years after the first test tube baby was born in England.

 

Sen Ron Wyden : The profession at that time was pretty much the wild west as far as standards or data or disclosure. There was just no there there.

 

Bernice: Oregon Senator Ron Wyden was in the House of Representatives at that time. He sponsored a bill requiring fertility clinics to tell the CDC how many times they did IVF and how many patients had babies after the treatment.

 

[00:13:30]

Sen Ron Wyden :

 

Well people tell me that it gives them the ability to shop and get a better deal for themselves. I mean, you can have people spending 30, 40, 50 thousand dollars sometimes more for these services. And before this law people really had nowhere to turn.

 

[00:14:00]

Jonathan :

 

But we found the opposite of what Wyden claims. Success rates can provide a veneer of legitimacy to troubled clinics and leave room for clinic operators to promise too much. Bernice met a woman who spent 11 years and more than $50, 000 on fertility treatments that didn't work.

 

Bernice: Her name's Pamela Mahoney Tsigdinos. She's a tall, thoughtful woman who lives in Silicon Valley. She comes across as compassionate and driven. She and her husband stopped fertility treatments when she was 40. At that point, she was physically, financially, and emotionally drained.

 

[00:14:30]

Pamela :

 

You really don't think of yourself as full, as a full woman. You sort of feel a bit like an alien. You feel very isolated.

 

Bernice: Pamela, now in her 50s, felt the fertility industry had led her on. And led her astray.

 

[00:15:00]

Pamela :

 

We're sort of socialized with this understanding that if you want children you can have them.

 

Bernice: The World Health Organization defines infertility as the "inability to conceive after one year of trying the good old-fashioned way". WHO calls that a disease. Fertility clinics promote their services as a cure. Pamela has become a writer and activist who believe clinic operators should tell patients a lot more than they do now.

 

Pamela : What's not published are failure rates.

 

[00:15:30]

Bernice:

 

Nation-wide the failure rates are huge. 2 out of every 3 IVF cycles don't result in a live birth. 2 out of 3.

 

Pamela : And failure rates are important because people need to come into the experience understanding there is a very high probability that the people involved will not end up with the baby they came to create.

 

[00:16:00]

Bernice:

 

The CDC and the fertility industry group known as SART are moving toward publishing more nuanced information so patients may have a better idea if IVF can help them have a baby given their specific circumstances. But publish failure rates? Not likely says Dimitry Kissin, head of the CDC's fertility section.

 

Dmitry Kissin: The failure rates can be calculated but for consumers I think, when they start a new treatment I think they want to focus on the goal on the success of the treatment. So my personal opinion is that success rates will be more helpful.

 

[00:16:30]

Bernice:

 

Other believe success rates don't help consumers at all.

 

Jim Hawkins: They present the success rate in a way that, unless you're incredibly sophisticated, you can't really understand what it means.

 

Jonathan : Jim Hawkins teaches consumer law at the University of Houston and has studied the fertility industry. He says people should think about fertility doctors like they do used car dealers.

 

Jim Hawkins: When they kick the tires and say "This is not a very good car.", you kind of assume they're just talking you down so that you'll expect less. And when they give you the huge number upfront you assume that they're trying to get as much money as they can. But with a doctor you don't assume that they're trying to make money. So it's a different consumer area because people aren't suspicious at all.

 

[00:17:00]

Jonathan :

 

Even though fertility treatments are a big financial commitment. It costs $15,000 or more for one round of IVF. In the US only 15 states require health care plans to pay for infertility care and that coverage is often very limited. Some clinics offer package deals in which patients pay for 2 or more IVF cycles in advance.

 

[00:17:30]

Bernice:

 

Jim takes issue with the way clinic promote these deals. He's even spotted a billboard right outside his apartment that put a picture of a healthy, smiling baby right next to the words "Fall in love with our IVF specials.".

 

Jim Hawkins: It makes me wish that they would focus their advertising on other things instead of playing on people's emotions.

 

[00:18:00]

Bernice:

 

But emotions run deep in this business. For many patients success rates offer a tangible sign of hope and clinics like Dr. Salem's latch onto that hope in their advertising.

