Fertility Clinic Courts Controversy with Treatment that Recharges Eggs- Rob Stein

Fertility Clinic Courts Controversy With Treatment That Recharges Eggs
By ROB STEIN • MAR 5, 2015

Along with sperm, the in vitro procedure adds fresh mitochondria extracted from less mature cells in the same woman’s ovaries. The hope is to revitalize older eggs with these extra “batteries.” But the FDA still wants proof that the technique works and is safe.
Along with sperm, the in vitro procedure adds fresh mitochondria extracted from less mature cells in the same woman’s ovaries. The hope is to revitalize older eggs with these extra “batteries.” But the FDA still wants proof that the technique works and is safe.

Melissa and her husband started trying to have a baby right after they got married. But nothing was happening. So they went to a fertility clinic and tried round after round of everything the doctors had to offer. Nothing worked.

“They basically told me, ‘You know, you have no chance of getting pregnant,’ ” says Melissa, who asked to be identified only by her first name to protect her privacy.

But Melissa, 30, who lives in Ontario, Canada, didn’t give up. She switched clinics and kept trying. She got pregnant once, but that ended in a miscarriage.

“You just feel like your body’s letting you down. And you don’t know why and you don’t know what you can do to fix that,” she says. “It’s just devastating.”

Melissa thought it was hopeless. Then her doctor called again. This time he asked if she’d be interested in trying something new. She and her husband hesitated at first.

“We eventually decided that we should give it one last shot,” she says.

Her doctor is Dr. Robert Casper, the reproductive endocrinologist who runs the Toronto Center for Advanced Reproductive Technology. He has started to offer women a fertility treatment that’s not available in the United States, at least not yet. The technique was named Augment by the company that developed it, and its aim is to help women who have been unable to get pregnant because their eggs aren’t as fresh as they once were.

Casper likens these eggs to a flashlight that just needs new batteries.

“Like a flashlight sitting on a shelf in a closet for 38 years, there really isn’t anything wrong with the flashlight,” he says. “But it doesn’t work when you try to turn it on because the batteries have run down. And we think that’s very similar to what’s happening physiologically in women as they get into their 30s.”

In human eggs, as in all cells, the tiny structures that work like batteries are called mitochondria. Augment is designed to replace that lost energy, using fresh mitochondria from immature egg cells that have been extracted from the same woman’s ovaries.

“The idea was to get mitochondria from these cells to try to, sort of, replace the batteries in these eggs,” Casper says.

Here’s how it works. A woman trying to get pregnant goes through a surgical procedure to remove a small piece of her ovary, so that doctors can extract mitochondria from the immature egg cells. In a separate procedure, doctors remove some of the woman’s mature eggs from her ovaries. They then inject the young mitochondria into the eggs in the lab, along with sperm from the woman’s partner; except for adding mitochondria to the mix, the process is the same one that’s followed with standard in vitro fertilization. The resulting embryo can then be transferred into her womb.

The extracted mitochondria “look exactly like egg mitochondria,” Casper says. “And they’re young. They haven’t been subjected to mutations and other problems.”

So they should have enough power to create a healthy embryo, he says — at least in theory. The company that developed the procedure, OvaScience Inc. of Cambridge, Mass., has reported no births from the procedure so far. The technique adds about $25,000 to the cost of a typical IVF cycle.

OvaScience hopes to eventually bring the technique to infertile couples in the United States. But the Food and Drug Administration has blocked that effort — pending proof that the technique works and is safe. Meanwhile, the firm is already offering the technology in other countries, including the United Arab Emirates, Turkey — and in Canada, at Casper’s Toronto clinic.

“We’re pretty excited about it,” Casper says.

Not everyone in Canada is excited about it. Endocrinologist Neal Mahutte, who heads the Canadian Fertility and Andrology Society, notes that no one knows whether the technique works. And he has many other questions.

“It’s a very promising, very novel technique,” he says. “It may one day be shown to be of tremendous benefit. But when you amp up the energy in the egg, how much do we really know about the safety of what will follow?”

“Is there a chance that the increased energy source could contribute later to birth defects?” Mahutte wonders. “Or to disorders such as diabetes? Or to problems like cancer? We certainly hope that it would not. But nobody knows at this point.”

He and some other experts say it’s unethical to offer the procedure to women before those questions have been answered.

“There are processes that are set up to ensure that products which are offered for clinical use in humans have undergone rigorous testing for safety and efficacy, based on well-established scientific and ethical testing criteria,” says Ubaka Ogbogu, a bioethicist and health law expert at the University of Alberta. “To circumvent this process is to use humans as guinea pigs for a product that may have serious safety concerns or problems.”

