The price of life: Treating infertility

It is the year 2027 and mass global female infertility leaves humankind facing extinction. It sounds like the plot of a film – and it is. The 2006 production Children of Men tells the story of an infertile human race struggling to survive with little hope or chance for new life.

And with regular reports lamenting growing rates of infertility, and fertility clinics popping up with greater frequency than Starbucks coffee shops, it is easy to believe that a global fertility crisis looms.

But what is the reality, and just how far are people prepared to go to conceive?

National Health Service (NHS) figures from the UK show that one in six couples is classified as infertile, and it is the same in the US. Figures from Qatar suggest that 16 percent of couples are infertile, and in India 30 million couples, which accounts for 10 percent of the population.

The result is a booming fertility business. And with a range of expensive assisted reproductive technologies on offer, for many, the cost of a human life is priceless.

At any cost

Take Dina Salam, for example. A successful Palestinian businesswoman in her 40s, Dina married her American husband, Hisham, six years ago. The newlyweds – then in their late 30s – were full of hope. Living and working in Qatar, they had a beautiful home, home-help, individual cars and frequent holidays abroad.

“I was 38, and my husband and I were very keen to have kids and raise a family, so six months into our marriage I visited a doctor here in Qatar to find out why I hadn’t conceived. The doctor referred us both to a fertility specialist who suggested we try IUI – artificial insemination. So we did. Three attempts later, and still nothing,” Dina explains.

“My doctor advised us to go for IVF, and I was totally convinced that this would be our solution.”

In the Salams’ case, Hisham has weak sperm. The doctor suggested the only way they could conceive would be to remove Dina’s eggs from her ovaries and fertilise them with Hisham’s sperm before transferring the embryo back into Dina’s uterus – a process known as in-vitro fertilisation, or more commonly as IVF.

“That’s when we started our IVF journey – first to Florida, then Doha, Jordan, Bahrain, and lastly New York. Each attempt failed.”

Like most women undergoing IVF, Dina had to have several rounds. On average, a patient falls pregnant only one out of three times, so IVF often has to be done repeatedly, and it is a costly business.

“We’ve spent close to $100,000,” she says.

Fertility clinics in the US alone are thought to be part of a $4.5bn industry – which is still largely unregulated. And that figure is set to rise to $4.8bn within the next four years.

It is a simple supply-and-demand model, but the product on offer is a baby – something many seem willing to spend their last penny on.

World-renowned IVF expert Professor Lord Robert Winston says couples are often exploited.  

“The combination of desperation … [at] being infertile and the fact some couples are prepared to pay large sums of money … for fertility treatment leads to exploitation.

“It didn’t use to be like this. When I first started in the field of IVF, clinics would only charge what was felt appropriate. We need reasonable ethical standards applied, but the problem is that private medicine is very expensive, and medicine in the commercial market is at risk of being treated as a commercial commodity.”

It is exactly because patients such as Dina and Hisham are willing to invest thousands of dollars in treatments that fertility programmes continue to compete fiercely for patients, advertising high pregnancy rates and sometimes even offering patients financial incentives.

The competition for patients worries those who fear that doctors will use risky medical practices to try to boost pregnancy rates, or that clinics will mislead patients about their chances of conceiving, let alone carrying to term.

Risky business

S Lochlann Jain, a professor at Stanford University in the US, thinks the IVF process is itself a risky business.

She says that transferring three or more embryos in an IVF procedure – standard practice in many clinics in the US – is a flawed and dangerous precedent. She refers to a study in The Lancet medical journal which states that transferring three embryos instead of two makes no difference in the rate of live births in older women. But three or more embryos in any age group significantly increases the risk of complications, such as premature birth and low birth weight.

In Jain’s upcoming book, Malignant: How Cancer Becomes Us, there is a chapter linking some forms of fertility treatment to cancer.

“The fertility industry is very careful about what data it keeps and what data it does not,” Jain says. “Therefore, it is easy to say that the data does not suggest that fertility drugs increase rates of cancer when, in fact, no one has done the research to see what correlation does exist.” 

Niloofar Rezai, a UK-registered, Qatar-based homeopath and complementary therapist, says: “Research, unfortunately, does exist to show cancer rates in mothers and children of IVF, alongside other diseases which include polycystic ovaries [PCOS], a small risk of mental deficits in children, and a much disputed 50 percent risk of ovarian cancer.”