 

(Singing) This is the music for a video showing happy, healthy children, many cuddled in Dr. Salem's arms. (Singing) Hope, choice, happiness. And payment plans to make them happen.

 

[00:19:00]

Narrator:

 

We've seen how the fertility industry plays on those emotions, selling hope at a high price, using rate of success that aren't the best way for patients to decide how and where to get treatment. Bernice and Jonathan found out something else about the way clinics promote themselves. Doctors can boost their success rates by transferring more than one embryo at a time.

 

IVF Doctor: So will I do 2 embryos? Yes. Did I transfer 2 embryos this morning? Yes.

 

Narrator: That could mean twins, triplets, or more. Which puts moms and babies at risk.

 

[00:19:30]

IVF Doctor:

 

Do those patients know they're at risk of having twins? Yes. Do many of them want twins despite that risk? Yes.

 

Narrator: We'll tell you why when we come back. You're listening to Reveal.

 

[00:20:00] From the Center for Investigative Reporting -

 

  Section 2 of 5          [00:10:00 - 00:20:04]
  Section 3 of 5          [00:20:00 - 00:30:04]
(NOTE: speaker names may be different in each section)

 

Al: From the Center for Investigative Reporting and PRX, this is Reveal. I'm Al Letson.

 

Although science produced the first viable test tube baby almost 40 years ago, in vitro fertilization is still confusing territory for the growing number of people who consider it and even to some who've already done it.

 

At the start of this hour, we introduced you to Melissa Pineda. She attempted to have a child through IVF with the help of Doctor Rifaat Salem. Months later, she couldn't shake the experience from her mind

 

[00:20:30]

Melissa:

 

I didn't know the truth yet. It was still all in my mind and I couldn't figure out, at that time, whether I was going crazy. I just didn't know what was the truth or not.

 

Al: Reveal's Bernice [inaudible 00:20:44] and reporter Jonathan Jones kept trying to talk with Doctor Salem.

 

Jonathan: Hi Rosy, it's Jonathan Jones calling from Reveal. Just, is Doctor Salem in?

 

Al: One thing they wanted to ask, why had Doctor Salem put three embryos into Melissa? Transferring more than one at a time is a common practice, even though, as Bernice and Jonathan discovered, that can lead to all kinds of health risks for moms and kids. Fertility doctors know this, yet they continue to do it. In fact, you can see the huge increase in the number of twins born since people started using IVF by texting the word twins to us now.

 

[00:21:00] While waiting for Doctor Salem to get back to them, Bernice and Jonathan visited two other Southern California fertility clinics to learn why doctors risk transferring more than one embryo in a woman at a time.

 

[00:21:30]

Bernice:

 

I went to Reproductive Partners Fertility Center San Diego. Lisa Yo manages the lab here.

 

Lisa: Okay, so this is our embryology lab.

 

Bernice: She opens a heavy door and leads me inside.

 

Lisa: This is where the miracle, we call it that, happens. So-

 

Bernice: To prevent contamination of the embryos, I've put on a face mask, a hat, a blue paper gown, and booties over my street clothes and shoes. Inside the sterile zone, machines from refrigerator to shoe box size [inaudible 00:22:05] and beep.

 

[00:22:00] Can you tell us, there's this interesting machine back here that's making all of this interesting sound, what is it?

 

Lisa: Oh, it's a machine that tests the hormones. So, we do run progesterone-

 

Bernice: Lisa has been an embryologist for almost 30 years. She's seen major advances in reproductive technology. For example, she can now pick from a viable sperm and inject one directly into a tiny egg. The technology for freezing embryos, so that patients can use them in the future, is faster and more reliable than what they used in the past.

 

[00:22:30]

Gabriel:

 

My name is Gabriel Garzo.

 

Bernice: Doctor Garzo is the medical director here. He says those technological improvements mean doctors can reduce how often they transfer multiple embryos at once. That solves what he sees as an IVF related problem, too many twins.

 

Gabriel: So, it really is an ignorance or unawareness about the complications of twin pregnancies.

 

[00:23:00]

Bernice:

 

The notion of twins seems pretty innocuous, but Doctor Garzo knows the real risks they pose. While the vast majority of twins will turn out fine, they're more likely than single babies to have birth defects or to die before delivery. Often, twins are not fully developed when they're born.

