VOL. 42 | NO. 8 | Friday, February 23, 2018
High costs, hurdles of overcoming infertility
By Vicky Travis
Brandon and Kara Edwards founded Starfish Infertility Foundation to help others pay for treatments. Shown here in 2016, they are the parents of Braxton and Bexleigh, now 4 ½ years old. -- Submitted Photograph By Ashlee V Photography
The dream seems straightforward enough. Couples work on careers, find a place to call home and have children.
But for one in eight couples, the least controllable part of that plan – having children – is a struggle.
After about eight months to a year of trying to conceive without success, many couples start testing to rule out or discover problems. Endometriosis, low sperm count, blocked fallopian tubes, antibodies to sperm, ovulation issues and more start the lengthy list of possible causes. And, in about 15 percent of couples, no cause can be identified.
Treatments at fertility clinics may start with the least expensive and least invasive, such as medicines to increase the release of eggs. A next step may be intrauterine insemination, or IUI (indelicately referred to as the “turkey baster.”) In vitro fertilization, which, including medication, can cost $10,000 to $15,000 per cycle, may follow.
The road for these couples can be extremely expensive as most treatments are not covered by insurance. The journey can be misunderstood by well-meaning family and friends, remains a roller coaster of emotion and physical trauma, and is often isolating and all-consuming. Yet, the couples keep on for the hope of bringing a life into the world.
A long journey
Married in 2009, Brandon and Kara Edwards of Old Hickory started immediately trying for a family and assumed it would happen right away. Why wouldn’t it?
In their 30s, their journey to pregnancy would take 3 years, more than $110,000 in out-of-pocket expenses, countless rounds of fertility drugs, four IUI procedures and four IVF procedures.
Their twins, Braxton and Bexleigh, were born in 2013.
“We never gave up and we never lost faith,” Kara Edwards says.
During those trying years, she let very few people know the details and the constant ups and downs of dealing with infertility. Now, though, she’s an open book and shares their story in hopes of helping others deal with it.
For information on infertility, Dr. Christine Whitworth of the Nashville Fertility Center recommends Rebecca Fett’s book, “It Starts with The Egg.’’
Online resources abound. The non-profit charitable organization Resolve.org helps connect people dealing with infertility and helps educate. Other resources include the American Society for Reproductive Medicine at www.reproductivefacts.org and Infertility Resources at www.ihr.com/infertility.
Local resources include Nashville Fertility Center at www.nashvillefertility.com, the Center for Reproductive Health at www.nashvillefertilitycare.com and Tennessee Fertility Institute at www.tnfertility.com.
About a year after their twins were born, the couple started the Starfish Infertility Foundation to help other couples pay for infertility treatments.
Fertility is a $3 billion to $4 billion industry, according to an analysis by Harris Williams & Co. with 4 percent annual growth predicted.
The average cost of an IVF cycle in America is $12,400, according to the American Society of Reproductive Medicine, and its success is not guaranteed. In June 2017, delegates at the annual American Medical Association meeting adopted a resolution by ASRM to follow the World Health Organization to designate infertility as a disease.
ASRM said that declaration could impact how patients, society and importantly, insurers, act in regard to infertility.
Insurance in Tennessee?
Right now, only 15 states require insurance coverage for infertility treatment, and those laws vary widely. Tennessee is not one of them.
“It’s not considered something insurance would normally cover,” explains Christine Whitworth, M.D. at the Nashville Fertility Center.
In Tennessee, she adds, most insurance will cover diagnostic procedures but not treatment. Exceptions include treatment of endometriosis, which is a condition in which tissue that normally lines the inside of the uterus grows outside of it.
“And the vast majority, or 75 percent of the time, we find a medical reason why people aren’t getting pregnant,” she continues.
“Insurance won’t cover in vitro and insemination,” Whitworth adds. “There has been a lot of push by the general public for coverage. Things have improved and some insurances will cover different levels, but it’s less common for a patient to have coverage.
Paul and Abbey Watkins gave birth to twin boys, Gus and Pate, in May 2017 after four years of infertility treatments. -- Submitted
“But we think of it as a basic human right.”
Treatments are considered elective by many insurers.
“I asked my insurer, ‘So, if I electively smoke my whole life, you’ll cover my lung cancer?” Edwards recalls. Short answer: Yes.
“They think it’s like plastic surgery,” adds Abbey Watkins. “I’m not sure how much insurance should cover, but it should be considered medical.
“We were blessed to have some savings and parents to help us out or we would have had to give up the dream of having our own child.”
Paul and Abbey Watkins of Nashville delivered twin boys last year.
