San Francisco Chronicle - (Sunday)
IVF security a problem long before Alabama
I risked my life to freeze my eggs.
In 1999, I was a 22-year-old college graduate who, a day after running my first marathon, was told by my doctor that the painful and mysterious sore that had appeared on my tongue wasn’t an allergic reaction to chocolate or a cold sore. It was cancer.
Saving my life required multiple rounds of surgery, radiation and chemotherapy. My medical team was focused on the temporary side effects like hair loss, nausea and vomiting.
My biggest concern was a permanent one: infertility. My oncologist didn’t even mention this risk. When I finally raised the issue, he reacted with incredulity that I would even consider delaying treatment to get my eggs retrieved and saved.
My response: “If I can’t be a mother, I don’t want to live.”
So I refused cancer care in the name of motherhood and spent weeks trying to figure out a solution. Crazy to some, but that was how I felt (and research has since shown that many women feel the same and make the same decision.)
I called dozens of fertility clinics around the country and quickly learned that no one was freezing eggs. I finally discovered that Stanford Medical Center had just received approval to start an experimental egg-freezing protocol for cancer patients — among the first in the nation.
I went to my first fertility appointment alone and brought home a bag of powerful and mysterious powders and potions. I dumped the contents on my parents’ kitchen table and sat down to tackle the lengthy instructions about how to mix one with the other. These were the early days of egg freezing, and I felt like a pioneer assembling a life from a kit even more inscrutable than the most complicated Ikea box. I ended up having to recruit my parents and friends to give me the injections — I couldn’t bear to jab myself.
I had fertility doctor appointments almost every day — and loved it. I wasn’t hoping or dreaming about a life with love and children and laughter. I was making it happen — shot by shot. It was a rollercoaster of emotions in the best kind of way.
Two weeks later, I had 28 eggs safely stored. Shortly afterward, I was in the chemo infusion clinic with needles in my arm alongside several other young people doing the same.
I had to ask: “Did you freeze your sperm?” To another: “Did you freeze your eggs?”
Their horrified looks told me their answers — expressions I still see in my dreams. The experience led me to start a nonprofit to change the standard of care in both cancer and reproductive health so that cancer patients are informed of their risks and have access to fertility preservation treatments.
Thanks to the efforts of countless advocates, it is now considered malpractice if cancer patients are not informed.
In the decades since my experience, egg freezing has gone from experimental to standard practice, from being offered only to cancer patients to being offered to everyone. It also accelerated the adoption of a “fastfreeze” technology called vitrification, which dramatically increased success rates. Both developments led to an explosion in egg and embryo freezing.
But in the wake of the recent Alabama Supreme Court ruling — which determined frozen embryos can be considered children under state law — millions of people like me around the country are understandably worried about the ramifications of the ruling. Will the embryos they froze be legally protected?
But there’s another question around safety that hardly anyone is talking about — their physical safety.
The underlying facts of the Alabama case are disturbing — a hospital patient was allowed to wander into a fertility clinic’s storage room, open up the freezers, remove frozen embryos from their liquid nitrogen baths and destroy them. And although the Alabama case is extreme, it is not an isolated incident. Every month, it seems, a new story is released about a rare, extreme event.
A crucial supplier to the in vitro fertilization industry is the subject of a growing number of lawsuits claiming a cell culture medium that keeps embryos alive is defective and causes embryos to be unviable. A large fertility clinic chain was recently accused in a published report of exposing countless eggs and embryos to unsafe conditions. A doctor in Washington was caught using his sperm to impregnate his patients.
In 2018, clinics in San Francisco and Cleveland suffered major tank failures that destroyed thousands of eggs and embryos. My friends and fellow cancer survivors in the Bay Area lost eggs and embryos, which for many were their only hope of achieving parenthood.
There seem to be countless cases of lost embryos and embryo mix-ups, including one in which two women in California ended up exchanging infants after realizing they’d given birth to the other’s child.
It is becoming such a common media story that my daughter, knowing she was once a frozen embryo, recently asked me, “Do you know if I’m really yours?”
One can’t help but wonder who is overseeing all of this.
The Food and Drug Administration regulates the handling and storage of human tissues, but IVF labs are exempt from its rules. The Centers for Disease Control and Prevention and the Society for Assisted Reproductive Technology track cycles and success rates, but not errors. The American Society for Reproductive Medicine has practice guidelines on storage, but they are unenforceable.
The answer, it seems, is no one.
More than a million eggs and embryos are frozen in the United States each year — some short-term, some for decades. After paying tens of thousands of dollars for fertility treatments, patients pay hundreds of dollars every year for safe, secure storage for their precious cells.
Like me, they are now desperate for reassurance that their most cherished hopes and dreams are safe within those frozen vials.
What do we tell them?