 

Gabriel: Since most twin pregnancies are born at about a month prior to, you know, the usual length of pregnancy, which is 40 weeks, there are significant developmental problems because the brain develops tremendously during the last month of gestation.

 

[00:23:30]

Bernice:

 

It's not just babies who are at risk. Women carrying twins run a greater risk for gestational diabetes and preeclampsia, which is dangerously high blood pressure.

 

[00:24:00] Triplets and quadruplets used to be rare. Their numbers started to take off after the fertility business did. In response to a publicity frenzy over cases like octomom, who delivered eight babies at once, fertility doctors changed their practices. Since then, the number of triplets or more born in the United States has dropped, but twins, that's a different story. Twin rates have risen by about 75 percent in the US since IVF began. One out of every 30 babies born is now a twin. Again, in part because of IVF.

 

[00:24:30] Doctor Garzo is among the fertility doctors in this country who are committed to using just using one embryo at a time for women under 35, unless there's a valid medical reason not to. Industry groups and the government recommend this practice. It's safest, with the best long term results.

 

Gabriel: So we can offer to our patients, not only a baby, but also healthy baby, which is really what everybody wants.

 

[00:25:00]

Bernice:

 

We decided to figure out how many doctors are like Doctor Garzo. That's why we analyze data from the Centers for Disease Control and Prevention from the nearly 500 IVF clinics in the United States. We found that most are not like him. More than three quarters of the clinics still routinely transfer more than one embryo at a time in women under 35, including the San Diego Fertility Center, the clinic Jonathan visited earlier. That's the one with all of the baby photo collages. He met its medical director, Doctor Michael Kettle.

 

[00:25:30]

Michael:

 

So, I'll just try to give you my 30 second, sort of, overview.

 

Jonathan: Yeah- [crosstalk 00:25:40]

 

When we meet, he's wearing maroon scrubs with the clinics name embroidered in white. We sit around a small table near a large window in his office. Diplomas and certificates fill the wall above us.

 

Michael: There's UC San Diego, where I did my fellowship. There's Alpha Omega Alpha, that says I was smart in medical school.

 

[00:26:00]

Jonathan:

 

CDC data from 2014 shows that Doctor Kettle's clinic was responsible for producing more multiples, mostly twins, than almost any other clinic in California. He knows twins carry risks and sometimes need long term expensive care.

 

Michael: So, if you ask the insurance company, they'll say twins is a disaster because, no doubt about it, a twin pregnancy costs them more money. There's a higher incidence of anything that you might want to say.

 

[00:26:30]

Jonathan:

 

The doctor tells me he won't do three embryos, but he says most of his patients want two embryos inserted.

 

Michael: So, will I do two embryos? Yes. Did I transfer two embryos this morning? Yes. So, it's something that we feel like we want to give the patient a major role in that decision making process. Do those patients know they're at risk of having twins? Yes. Do many of them want twins, despite that risk? Yes.

 

Jonathan: Well, I guess one of the things you said was that you would counsel them and I'm wondering what you would say to them in terms of counseling them about the risks.

 

[00:27:00]

Michael:

 

Yeah, I have a sheet if you want to see it, that talks about the risk of twins. This is one I got from a huge practice in New Zealand. I just got this so I want to put this on our letterhead and our stuff, but it's interesting reading. Risk to the mother, hospitalization for ovarian hyperstimulation, two times higher. The risk of serious brain hemorrhage around birth to the baby is five times higher with twins. Respiratory distress is six times higher with twins. Cerebral Palsy is five times higher with twins. Now, that said, the other interesting statistic is that most twins do fine. So, yeah, it's five times higher, but it's not 100 percent of the time.

 

[00:27:30]

Jonathan:

 

And he goes with that. Not all of the time. A risk Doctor Kettle considers worth taking. But, how does it work out for his patients? It's hard to tell because the industry just started releasing data that would help figure that out. Only two years worth are available. In 2014, eight percent of the babies born to women under 35 who did IVF at his clinic arrived very premature. That's about twice the national average. Very premature means born more than a month early. The clinic's numbers improved significantly in 2015. Doctor Kettle tells me he rarely knows what happens to preemies, twins, or any children born to parents treated at his clinic.