Jain herself has a personal tale. In 2000, she took fertility hormones to produce enough eggs to donate. Four years later, Jain had cancer. She remembers asking the doctor conducting the procedure if there were any links between cancer and egg extraction, but says her question was dismissed.

She went on to study the link and looked at the long-term effects of hormone drugs on fertile women who have undergone egg extraction.

“Donated eggs account for over a quarter of IVF live births, even though only about 12 percent of IVF procedures use them. In other words, while donated egg cells account for a mere three in every 200 births in the United States, the practice underpins the very viability of a multibillion-dollar industry whose success rates would be too low without them.”

Jain discovered that there was no protocol in place for clinics to contact women after egg extraction, and that no agency collects data on subsequent health issues a woman may encounter.

The IVF industry portrays the procedure as generally successful and extremely safe.

“IVF advertisements peddling motherhood portray sweetly swaddled babies, and the IVF clinic welcomes would-be patients with pastel pink and blue walls replete with large framed pictures of chubby little hands and feet,” Jain writes in chapter six of her book.

In the US, clinics administer about 120,000 IVF cycles annually, but with no central agency to collect this data, numbers are estimates.

“This unregulated free-market approach to fertility is nothing short of human experimentation based on financial incentive and medical hubris,” says Jain.

Hope and faith

Sarah Howard has been trying to conceive for five years and says hospitals benefit from couples’ infertility issues: “They prey on couples who are desperate to have children. They often give you a small amount of hope. I can tell you first-hand that the small amount of hope is enough to hand over large amounts of money.

“I will guarantee that people will continue to give them money because we put all our hope and faith in them as professionals. We let ourselves believe that they have our best interests at heart.”

It is a costly business, both financially and emotionally, but Hannah Walker, a 39-year-old American designer, believes the time and money she has spent on trying to conceive a child has been worth it.

“It was part of my life experience and led me to where I am today. The issue I had is that I was undiagnosed for so long. I wish I had done more research before going to these people. I counted on them to diagnose me or send me to someone who could, and they didn’t.

“Fertility doctors have a one-track mind and whether that’s right or wrong, that’s the way it is. I kept every lab report, ultrasound, and carried my own file with me to these different doctors. I made sure that I was informed and even suggested to doctors the therapy I needed – after doing my own research. They didn’t take well to that and really have a God complex about them … They’re pretty arrogant.”

When all ‘facts’ are not created equal

It is a widely reported “fact” that many women now wait too long to start a family. Dina was told by doctors in the US that her inability to conceive was due to her age.

But Dr Jean Twenge, a professor of psychology at San Diego State University, says all may not be as it seems. She says that we are told that women’s fertility levels take a significant drop once they hit 35 and that one in three women between the ages of 35 and 39 will not fall pregnant after a year of trying. But Twenge says this data is based on research that was conducted in France between 1670 and 1830. A time, as she puts it, “before electricity, antibiotics or fertility treatment”.

She says that while fertility does decline with age, many women in their late 30s do have children. And in July’s edition of The Atlantic magazine, Twenge reminds us that most fertility problems are not because of a woman’s age. She cites blocked Fallopian tubes and endometriosis as key factors that can affect a woman at any age, while stressing that in half of all infertile couples, it is the man who has fertility problems.

Professor Lord Winston, Emeritus Professor of Fertility Studies at Imperial College London, says the media is responsible for presenting an inaccurate picture of current levels of fertility: “Newspapers do not give a fair reaction; they tend to write what they think people want to read. British national statistics for 2011 show there were 905,000 pregnancies in Britain. That has never been surpassed since the 1950s. Figures show fertility levels are not decreasing nor remaining static; they are higher than ever before. The number of actual births – not pregnancies – was around 760,000, much more than in the 1990s.”

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The World Health Organization (WHO) concurs, saying that despite media hype suggesting growing infertility rates, figures have stayed pretty much constant since 1990.

A study led by WHO looked at infertility levels in 190 countries between 1990 and 2010. The study found that in 2010, 1.9 percent of women aged 20 who wanted to have children were unable to have their first live birth (referred to as primary infertility), and 10.5 percent of women who had previously given birth were unable to have another baby (referred to as secondary infertility) – a total of 48.5 million couples.

Gretchen Stevens, the lead author of that study, says: “Unfortunately, there are not many studies that directly measure infertility in general populations; those studies that exist often use inconsistent definitions of infertility and are not comparable – so they don’t tell us anything about trends in infertility.

