Utah bill would expand Medicaid coverage to include fertility preservation for cancer patients

SALT LAKE CITY — When Rep. Raymond Ward, R-Bountiful, found out his son had cancer, the last thing on his mind was his son's ability to have children.

"You're not thinking about that; you're just trying to get through this week and next week and the next week, and hope that your child doesn't die. You don't even know how to plan ahead for those things," he said.

Doctors thought the first treatment would cure Ward's son, but within a month the cancer had returned, and more aggressively this time. His teenage son would end up needing a bone marrow transplant and more aggressive treatment.

"He hadn't even recovered from the first chemotherapy," Ward said.

The treatment saved his son's life, but it also cost him the option to ever father his own biological children.

"We're obviously so glad, so blessed for him and for our family that his life was spared, but we would have wished that other thing could have turned out differently. And I'm sure most every family and most every person would wish that they could still have children later, in addition to getting the treatment that they need," Ward said.

Because the cancer came back so quickly, the small window of opportunity to preserve his son's ability to have children was lost. His son has since recovered and is in his second year of medical school.

Ward is now sponsoring HB192, a bill that would help other cancer patients in Utah get access to fertility treatments before losing their ability to parent children due to aggressive cancer treatments. The bill would allow cancer patients on Medicaid to apply for a waiver that would cover fertility treatments. The bill would not cover future IVF treatments for patients. For women, harvesting eggs can cost thousands of dollars, while the procedure for men is fairly inexpensive.

"It's just another unfortunate health care thing where the cost to a woman for the thing is more than the cost to the man so that you know that could easily be unattainable for a woman who had cancer," Ward told KSL.com.

That's exactly what Brooke Lee faced when she was diagnosed with cancer at a routine check-up last year at the age of 28 and quickly learned she would need to undergo surgery to save her chance of becoming a mother after recovering.

"When I reviewed the price sheet, I was prepared to spend my family's entire life savings, take out a personal loan, or even apply to any entry-level jobs available at companies I had heard currently offered fertility benefits to their employees — such as Starbucks — despite me holding a bachelor's degree from Harvard University," Lee told the Senate Health and Human Services Committee Wednesday afternoon.

Fortunately for Lee, her husband's health insurance through the University of Utah had recently been expanded to include the cost of fertility preservation, something that provided huge financial relief for the couple and was ultimately life-changing.

"Moving forward with less financial stress and my fight for survival has given me the confidence to know that whatever happens during my upcoming months of chemo, at least I have a lucky 13 eggs waiting on ice," she said. "This coverage has given me an immense boost of hope and support in my future quality of life to choose biological parenthood once I win back my health, safety and freedom from this destructive disease."

Cancer patients sometimes find themselves in the worst position imaginable: having to choose between life-saving treatments and the ability to have children. With the cost of those fertility treatments covered by insurance, Ward hopes to help cancer patients in the state choose the treatment, even if it causes sterility.

"The idea that an established medical therapy, which has such a big impact on the patient's life — their quality of life is a very small part of this costs — and the fact that it's not covered is hard to comprehend," Dr. Douglas Fair, an oncologist, told the Senate committee. Many patients choose not to undergo the fertility preservation treatment because of the cost alone, he said.

Oncologists have a difficult job and have to drop several bombs in a row to patients, Fair said.

"We basically diagnose somebody with cancer, drop that bomb. And then we drop another bomb in stating their chance of infertility," he said. While not all cancer patients face infertility, a little more than half of all cancer patients of reproductive age do, Fair said.

While Ward does have firsthand experience with the detrimental impact cancer has on a person and families, he said it wasn't necessarily the inspiration behind the legislation; he just knows this coverage would help many families in Utah.

The bill would also require the insurance to cover the cost of freezing the samples for a certain number of years, but not permanently.

The second part of Ward's bill would criminalize the act of fertility doctors fathering children with their patients without consent. While it's shocking to some that this does go on, there have been cases of fertility doctors fathering their patients' children without their knowledge or consent. Under HB192, this crime would carry a third-degree felony charge.

"It's rare, but it has happened," Ward said. "This (bill) just makes that action … a criminal act."

According to the fiscal note filed with the bill, HB192 could cost the Utah Department of Health Medicaid about $355,000.

The bill passed the House earlier this month with a 53-16 vote, and it passed the Senate committee Wednesday. It will now be added to the other fiscal bills in the Senate before going to the Senate floor for a vote. If it passes the Senate, the bill will need to briefly return to the House for concurrence and revote because a different version of the bill with clarifying language was adopted since it passed the House.

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