 

[00:28:30]

Michael:

 

You're aware of things that happen up to the birth of the babies, but then followup after that nigh to impossible.

 

Jonathan: When things don't go well, it can mean a lifetime of challenges. Bernice has one woman's story.

 

Bernice: Janet [inaudible 00:29:02] is a Communications professor who lives just outside of New York City. She did IVF four times

 

[00:29:00]

Janet:

 

The first doctor actually said "You do IVF, hopefully you get two eggs, two fertilized eggs. Hopefully it's a boy and a girl. Instant family", and I bought in to that mentality.

 

Bernice: She says no doctor mentioned any risks around carrying multiples or made time to discuss them.

 

[00:29:30]

Janet:

 

In each instance, I was asked "How many fertilized eggs do you want to transfer", while I'm on the table, ready for the procedure. "Okay, we have these many eggs, how many would you like to put in". I didn't know any better because that is the way it was done each time.

 

Bernice: On her last try at IVF, she gave birth to twin boys.

 

Janet: This is Andreas and this is Zachary.

 

Bernice: Janet keeps a black and white photo of the boys as toddlers beside her desk. In it, both of her sons are ginning.

 

[00:30:00] Yeah, how old are they?

 

  Section 3 of 5          [00:20:00 - 00:30:04]
  Section 4 of 5          [00:30:00 - 00:40:04]
(NOTE: speaker names may be different in each section)

 

Speaker 1: Yeah how old are they?

 

Speaker 2: They look about two and a half to me, or three maybe.

 

Narrator: Her sons are 14 years old now and the risks we've heard about twins have become real. Zachary is active in band, sports, and school. His twin Andres can't speak, feed himself or move on his own. He's been diagnosed with cerebral palsy. Janet firmly believes the number or multiple pregnancies would drop if fertility doctors routinely spelled out the risks.

 

[00:30:30]

Janet:

 

The complicate by creating children who have disability. A population of kids, several generations of kids, with disability.

 

Narrator: Andres is an upbeat, skinny kid who loves to ride in his dad's convertible. Janet already imagines his life as an adult. Painful as it is for her to say, this is what she hopes he lives to do.

 

Janet: Bury him. That's the only thing I want. I don't want him to be in the world without me. Without us.

 

[00:31:00]

Narrator:

 

Now. Let's be clear here. The vast majority of twin babies turn out just fine. While the risk of cerebral palsy runs higher in twins, doctors can never be sure what causes it.

 

Speaker 5: That still leaves us with one question: Why are some doctors so driven to transfer more than one embryo at a time?

 

[00:31:30]

Narrator:

 

It goes back to those success rates we've been talking about. The way the CDC tallies the success rates doctors advertise the most counts only what happens the first time a doctor inserts embryos into a woman right after her eggs are collected. Just that first try.

 

Speaker 5: Using multiple embryos does boost the chance of a pregnancy, but as we've heard the risk isn't necessarily worth it. Because if a woman freezes her good quality embryos and inserts them individually, her chance of getting pregnant over time is just about the same.

 

[00:32:00]

Narrator:

 

In other words, the way success rates are calculated gives doctors an incentive to transfer multiple embryos more often than patients need. That exposes patients to unnecessary risk.

 

ALex: To patients who want to take that risk, twins may seem easier and cheaper than repeating IVF, but Bernice and Jonathan discovered that patients often don't get enough information or opportunity to really consider their options. That's not the case everywhere. Many European countries and Australia have policies that encourage doctors to transfer just one embryo at a time. The twin rate in those places is much lower than here in the US. The CDC plans to change the way of publishing data by 2019. It's an effort to increase the number of single embryo transfers done here.

 

[00:33:00] Next up, Bernice and Jonathan meet Dr. Salem.

 

Speaker 7: You would agree it's rare to get the written consent after the procedure rather than before.

 

Speaker 8: Well, to be honest with you, I don't know.

 

ALex: And they finally get to the bottom of Melissa Penato's story. If you want to see what Dr. Salem looks like, text DOCTOR to us right now. You're listening to Reveal.

 

[00:33:30] From the center for investigative reporting in PRX, this is Reveal, I'm Alex.