Casper defends his decision to offer his patients the treatment, saying a New Jersey fertility clinic briefly tried something similar more than 15 years ago; in that case, he says, the resulting babies seemed fine, and there have been no reports of problems since. In addition, Casper says he has done a fair amount of research on mitochondria.

“I think there’s very little chance that there would be any pathological or abnormal results,” he says. “So I feel pretty confident this is not going to do any harm.”

Casper’s first patient to try the technique — Melissa — says she’s comfortable relying on the doctor’s judgment.

“I think there’s always risk with doing any sort of procedure,” Melissa says. “IVF — I mean, there was lots of controversy and risk when that first came out. For me, and from what I’ve discussed with my doctor, I don’t see it being a big risk to us.”

And she’s thrilled by the outcome so far: She’s pregnant with twins.

“You know, I couldn’t believe it,” she says. “I still don’t believe it a lot of the time. There are no words for it — it’s incredible. We’re very excited.”

Casper says 60 women have signed up for Augment at his clinic. He has treated 20 of the women, producing eight pregnancies, he says. The first births — Melissa’s twins — are due in August.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.

When your sister keeps having kids, and you can’t- Kveller

My little sister was born when I was 3 years old. We grew up really close, and shared everything. Toys,friends, even the chicken pox. Throughout the years, she always wanted to do everything I did–when shewas in preschool she would sit at the dining room table while I was doing my homework, and my motherwould have to give her an assignment too. One time she even took my practice spelling test, and I think she did better on it than I did!
As we got older, and figured out our own directions, our lives were still similar in a lot of ways. We went tothe same college, got married within six months of each other, and started talking about expanding ourfamilies right around the same time. I envisioned holidays, birthday parties, and backyard BBQs, with bothof us having little ones running around together. Just about six months after my husband and I started
trying, my sister announced that she was pregnant. I was so happy for her, and figured I would be next.
Her child would be a few months older than mine, but that was OK.

My nephew was born in November 2006, two months premature, small but healthy. He was adorable, and
I loved being an aunt. The only problem–I still wasn’t pregnant. And I wasn’t pregnant a year and half later,when my sister told me that she was pregnant again. My second nephew was born in February of 2009,after I had gone through three rounds of IUI, found out I had thyroid cancer, and put conceiving on hold for surgery and radioactive iodine treatment. In 2010, I completed my first round of (unsuccessful) IVF, and
was beginning to lose hope of ever becoming a mom.
During the next five years, I watched my nephews grow. The family holidays, birthday parties, and BBQs all happened, but I was always the aunt. My husband loved playing with the boys, letting them climb allover him and throwing balls to them in backyard baseball games. As much as watching him with them made me smile, it always hurt too, because he wanted so much to be a dad. Over this time period, we pursued adoption for a few years, found a new reproductive endocrinologist, and went through four more
rounds of IVF (including one that was initially successful, but we lost our baby boy at25 weeks gestation when I developed early onset preeclampsia). Each time something didn’t work, I would think I was done; Ijust couldn’t emotionally go through another procedure, another let down, another failure. And then Iwould watch my little sister with her children, put on my brave face, and figure out what was next.

From the time my little sister was born, I think I was her inspiration. She always wanted to be just like me.
The last nine years, I have wanted to be just like her. She has been there for me every step of the way,always asking what I needed, what she could do, how she could make it better. I think she may have been more excited than I was this past fall, when we found out that the latest round of IVF worked, and that Iwas pregnant. As I approach week 32 ina so far healthy pregnancy, I know that my sister will be an inspiration to my daughter when she arrives in eight short weeks. I can’t wait to call her Aunt.

Last night I posted a status message on Facebook about which I have long daydreamed–an
announcement that my sister is pregnant and that God willing, within the next eight weeks, I will become an aunt. This announcement was nine years in the making. Nine years of watching my older sister and brother-in-law struggle with infertility, face unimaginable tragedies, and yet somehow inspiringly pick themselves up again and again to pursue their dream of becoming parents.
During their long and emotional journey, I, the younger sister, gave birth to two sons, now ages 8 and 6.And though these births were certainly not without their complications, I conceived easily and when I wanted to both times–something that I likely would have taken for granted if my experience hadn’t been juxtaposed by that of my sister.

This juxtaposition reminds me of the words of Israeli poet, Yehuda Amichai, “A man doesn’t have time in his life to have time for everything…a man needs to love and hate at the same moment, to laugh and cry with the same eyes.” When laughing with my own children, there was often a part of me that was crying for my sister–because she couldn’t laugh with children of her own.
This story is far more my sister’s to tell than mine, and I know that whatever emotions I felt, she felt at least tenfold, but it’s also important to acknowledge infertility’s ripple effect throughout an entire family. As I watched my sister struggle, I felt many things: guilt, anger, confusion, inability to understand–but the two
feelings that I came back to again and again were sadness and helplessness. It is terrible to watch someone you love go through such hardship for so long and not be able to do much to fix it. I used to daydream solutions that in hindsight were pretty ridiculous–my husband and I would have another child and give it to them; I would carry her child for her, despite the fact that my own two pregnancies ended
prematurely and with pretty serious risks for both me and my children. I wanted so badly to change her situation, yet there was really very little I could do.