“The only country which carries out repeated studies to determine infertility prevalence is the US, and the data from the US do not show any significant change in infertility prevalence.”

Stevens and her team used widely collected demographic data to infer the prevalence of infertility in different countries over time. They used the demographic definition of infertility, which differs from the standard clinical definition of infertility, which is failing to conceive after a year of trying.

“In the definition we used, a couple was considered infertile if they did not have a child after five years of trying – so a couple that quickly goes for infertility treatment might be considered fertile. We do not think this had a large effect, though, since the US data would not consider such a couple fertile and also did not show any change in infertility prevalence,” she explains.

“We concluded that globally, infertility prevalence is unchanged; some types of infertility may be increasing in high-income countries; and infertility is clearly decreasing in sub-Saharan Africa. We did not determine the reason for these changes – or lack of change.”

Tick tock

Winston reminds us that we should not believe everything we hear in the media: “Women have now gained equality in the workplace, which is a great thing, and they are tending to leave babies until later. But with the media writing terrible scare stories about leaving it too late, many women are being frightened into turning to IVF. In the UK, the average first birth is at 31 but fertility rates don’t start dropping until after 40 and 42. There is a long way to go before they are seriously doomed.” 

The whole ticking biological clock theory does not apply to 25-year-old Sarah Howard either. Her and her husband, Shaun, have been trying to conceive for five years.

“As a couple we are put in the category of being young so we have plenty of time. I always get so annoyed when people tell me this. It doesn’t matter how old I am because we are all on the same fertility journey. Someone else’s need for a child isn’t greater than mine because they are older.

“Our fertility journey began in Ireland when I was 20 but ultimately it started when I was 16. I was in England and visited my doctor concerned about my irregular cycle. He put me on the contraceptive pill and said it would sort itself out in time.”

Sarah met Shaun four years later. They decided to start trying for children, so Sarah came off the contraceptive pill. But she noticed that her menstrual cycle was even more irregular than before, and PCOS was soon diagnosed.

“I was shocked to think I was only 20 and something that was meant to be natural for a woman I couldn’t achieve. I was referred to the fertility clinic in our local hospital for further investigations and for my husband to also be investigated. We found out that my husband had a low sperm count with poor mobility.”

After four months of investigations Sarah was prescribed Clomid and Metformin – the first to induce ovulation and the second to treat her PCOS. She was sent on her way with no follow-up appointments.

“It didn’t work and I couldn’t bring myself to go back to the hospital. At that point it had not cost me anything financially, but mentally it was stressful,” she says.

Sarah and her husband moved to Qatar, where they have been continuing their quest for a baby.

“We were expecting long waiting times here in Qatar, but at my first appointment at a private hospital I had multiple tests done straight away and my husband scheduled for the week after. I couldn’t believe how quick the process was in comparison to England and Ireland. Before we could even mentally digest what was happening I was scheduled for an IUI. The IUI didn’t work and we had a further two over the following five months until February this year.”

The couple was referred to the country’s general hospital, Hamad, which performs around 1,200 IVF cycles a year. But they decided to take a break and save some money before starting IVF.

“Although treatment is cheaper here than in Ireland and England, we were living month to month on our money and even ended up borrowing on credit cards to pay for treatments.”

Amy Hudson, an editor for a Gulf-based research centre, and her husband Khalid, a pilot, had been trying for a baby since 2007 when Amy was 28.

“We were living in Seattle at the time and I found out that I had endometriosis, so in the spring of 2008 I had surgery to remove it,” she says. “We tried for four years before considering IVF. I was managing to get pregnant but kept miscarrying. I remember one was at eight weeks and one was at 12 weeks.”

In total, Amy had five miscarriages.

As she headed into her early 30s, a family friend who was also a doctor advised her to start thinking about fertility treatment.

Physical costs

Rezai says that once conception and birth occur, the hardships of trying to conceive often seem worthwhile, but “the long-term physical assault of repeated IVF cycles are still under-investigated, both for the mother and child”.

For Sarah, fertility treatment was physically and emotionally painful.

“The hormonal medication – injections almost daily – made me very emotional and I would often cry for no reason and shut my husband out. He would try to be patient but I felt like he didn’t understand how I felt.

“I would have terrible pains in my sides; my back would cause me the most pain, leading to restless nights. I would sometimes vomit and feel nauseous most of the time during the medication. Emotionally I would be moody, sad, crying and often dwell on the fact that we were not getting pregnant.