 

We've been investigating this hour the business of making babies in a lab. More and more people in the US and around the world, rely on fertility doctors for help having children. From any would-be parents, this industry has worked miracles. It's also a business that offers few protections to consumers, even as they fork over thousands of dollars with no guarantee of success. Earlier, Melissa Penato told us how things went wrong at the Pacific Reproductive Center, run by Dr. Rephat Salem. He's called her into his clinic on a Sunday, two days after transferring embryos into her womb. She thought he was going to examine her, but what she experienced was a scraping feeling inside. After he finished and left the room, a nurse stayed standing next to Melissa's bed.

 

[00:34:00]

Melissa:

 

And I started crying and I looked at her and I said, "Did he just give me an abortion?" And she said, "You're so strong. You're so strong." Then she unstrapped me from the table and I was on the gurney and I was crying and everything changed because I knew something bad happened.

 

[00:34:30]

ALex:

 

That something bad turned into a D&C. It's a surgical procedure doctors use to remove tissue from inside a uterus. Melissa didn't know why Dr. Salem had performed the procedure. She and her husband David said they didn't find out the truth until they sued Dr. Salem. You can see a snapshot of some of Melissa's deposition by texting LAWSUIT to us.

 

[00:35:00] Reporter Jonathan Jones and Reveal's Bernice Yearn spent months tracking down the full story and finally arrived at Dr. Salem's clinic where it all started.

 

Jonathan: It took nearly eight months of email and phone request before we got Dr. Rephat Salem to sit down and talk with us. His business includes four fertility clinics and a group of surgical centers in the Los Angeles area. At his main clinic in Torrents, we pull open the glass entry doors and take the elevator to reception on the second floor.

 

[00:35:30] A flat screen TV plays in the tidy waiting room. A handful of patients talk quietly. It feels pretty calm for a place where big life decisions happen.

 

Dr. Salem, how are you?

 

Dr. Salem: Hello. Good morning. How are you doing?

 

Bernice: Dr. Salem welcomes us into his small office back near the exam rooms. He's in sky blue scrubs and white doctor's coat. We asked him to ballpark how many babies he's help create over the decades he's been doing this.

 

[00:36:00]

Dr. Salem:

 

In the tens of thousands, how can I tell? You think I know?

 

Jonathan: I don't know.

 

Dr. Salem: In the tens of thousands, a lot.

 

Bernice: He's been in the IVF business since the early days.

 

Dr. Salem: We would do a baby reunion every year. I remember in 1997, how long ago? 20 years ago? At one thousand babies attended my baby reunion.

 

[00:36:30]

Bernice:

 

2015 figures show that Dr. Salem's Pacific Reproductive Center was one of the top clinics in the country for births through IVF. We asked how he achieves these sky high success rates. He clicked the ballpoint pen and grabbed a piece of paper.

 

Dr. Salem: This is part of the preparation. Why we do better.

 

Bernice: And her started to draw an anatomy lesson.

 

Dr. Salem: This is the uterus. This is the cervix. This the vagina, the tubes. This is the ovaries here, all right?

 

[00:37:00]

Jonathan:

 

Mm-hmm (affirmative).

 

Dr. Salem hangs his success on several factors. First, an extra close examination of the uterus to find any folds and fibroids that might make it hard for a pregnancy to take. Second, removal of the eggs from a woman's ovaries only at their ripest time. Third, staffing the clinic with skilled embryologists. And there's more.

 

Dr. Salem: Come with me.

 

Jonathan: Okay.

 

Dr. Salem: I'll go to the roof and show you how we built our private F lab.

 

[00:37:30]

Jonathan:

 

Sounds good.

 

Dr. Salem: This was designed by some of the ...

 

Jonathan: He takes us up the back staircase to the roof, where he shows off the air ducts that connect to his lab.

 

Dr. Salem: These were built for the IVF lab.

 

Jonathan: And what does this do?

 

Dr. Salem: Filters. Inhibited filters that filter to make sure the environment there is clean.

 

Jonathan: Okay.

 

Dr. Salem: Okay?

