Bizarre Coincidence Sparks Oncofertility Conversations

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Following fertility clinic malfunctions in Cleveland and San Francisco, many patients who have or had cancer are facing devastating losses, leaving many questions in the wake of these events.

Cancer diagnostics and treatment continue to improve, as does survivorship. But despite these advances, treatment regimens like chemotherapy and radiation may result in the loss of fertility among men and women being treated for cancer.

For example, in women, certain therapies can cause ovarian damage or failure, early menopause and genetic damage to growing eggs and other reproductive problems; while men may face damage to the testes and interference with sperm production.

However, increased demand, coupled with advancing technology, has enabled fertility preservation to come a long way since its inception in the 1970s. Therefore, patients with newly diagnosed cancer have turned to fertility preservation, also called oncofertility.

“Increases in survivorship have driven a focus toward quality of life and late effects … and forced the oncology community to look at what is going to happen long term,” Joyce Reinecke, J.D., Executive Director of the Alliance for Fertility Preservation, said in an interview with CURE. “That has absolutely driven this need for fertility preservation and intervention, and better discussions about subsequent reproductive health.”

Given the intensity surrounding these decisions and their associated costs, it is important for patients and their health care teams to have in-depth conversations about the process, as well as its associated risks.

In an unfortunate string of events, some patients who either have or had cancer and decided to preserve their reproductive specimen in the Cleveland and San Francisco areas may be facing such risks, highlighting even further the importance of these discussions.

Unfortunate Coincidence

News recently broke of two fertility clinics that were forced to inform men and women of equipment failures that occurred at the same time — thousands of miles apart from one another. In turn, these technological failures resulted in the loss of thousands of frozen eggs and embryos.

During the weekend of March 3-4 at University Hospitals Fertility Center in Cleveland, an unexplained storage tank malfunction caused temperatures to rise in the tank, and at the time, an estimated 2,000 eggs and embryos may have been damaged or destroyed.

Since, University Hospitals Fertility Center has upped that estimate to 4,000 lost eggs and embryos. In a letter to those affected by the malfunction, CEO Thomas F. Zenty III, President Patricia M. DePompei, RN, MSN, and Division Chief James M. Goldfarb, M.D., reported that 950 patients were affected by the failure of this storage tank, noting they were, “heartbroken to tell (the patients) that it’s unlikely any are viable.”

As for the cause, the group could only confirm that the remote alarm system on the tank — designed to alert a clinic employee to changes like temperature swings – was, in fact, off. In addition, they recognized that the center was aware of the fact that the tank needed preventative maintenance, and that a manual fill process of the liquid nitrogen may have also contributed to the malfunction.

The executives apologized to patients in the letter, saying that “these failures should not have happened, we take responsibility for them — and we are so sorry that our failures caused such a devastating loss for you.”

Meanwhile, during a routine inspection on March 4, at the Pacific Fertility Clinic in San Francisco, a cryo-storage tank lost liquid nitrogen for a brief period of time. Reports say the tank was immediately replenished and the embryos were later transferred to a new tank.

Following the malfunction, several hundred patients whose eggs and embryos were stored in that specific tank were informed of the event. Some were told their reproductive specimen had been destroyed, while others were still lucky enough to have viable tissue. According to the lawsuit, thousands of frozen eggs and embryos were destroyed, however, the fertility center has not confirmed this number.

Both the Cleveland and San Francisco fertility clinics have each been served with separate class-action lawsuits.

Although highly unfortunate, Reinecke stressed that events like these are also very rare. “It’s such a highly unusual occurrence. So, I would hope that this wouldn’t scare people away from the technology,” she added.

What to Know

The most common malignancies requiring treatment that may affect fertility include lymphoma, leukemia, sarcoma and cancers of the breast, testis, cervix, ovary, colon, rectum, brain and spinal cord.

“One big misunderstanding that still remains is that we need to raise patients’ awareness that they are at risk and that risk is typically from treatment. Risk is really not from the cancer,” Reinecke noted.

Fertility preservation for men includes either sperm banking or testicular shielding, while women may have the option of egg and embryo freezing, ovarian tissue freezing, ovarian transposition and ovarian suppression.

To identify reproductive specialists, patients can refer to organizations like the Alliance for Fertility Preservation, American Society for Reproductive Medicine and the Society for Assisted Reproductive Technology. In addition, brochures and resources are also available from the American Cancer Society, the Oncofertility Consortium and the LiveStrong Foundation. Lastly, to better understand oncofertility, patients may also reference the American Society of Clinical Oncology Guidelines issued in 2013.

Resources for patients are equally important, as the associated costs of fertility preservation are often a barrier for patients. For example, the average cost of sperm banking is approximately $1,000 to $1,500, according to the LiveStrong Foundation. Meanwhile, for women, the average cost of freezing eggs or embryos is about $11,900 to $12,400, with an additional $3,000 to $8,000 for the medication required for stimulation of the ovaries.

To address financial burdens, early discussions may aid in receiving coverage through insurance, or starting the appeal process even earlier.

“Any kind of early discussion where that would allow (the patient) to understand the financial implications and allow them to marshal resources and to even, perhaps, go to their insurance company and fight for this coverage — all of that can help provide better access,” said Reinecke.

Keep in mind, these initial fertility preservations do not include the additional bill of reproductive specimen storage — which amounts to several hundred dollars a year and is not covered by insurance.

Important Discussions

Decisions on fertility preservation typically need to be made before cancer treatment begins; however, fertility preservation options are not always routinely presented to patients at all, let alone in a timely manner.

“One example we always give is, often, a breast cancer patient will be diagnosed and be seeing a breast surgeon and going through the process of surgery before they even start to think about subsequent treatment, and the time in which they are healing is often an optimal time (to have these discussions),” said Reinecke. “So, the earlier that the oncology care providers can have that discussion with the patient, the more viable this option is.”

Although the fertility preservation process is done by endocrinologists or reproductive specialists, it is still equally important for oncology health care teams to present options to patients. In particular, multidisciplinary health care teams should be informing patients of their risk of infertility, describing options for oncofertility, and referring these patients to reproductive specialists.

“It would be ideal (to incorporate fertility specialists in to a multidisciplinary team) — there definitely has to be give and take between the oncologist and the reproductive endocrinologist if the patient opts for undergoing a cycle for egg freezing because there can be medical concerns,” said Reinecke.” We want oncologists to feel comfortable. That is absolutely critical to having a seamless experience and a good medical outcome for patients.”

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