I sat in shul each Rosh Hashanah and prayed to God that this be the year that brings them a child. At each Mother’s Day brunch with my family–that my sister somehow had the strength be at with a smile on her face and her camera at the ready (without her, I would have far fewer pictures of my kids)–I hoped that next year, it would be her holiday as well. Sometimes I would get jealous when I saw pictures of my friends’ kids on Facebook hanging out with their cousins. If I felt this way, I can only imagine how much
worse it was for my sister and brother-in-law.
I hope that I have been sensitive; I don’t know if I always was. I tried not to talk about my kids all the time or complain of sleepless nights, but I’m sure that there must have been moments when I said the wrong thing. Over the past eight years, my sister and brother-in-law have been an incredibly loving aunt and uncle to my children–coming to the hospital when they were born, buying gifts for them, delighting in their
milestones, playing with them, and babysitting for them–all things that I imagine were not easy, and yet they did them, out of love for me and for my children. For that, I will always be grateful.
For now, our entire family looks forward to welcoming a very special baby girl who will be loved beyond words. And I look forward to discovering a new aspect of my relationship with my sister, one where we can share the joys (and challenges) of motherhood and where, together, our eyes can laugh without being
tempered by tears.

Open talk about Miscarriage- National Post

Open talk about miscarriages, infertility, IVF breaking last taboo around female fertility

Sarah Boesveld | May 2, 2015 12:50 AM ET
More from Sarah Boesveld | @sarahboesveld

“Women come in the morning: give blood, have ultrasounds, get injections. And then to work, silent on the early violations of their day.”

With that tweet, from a Toronto fertility clinic last week, Siri Agrell delivered a rare, raw description of what it’s like to pursue in vitro fertilization.

Her posts reveal an often closeted world: of awkward run-ins with colleagues and acquaintances, of stacks of porn for men making “contributions,” of fellow patients dealing with multiple traumas (one woman she describes is harvesting her eggs before cancer treatments render her infertile) and loaded moments, like holding her young son “like a shiny gold star” the day she had to bring him with her.

And Agrell’s tweets quickly reverberated beyond Twitter, lauded as an act of courage and an audacious pushback against societal taboos.

Because even in a culture that idealizes pregnancy, and where social media is flooded with intimate details from ultrasound images of fetuses on Facebook to growing baby bumps, there is a still caution around revealing the full, and sometimes painful, experience of reproduction. Sixteen percent of couples struggle with infertility. Fifteen percent of pregnancies end in miscarriage. Other women make wrenching decisions about how to handle pregnancies with major complications.

“Like many women, I’ve spent a lot of my life listening to other people discuss women’s choices and their right to make them,” says Agrell. “I think some of us are [now] saying, ‘Okay, if you want to tell me what you think about my decisions, let’s talk frankly about the experiences that led me there.’”

Agrell believes we’re on the cusp of a shift in how we talk about infertility and loss. Emma Hansen, for example, a Vancouver model and daughter of wheelchair athlete Rick Hansen, recently wrote a heart-wrenching blog post about giving birth to her stillborn son. And there are formal campaigns to break the silence around reproductive issues: In the United States, the Center for Reproductive Rights is promoting women’s personal stories to keep states from passing laws that will restrict access to abortion and contraception; as they prepare for Infertility Awareness Week later this month, IVF advocates in Canada are encouraging those who’ve been through fertility treatments to speak out.

Jill Colpitts

Jill ColpittsA photo from Emma Hansen’s blog about her still born child.

But for all the women who want to share what they’ve been through – the grief, the physical and psychological stress, the pain and hopeful determination, the difficulty of fielding well-meaning questions that cut like a knife – many prefer to deal with their experiences in private. In reporting this story, the National Post heard from a dozen Canadian women who have experienced infertility or pregnancy loss. Most of them wanted to tell their stories – but without their names attached.

Danielle, a twentysomething professional in Alberta has miscarried twice, the second time because of a ruptured ectopic pregnancy that saw her lose a litre and a half of blood. The first time she didn’t even tell her parents. And some of her friends still don’t know what she’s gone through.

“Pregnancy is really romanticized,” she says. “It’s a miracle, it’s a gift. And so if you’re not capable of being pregnant or you can’t keep your pregnancy, what does this mean for you? That you’re cursed?