 

Bernice: It's hard to know how any of this affects his numbers. As we've heard this hour, clinics can hide a lot of important information behind impressive IVF success rates, and doctors can take unnecessary risks to boost them. Still, Dr. Salem consistently promotes the figure as the best way for fertility patients to find a good clinic.

 

[00:38:00]

Dr. Salem:

 

It's the final answer, you know what I mean? It is if you have a good success rate makes everything work.

 

Bernice: But we found, you can't judge a clinic entirely on its success rates. Potential patients should look at other indicators of quality care. How closely doctors stick to transferring one embryo at a time and how many healthy full-term babies a clinic produces overall. Many patients told us the most useful thing they did, was consult with several doctors before choosing a clinic. Nisa Wilson did just that. Early on, she met with Dr. Salem. She investigates consumer fraud for a living so she tuned into the specific he used as they discussed her circumstances.

 

[00:38:30]

Nisa:

 

Dr. Salem used "old" and "older". It's like keywords and if you ... I'm an investigator, I know how to manipulate conversations, not that I'm trying to feed them anything, but I'm going to get them to react. And that's kind of how Dr. Salem dealt with everything. He gave you aggressive words that you would react to and would chip away at you in your vulnerable state.

 

[00:39:00]

Bernice:

 

Nisa knew the desire to have a baby can lead people to liquidate their retirement savings or mortgage their homes to pay for fertility treatments. Still, she and her partner were surprised at how quickly the conversation turned to money.

 

[00:39:30]

Nisa:

 

After we met with Dr. Salem, we met with a nurse and she talked about different possible financial structures of paying for the what ifs. They were so interested in making sure they had a step foot forward in getting things signed so that you would have to be in financing of something and be obligated in some way for payment to them. They wanted money is basically what I felt.

 

  Section 4 of 5          [00:30:00 - 00:40:04]
  Section 5 of 5          [00:40:00 - 00:51:42]
(NOTE: speaker names may be different in each section)

 

Speaker 1: Dr. Salem says he gives patients options, so they can make their own decisions. Like many in the industry, he offers package deals. Pay in advance for two or three for one IVF cycles. If the patient gets pregnant right away, some clinics keep the extra money. If the patient goes through several rounds of IVF, the clinic won't make as much.

 

Some programs offer a money back guarantee if no pregnancy happens. Sharon McKenzie, the financial coordinator at Dr. Salem's specific reproductive center, says the setup helps patients and doctors share financial risk.

 

[00:40:30]

Sharon McK:

 

It's not often they get it in the first cycle, it's usually two or three, and if they hit the second cycle, they've already gotten a discount. If they hit the third cycle, it's a big discount.

 

Speaker 1: Because it's so hard for patients to evaluate their prospects of success, it's hard to figure out if this offer is a good match for their own circumstances.

 

The fertility industry association warns about the potential for coercion. Clinics choose who can participate. Often, these deals do not include everything a patient needs for IVF. And some count success as a pregnancy, not a child.

 

[00:41:00]

Speaker 4:

 

It's also really difficult for consumers to get details of lawsuits against doctors. We analyzed federal data from 1990 through last year, and learned that Dr. Salem is among just one percent of physicians nationwide who have made at least four payouts to patients after lawsuits. Even harder to confirm, confidential settlements between doctors and patients, or when a doctor's previous clients have had experiences like Malissa Pineda.

 

[00:41:30]

Dr. Salem:

 

We do very sophisticated surgery here, and when we take the eggs, eggs goes to the lab right there.

 

Speaker 1: Dr. Salem shows us his labs and patient rooms nearby. When Malissa arrived here that Sunday morning for what she thought would be an exam, she lay on a bed in one of these rooms. We've heard what she experienced there; but remember, at that time, Malissa says, she didn't know exactly what Dr. Salem had done ... or why.

 

[00:42:00] We asked the doctor to explain. He says he called Malissa in that day to fix a mistake.

 

Dr. Salem: The mistake was made innocently by my embryologist. She pulled the wrong dish.

 

Speaker 1: Pulled the wrong Petri dish. Someone else's Petri dish.

 

Dr. Salem: Which was genetically abnormal embryo ready to be discarded. And she load the three and I transfer the embryo.

 

Speaker 1: Dr. Salem says the lab was supposed to get rid of the other couple's embryos.