“It was also hard going to any of the shopping malls in Doha as you often see a lot of pregnant women. I would think how easy it was for them and feel jealous. My relationship wasn’t really affected because my husband is patient but at one stage all I talked about was fertility [and] babies and it got to a point when my husband told me to stop talking about it.”

Hannah and her husband Ahmed started trying to conceive a year into their marriage. After trying for a year they decided to get help.

Hannah says: “When the second IVF pregnancy terminated, we drew the line. It was incredibly difficult – emotionally, physically and spiritually.  Without the right support I found that I couldn’t do it any more.  And after injecting myself X amount of times a day with God knows what, we decided that we needed to take a break. I was only 31 at the time and figured I had some time. I resented my partner, I resented everyone – I just didn’t want to go through the poking and prodding any more.”    

Infertility treatments also took their toll on Dina’s marriage.

“I think we’re done,” she says. “I need to spend time now working on my relationship with my husband. It was really affected by our IVF journey. Over the past five years we have been trying and trying, and in each try I’m paying from my relationship with my husband. I had feelings of guilt that I couldn’t get pregnant, and then I also felt angry towards my husband that he couldn’t give me the family I’ve always dreamt of. There was just too much negativity in our marriage when we were trying to conceive.

“To accept the fact that we may never become parents is hard, but we have to live with this fact and work on our marriage.”

Medical approaches

Although the fertility industry is big business worldwide, approaches differ from clinic to clinic and country to country.

“In Ireland I was happily given my drugs without follow-up appointments. In Doha I was given fertility drugs straight away but was closely monitored,” says Sarah.

“When we were in England we tried the local health service to see if it would be different. We were put on a six-month waiting list for our first appointment, then had six months of investigations before IVF would even be considered. We found out that one round of IVF would be free on the NHS but the wait was so long.”

Free fertility treatment is offered in England under the NHS. If the woman is aged between 23 and 39 and the couple has been trying for a baby for two years, they are entitled to at least one free cycle of IVF treatment. But this depends on where in the country you live as not all health authorities are able to provide NHS fertility services.

Rezai says: “Private clinics in the UK are becoming more and more selective in offering repeated IVFs depending on age and infertility causations. Some will even offer a form of nutritional supplementation before initiating the process. In some areas of the Middle East the models used are lagging behind their sister models [and are] still dependent on dated medical methods that have proved to be inefficient.

“I have had several patients in Qatar who were fortunate enough to conceive but only after seven to 10 IVF cycles. This would be very unlikely in the West; both because of financial restraint and health issues.”

Amy says she researched IVF in the US but decided against undergoing treatment there: “Not only is it overly expensive but I found they take a somewhat more obsessive approach – I just did not want to be in that system.

“There wasn’t much research out there on the risks of IVF at the time and I wasn’t made aware of any risks by the doctor I saw. But I personally know many women who have gone through IVF and have not had any serious medical issues.”

Amy had her first and only cycle of IVF in Qatar in June 2011.

“I was in a group of five women who were undergoing the same treatment. I clearly remember the day when we had to return to the hospital to find out whether we were pregnant. 

“I was walking in the hallway, passing by to see some of the medical staff who had been treating us, when I was told I was pregnant – and with twins! It was a weird moment as I was extremely happy, but didn’t feel comfortable being told in the hallway in front of some women who hadn’t yet conceived. I had to control my joy. 

Amy and her husband returned to the US as they prepared to move to Saudi Arabia. As she was already pregnant, she was not entitled to health insurance there so had to pay for pre-natal treatment.

“I had heard that after 20 weeks I should go for check-ups every two weeks because I was carrying twins,” she says. “I remember the day clearly – it was November 9, 2011. I went for my 24-week appointment at 9am. I found out my cervix had begun to open. By 4.30pm my twin boys were born premature at six months. Ziyad weighed 700 grams and Adam 800 grams. Two days later we lost Ziyad and on day three we lost our other baby boy, Adam.”

Hannah and Ahmed’s quest for a child led them to the US, Qatar and Jordan. They noticed different approaches in each country.

“Our California-based doctor was interested in finding and exploring less invasive options and starting slow. In Qatar, they wanted to go straight for IVF when there was an alternative; they weren’t willing to consider it. In Jordan, they were open to trying less invasive techniques before suggesting IVF. However, I wasn’t comfortable with their labs and the technique of egg retrieval, and others didn’t sound as good as in the US.