Abbey, a first-grade teacher, was 25 when the couple decided to start trying for a baby four years into their marriage.
After a year of trying, they, too, took fertility drugs and had four IUIs. She also had surgery for mild endometriosis, which was partially covered by insurance.
During the IVF process, she found also she had antibodies to sperm, which meant that sperm had to be injected into the egg to have a chance.
The Watkins’ used their savings and gifts from family to fund their efforts and applied for a Starfish Infertility Foundation grant, which they received in 2016. The $5,000 grant ended up paying for the fertility shots during their first IVF, which failed. Their second IVF was successful, and their twins, Gus and Pate, were born May 2, 2017.
“It made me trust the Lord more,” explains Watkins of the journey to parenthood. “We wanted to put it in God’s hands and kept asking, ‘Should we still do this?’ It was a hard, big decision. It has just made me grateful and thankful.”
“Why not just adopt?”
If we could make a list of things not to say to couples dealing with infertility, this might be No. 1. Would that be a question for couples who have conceived easily?
“No one understands,” Edwards points out. “Just adopt, they’d say. I couldn’t take it. People act like it’s like going to Target. For me, it’s not what I could think about at that point.”
“I heard so many people say it, not toward me, but just talking about it,” says Watkins, who kept her infertility journey pretty quiet. “You don’t know what it feels like. And we want to have a baby together. It’s a natural desire.”
The process can be emotionally, mentally and physically draining.
“For many of them, it’s the first time they feel out of control,” explains Whitworth about the couples she works with. “We make a plan with them, give them options so they can make a choice.”
“When you see all your friends pregnant, you want to celebrate with them, but it’s like a knife to the heart, and all you think is ‘What’s wrong with me?’” Watkins adds.
She remembers that the day she found out her fourth IUI didn’t work she went to baby shower for a friend, who knew. Watkins cried at the shower, but assured her friend, who had gotten pregnant with IVF, that this gave her hope.
“A lot of their friends might say, ‘Quit thinking about it, just relax,’” Whitworth says. “We encourage our patients to know that the heart behind what they’re saying is good. They’re trying. But then, yes, essentially ignore what they’re saying.”
“Instead of interrogating, we would encourage people to approach the subject empathetically,” Whitworth notes. “Say, ‘Wow, that’s so hard,’ or ‘That’s not what I would wish for you.’”
Being ‘open about it’
Matt Dudney and Christy Sutherland of Ashland City shared their nearly 10-year struggle to conceive with numerous Christian music audiences on Sutherland’s tours. She has had 11 IUIs, two surgeries for endometriosis, three IVFs and two miscarriages, one of them after an IVF and the other when they actually got pregnant on their own.
Along with the “just relax” advice, Sutherland laughed that she had also been encouraged to stand on her head after intercourse. Really.
“But I love that we’ve been open about it,” she says. “We’ve had such an outpouring of love and people around the world praying for us. That’s why I kept hope and faith.”
While some may be very open about their struggles, others just can’t talk about it.
“Maybe five people knew what we were doing,” Edwards explains. But she found an online forum through a fertility clinic in Colorado, where she would eventually have IVF success. “This group of women, they are my mafia,” she said. “I could not have gotten through without them. They had the same failures, the same emotions, everything. Having that outlet was amazing to me.”
Now, Edwards, through her Starfish Infertility Foundation, hears stories and willingly shares her own. “There’s no question now that’s invasive,” she says.
Watkins, too, had shared with just a few friends and family. “I asked Kara a lot of questions,” she adds. She also found comfort in YouTube videos of women sharing their experiences.
Since, she has supported a close friend and a family member in the process. “It’s funny how you find out how many people are going through this,” Watkins says.
Sutherland, 44, had her third IVF with a donor embryo last July. When couples have extra embryos through the IVF process, they may choose to anonymously donate them.
At the time, Sutherland felt really good about the process. “God is going to do what He’s going to do,” she said last year. “All the pathways are open.”
The couple is expecting a baby boy in April.
Research continues to increase the chances for infertile couples to realize their dream of a family.
Genetic testing of embryos that can be used to predict whether an embryo will survive the implantation is a breakthrough that is becoming more common. It’s also something that adds expense to the IVF process.
“We used to do a nine-chromosome study,” Whitworth says. “Now we can check all 23 pairs.
“In the last few years genetic testing has become much more common around the country and we’ve been using it for last 3-5 years.’’
That means viable embryos increase chances for pregnancy to 60 percent to 70 percent, she says. When checking just 9 chromosomes, pregnancy chances are 40 percent to 45 percent.