 

[00:42:30]

Speaker 4:

 

Malissa knew Dr. Salem had transferred three embryos into her. But she says she didn't know they belonged to someone else. She'd expected an exam. When she felt him scraping inside her, she feared that he was trying to clear her womb. Malissa says she most certainly had not given him permission to do that. Dr. Salem insists that's not true.

 

Dr. Salem: A lie. L, i- whatever you- it a lie. And I'm very upset but I'm not angry for her.

 

[00:43:00]

Speaker 4:

 

During our interview, he calls in staff to back him up.

 

Dr. Salem: Let me see if I can see my nurse that did that here, hopefully still here, probably she left already. "Is Kate still there? Kate and Rose, can you please? Thank you."

 

Speaker 4: Kate Ferris is the nurse who was with Malissa when Dr. Salem removed the embryos.

 

Dr. Salem: Kate, come here. Kate is in charge of the operating room here. This is a woman where everybody loves her. You know what I mean? The most straight person you'll ever get in your life from Kate.

 

[00:43:30] We talking about that Pineda case here, right? We talk about the consent. Tell me what happened.

 

Kate: What happened with the consent?

 

Dr. Salem: Yeah.

 

Kate: What do you mean, when she signed it with the procedure, or what did you want to talk about though?

 

Speaker 1: Malissa signed a consent form for the abortion procedure, listed as a D&C, after it was done. That violates basic standards of medical care.

 

[00:44:00]

Dr. Salem:

 

It looks like she signed it afterward.

 

Kate: Right. She did.

 

Dr. Salem: But she walked and she knows what I did.

 

Kate: Yeah, there was definite- oh, okay, so there was definitely a verbal consent. Dr. Salem talked to the patient, I talked to the patient, everyone talked to her.

 

Speaker 1: And did she know that there had been a wrong embryo emplaced in her?

 

Kate: Well, definitely she told- I remember that very well. When I got there, I said, "What are we doing?" At that point, I was still waiting to find out what had happened; and then when I saw her, she said, "They put the wrong embryos," or something like that, "I got the wrong embryos and we need to take care of it now." So she definitely- I know, for sure, she understood that.

 

[00:44:30]

Speaker 1:

 

Kate leaves, and we turn back to Dr. Salem.

 

You would agree it's rare to get the written consent after the procedure rather than before.

 

Dr. Salem: Well, be honest with you, I don't know. Yes, there I think to do it before, but again you know, just what- yesterday, I did a procedure, and then we had to go and look, do a laparoscopy. She did not sign a consent for the laparoscopy. In time of emergency, you don't need a consent. So we do it. You know what I mean? We deal with normal people and they knew exactly our intention, you know what I mean, oral consent or oral contract. And she still sign it at the end of the day. She did not object. She knows exactly what she doing.

 

[00:45:00]

Speaker 1:

 

Dr. Salem didn't follow standard medical practice with Melissa in a couple of other ways. Experts hired by his own lawyers testified that he failed to properly document the medical advice he had given to the Pinedas. They said he should've given them more time to think about their options, including the option to do nothing.

 

[00:45:30]

Speaker 4:

 

Dr. Salem regards people who sued him over the way he runs his clinic as "jealous rivals". Or ...

 

Dr. Salem: Angry patient. I mean, patient that comes so emotionally here and they do not get pregnant, they point the finger to anybody.

 

Speaker 4: He thinks that instead of suing him, Malissa should've let him try another round of IVF.

 

Dr. Salem: So where they actually could have walked away with another baby with us, if she didn't think that she get some money, what it worth for her? Come back, she could have got a baby with us again.

 

[00:46:00]

Speaker 4:

 

The Pinedas are dumbfounded by everything he told us. We asked them if they had understood in advance what procedure he planned to do. David says Dr. Salem spelled out nothing.

 

David P: He tried to sweet talk us and promise us and fool us so we had no clue what was about to take place. Cause had he said, "Okay, look, I'm about to give your wife an abortion," she- all the things that took place- if he had said just the first thing that I said, I would've looked at him and said, "You're crazy. We're going home. I dunno what's going on, we'll figure it out, we'll get a lawyer, whatever. We'll work this out, but we're not gonna let you just do what you want right now because you guys made a mistake."