“It makes people who’ve been through it feel like they can’t talk about it because there’s this voodoo superstition around fertility: ‘If you just relax, it’ll happen for you’ or ‘This wasn’t the time,’ ‘It wasn’t meant to be.’ It’s said with the best of intentions but there’s a sincere lack of empathy behind it.”

“I’m a hypocrite for being angry because if people had talked about it, I maybe wouldn’t have felt that shame and that brokenness,” she says. “But at the same time I wasn’t willing to talk.” Not discussing it helped protect her from pain.

Fotolia

Fotolia“When it comes to infertility and pregnancy loss nobody knows what to say, nobody knows how to handle it.”

Even Agrell, a communications strategist and former reporter (and, full disclosure, a friend) thought carefully before dispatching tweets from the waiting room of her fertility clinic last Thursday. She wrote them the night before and showed her husband, after all, “it’s his story too,” she says.

The couple had one healthy child. But at 21 weeks, Agrell’s second pregnancy ultrasound revealed a severe genetic condition called osteogenesis imperfecta, which prevents bones from forming correctly and in this case was “incompatible with life.”

Rather than be induced and deliver a stillborn, the couple chose to have a termination the following week. They conceived again a few months later and delivered another healthy child. But Agrell later suffered damage to her uterus that makes it impossible to conceive naturally, which led her to pursue a round of IVF.

“Both with this and when we had our loss, you realize how many people it’s happened to,” she says. “No one talks about it until you say ‘Hey, this thing happened to me.’ Then the floodgates open.”

‘We need to recognize that pregnancy’s not an accessory – it’s a process. And it’s not a process that always goes well for people’

In the hours and days after sending out her tweets, she heard from people who hadn’t talked about their experience with anyone.

Toronto infertility and pregnancy loss counsellor Erica Berman sees a lot of people suffering in silence and feeling immense shame about what they’re going through.

“Culturally speaking, we’re obsessed with fertility and we think it’s fodder for the public to talk about women’s bodies … [we feel] we can give pregnant women judgment about what they should and shouldn’t do,” she says. “But when it comes to infertility and pregnancy loss nobody knows what to say, nobody knows how to handle it.”

That means women who do talk about it can open themselves up to well-meaning but misguided comments.

“There is the occasional person that says something a little hurtful, like, ‘It happens to a lot of people,’” says one Mississauga woman, a 31-year-old accountant, who miscarried at 10 weeks. “I didn’t know why that bothered me, and then I read somewhere that it’s like saying to someone [mourning a death from a car accident or cancer], ‘Oh, it’s really common.’ You would never say that.”

But because it doesn’t conform with our expectations about what is “natural” or “normal,” infertility and loss are hard to understand unless you’ve been there, says Berman, who has experienced it herself. It feels like “you’re struggling for oxygen … It’s that primal.” And not being able to fulfill a vision of a family for yourself can also lead to deep grief.

Thinkstock

ThinkstockEven in a culture where social media is flooded with intimate details from ultrasound images of fetuses on Facebook to growing baby bumps, there is a still caution around revealing the full, experience of reproduction.

“I see, regularly, people who are extremely upset all the way to clinically depressed and anxious, dealing with suicidal ideation, feeling they have no reason to live,” she says. “That even happens to women dealing with secondary infertility, when they already have a child.”

Danielle describes her losses as an incredibly “isolating” experiences.

“And to talk about it to people, that the thing that everybody should be able to do you can’t and to talk about the loss, I couldn’t do it,” she says. “Especially the longer it went after the losses, the harder it got to talk about. … I didn’t want the pity.”

Motherhood is still seen as the most important role in a woman’s life and the inability to fulfill that role is still thought of as a failure, says Glenda Wall, a professor of sociology at Wilfrid Laurier University in Waterloo, Ont. And thanks to our risk-averse culture, women often blame themselves when things go wrong. The three-month code of silence around a pregnancy is meant to protect people from the pain and awkwardness of discussing a miscarriage, she says.

Agrell considers that code to be “old fashioned,” she tweeted.

The problem, she says, is not what we share but that, as she puts it: “We’re bad at taking on each other’s pain.”

But she does believe that is changing.

“We just need to think about the messages we send to people when we use certain words or when we ask certain questions,” she says. “And we need to recognize that pregnancy’s not an accessory – it’s a process. And it’s not a process that always goes well for people.”

Agrell believes that talking more openly about reproductive issues would help counter dangerous misinformation and stigma around fertility, loss and abortion.

Of course people should not feel pressured to discuss something so personal and painful, but they should know, she says, that there is a choice.

“They should recognize there’s an environment in which they can if they want to and when they’re ready to.

“I couldn’t have talked about this two years ago, I couldn’t have talked about it out loud. But now I’m in a place where I’m reconciled with what’s going on.”

National Post