I was only 23 years old when I was diagnosed with pancreatic cancer.
According to the American Cancer Society, the combined survival rate for all stages of pancreatic cancer is 20 percent after one year and only seven percent after five years. At the time of this article, I’ve just surpassed the four-year mark of survival.
Undergoing treatment at such a young age was remarkably difficult, and my earliest memories of Cleveland after relocating from Chicago are the ones I made looking out of my hospital room window from the Seidman Cancer Center. Cancer ravished my body, my mind, my spirit, and also took away any opportunity I had of birthing biological children. At 23, I wasn’t even sure if children were something that I wanted for my future. But having the option taken away from me is a pain that I struggle with on a daily basis.
On March 4, 2018, the University Hospitals Fertility Center discovered a tragic tank failure that resulted in the loss of roughly 4,000 frozen eggs and embryos, affecting approximately 950 families. As of publication, University Hospitals is facing 117 lawsuits, including class action and individual. The hospital has issued apology letters to affected patients and an apology video from University Hospitals’ CEO Tom Zenty. “I can’t say it any more plainly; we failed our fertility clinic patients. We are sorry. I am sorry. And we are going to do everything we can to regain our patients’ trust,” he said.
As someone who has personally allocated a great deal of trust to University Hospitals, it’s a difficult conundrum to trust the words of a hospital that spectacularly failed nearly 1,000 families that looked toward them for hope and safety while simultaneously recognizing that UH saves countless lives every single day. What happened is an absolute tragedy, but there are larger issues at hand regarding the entire system of egg freezing and fertility treatments.
With the exception of those dealing with cancer, most health insurance companies view fertility treatments as an elective procedure and do not cover the costs. Meaning, people with the ability to produce eggs may pay tens of thousands of dollars in an attempt to conceive. Additionally, there are fees — hundreds or thousands of dollars each year — to store these frozen eggs and embryos until a patient is ready for them to be used.
Fertility treatments aren’t just ridiculously expensive and emotionally draining, there’s also no guarantee of conception. For those under 35, there’s only a 60 percent chance of pregnancy per transfer. The unfortunate reality is that for some of these families, those frozen eggs or embryos were their only chance at having biological children. I know what it feels like to be told any chance you once had at birthing a child is impossible, and it’s not a good one. Speaking as a cancer patient, many don't discover fertility issues until after it's too late to pursue cryopreservation. The sad realization is that those impacted by this catastrophe are individuals who did everything they could to ensure a successful future family.
Dov Fox, the Director of the Center for Health Law Policy and Bioethics at the University of San Diego, is working with one of the plaintiffs in the case against UH. He told NBC News
: "There is almost no regulation or oversight of any kind that relates directly to the prevention of mistakes like these. And it's not just fertility clinics; it's sperm banks, egg vendors, surrogacy agencies, in all these areas, we don't know how common the mistakes are, because there is no reporting, no tracking agencies."
The fertility center has offered to pay for treatments for any patients who want them, but this feels like slapping a band-aid over a bullet wound. This fertility failure didn’t just fail the families of Cleveland, but families all over the country. Cleveland is one of the greatest places in the world for medical treatment, and there’s a sense of betrayal lingering over anyone who may need the services of the fertility center in the future. There's a possibility that many may now forego fertility treatments and elect to pursue high-risk pregnancies. Cancer patients may hold off on life saving treatment in order to start a family, and some may continue the devastatingly heartbreaking experience of unsuccessful conception now that scientific intervention is something they cannot trust.
There’s been a lot of talk about lawsuits, memorial benches for the lost embryos, and monetary compensation for those affected by the incident, but there’s been little discussion about what to do moving forward. How do we ensure this doesn’t happen again? Why aren’t we keeping track of how often this happens? Why isn’t there anyone overseeing the standards and procedures of fertility clinics? Why do insurance companies consider fertility treatments an elective procedure while accessibility to a safe and legal abortion is treated like a political bargaining chip? The relationship a patient has with their doctor is one that is based on hope and trust. We hope that our doctors will do what’s best for us, and we trust that they’ll be able to help to the best of their ability. The University Hospitals fertility center failed their patients, and rebuilding that trust is going to be extremely difficult.
Stricter regulations and standards are necessary, closer and more attentive means of monitoring should be required, and more affordable treatment options should become available. While many of these families have lost the ability to bring biological children into this world, hopefully the love they have in their hearts can be shifted towards a child brought into their lives by adoption. A woman is not defined by her ability to conceive a child, just as a fulfilling life is not defined by having a child. But the people hurt by the freezer failure had all sacrificed time, money, and emotional labor in an attempt to one day have a biological child. If there’s any silver lining to be found in this incident, it’s that hopefully a massive change in the fertilization industry is soon to follow suit. I can only hope that once the initial pain and anger subsides, that tangible and actionable change by the University Hospitals Fertility Center occurs.