 

[00:46:30]

Speaker 4:

 

The Pinedas say they did not realize that the doctor had inserted someone else's embryos until months later, when their lawyer deposed Dr. Salem under oath. That knowledge upset Malissa even more.

 

[00:47:00]

Malissa P:

 

My heart was so broken and I just cried constantly about those babies. Whose babies were they? I would've given birth to someone else's babies. I would've loved to have done that for someone. I just, I was so overwhelmed.

 

Speaker 4: David still feels vulnerable, and angry.

 

David P: If we ever allowed it again, which we wouldn't, I would say, "I want to see the process. I want to see what it is you're doing so I know that you're doing what you're supposed to be," because in reality, we have no idea.

 

[00:47:30]

Speaker 4:

 

Last Fall, David and Malissa settled their lawsuit against Dr. Salem the day it was supposed to go to trial. Even though Dr. Salem claims the Pinedas lied about what they knew, he paid them $250,000. By settling, he doesn't admit liability.

 

[00:48:00] The couple tried IVF again at a different clinic. Malissa got pregnant twice, and miscarried both times.

 

Three years after her experience with Dr. Salem, longing still shadows even happy times for Malissa.

 

Malissa P: Okay, Piper, go run in there. I'll be in there in a minute, okay? I love you.

 

Speaker 4: She drops off her seven year old daughter Piper Joy at tumbling class, and lingers in her parked car. She still wishes she could have another child.

 

Malissa P: Not because we need more on our plate, because I still have so much love and I've been blessed with so much, and there's so many people that don't have ... I'm just ... that's who I am. That's why I wanted more children, because I still have so much more love in my heart.

 

[00:48:30]

Al Letson:

 

During the decades fertility science has developed, society has changed. There are more same sex couples with the full rights and privileges of marriage and parenthood, and more single women who choose to become mothers. Some workplaces, including the US military, now cover the costs for their personnel to harvest and freeze their eggs and sperm so they can focus on their careers first, and on having children later.

 

[00:49:00] All of this means, the fertility business touches an ever increasing number of people's lives, and is expanding.

 

Dr. Salem is going international.

 

Speaker 10: Jamal and Layla have been married for ten years, and for the past three have been unsuccessfully trying to have children. After trying every home remedy option known to mankind, a friend introduced them to PRC Dubai.

 

[00:49:30]

Al Letson:

 

That's right. Dr. Salem's clinic has opened up shop in Dubai, in the United Arab Emirates. The website trumps the arrival of a medical practice with 25 years of success in America.

 

Speaker 10: We create families every day. And our success is measured in birthdays.

 

Al Letson: Thanks to Jonathon Jones and Bernice Yeung for bringing us their story on the IVF industry. Their editor was Andy Donohue. To read their full investigation, including three ideas on how to solve some of the problems we heard about today, go to revealnews.org. Emily Harris was our lead producer on today's show, and our editor was Cheryl Devall.

 

[00:50:00] And in podcasts that you should check out, there's a new one from WHYY called "Cosby Unraveled". It explores Bill Cosby's beginnings in Philadelphia, the height of his influence, and the cause of his downfall. In addition to the three part documentary, they'll be adding episodes as the trial unfolds. It's available now at WHYY.org or wherever you get your podcasts.

 

Our sound design team is the wonder twins: my man, J Breezy, Mr. Jim Briggs, and Claire "C-Note" Mullen, with help from Catherine [inaudible 00:50:54]. Our head of studio is Christa Scharfenberg, Amy Pyle is our editor in chief, Susanne Reber is our executive editor, and our executive producer is Kevin Sullivan. Our theme music is by Camerado, "Lightning". Support for Reveal is provided by the Reva and David Logan Foundation, the Ford Foundation, the John D. and Catherine T. MacArthur Foundation, the John S. and James L. Knight Foundation, the Heising-Simons Foundation, and the Ethics and Excellence in Journalism Foundation.

 

[00:51:00] Reveal is a co-production of the Center for Investigative Reporting and PRX. I'm Al Letson, and remember: there is always more to the story.

 

  Section 5 of 5          [00:40:00 - 00:51:42]