“It was not until I went to a reproductive immunologist in the US that I understood what my condition was and how to treat it.”

Like Amy, Hannah was diagnosed with endometriosis.

“I had surgery and underwent hormone therapy for six months. After which the doctor prescribed Clomid and we conceived that very same month. Sadly, however, the pregnancy naturally terminated at about six weeks. The doctor suggested we wait a few months before trying again, and we did. When we didn’t conceive that month, we decided to seek advice from a reproductive endocrinologist.”

Human need

So, if infertility rates have remained largely the same for the past 20 years, why is the business of treating infertility booming?

Stevens from the WHO says: “I would guess that if treatment centres are increasing, it’s due to improved treatment technologies and infertile couples’ increased ability to pay for these treatments.”

But Jain proffers a different explanation: “Many people are committed to a genetic idea of reproduction: that their own biological child will better reflect their values, goals and biology. With doctors underplaying the dangers of fertility treatments and adoption being a difficult process, especially for gays and lesbians or older people, fertility clinics will prosper.

“We live in a society that values reproduction for its own sake, and so many people need that, they need to have children to feel ‘whole’.”

“Most couples will go to any extent to have a baby,” adds Rezai. “Reproduction and child rearing is an instinctive mechanism within all of us. It is up to the medical community to discuss the risks of conventional methods and perhaps some information about alternatives.” 

Priceless

Sarah and Shaun have spent just over $9,500 on treatments, and have no regret about doing so. “We now have more answers and insight into our fertility issues and options … than we ever had before. For us, a child is worth all the money, time or effort it takes to achieve our dream of a family. I will continue until we get pregnant doing whatever it takes. I still have faith in the doctors; I think I need to keep positive for my own sanity, to let myself believe that I can put my fertility path in someone’s qualified hands.”

Hannah and Ahmed spent around $30,000. She says: “We would do it all again, but I would be more insistent and do more research.” 

But do they still have faith in the fertility experts?  

“I have more faith in God than in the fertility experts. But I think they understand how to use technology to help people conceive. However, if you don’t have a standard case, I believe you’re on your own. I think the answer to your question is no.”

Is IVF the only way?

Rezai thinks there needs to be greater awareness of alternative approaches. She cites The Foresight Institute, which provides pre-conception care. The institute uses nutritional deficiency and heavy metal toxicity screening, among other tests, to form a prescription for health.

“The bonus being,” says Rezai, “that if no child is conceived the couple will be guaranteed better health at the end of the process. Such programmes may even ensure that if the couple does select IVF for conception, the amount of cycles may remain slight compared with their peers because of the superior health.”

She says this is where the focus needs to be placed – and where a void exists in the modern medical approach.

“You need to work on improving the overall health of the couple; the quality of the egg, sperm, ovaries and uterus can definitely be addressed holistically, which in itself may result in natural conception at best and, as a last resort, a higher rate of success with IVF at one or two cycles.”

Hannah and Ahmed’s story has a happy ending. Although they gave up on IVF, they did not give up on wanting a child of their own and are now the proud parents of three-year-old Hasan.

“He was two months old when we met him and I moved to Morocco to take care of him until he was released for adoption. For legal reasons we had to wait three months before taking him home,” says Hannah.

For Dina, after five tries at IVF in the US and the Middle East she now feels rested and refocused. Hisham has suggested one more attempt, but Dina is undecided.

“I’m glad we investigated and tried our best, and since it did not happen then it wasn’t meant to be – maybe there is a greater reason behind this … As much as we want a child it’s really difficult to put my body through all of that again.”

Amy says she would recommend fertility treatment to others hoping to conceive: “That is the only way I had my sons [and] they were a huge blessing in our lives.

“But,” she adds, “I would recommend IVF as a last resort [and would] suggest not getting overwhelmed and caught up in the conceiving process as it can be all-consuming, which is good for no one, especially the couple.”

Amy and Khalid welcomed their daughter Miriam into the world last December. She was conceived without the aid of any fertility treatment.

As for Sarah, she says: “For us the day we stop trying is the day we are told that we have no other options. We will continue down our fertility path, spending every penny we have, until that day comes.”

Some names have been changed to protect privacy.

This article first appeared in the August 2013 issue of the Al Jazeera Magazine.