Rep. Ray Ward’s son was in 10th grade when he started to not feel well. One day, Ward said, he felt a lump “the size of a potato” in his son’s abdomen, and a doctor told them that he had cancer.
Now, about a decade later, his son is healthy and doing well, “and we’re very thankful for that,” Ward told other legislators Thursday.
“But in the course of all that treatment, the chemotherapy that he got made it so that he will not be able to ever have children,” said the Republican lawmaker from Bountiful.
Ward is now sponsoring HB192 to help other people preserve their fertility before beginning life-saving treatments.
Specifically, if someone covered by Medicaid has cancer or another disease that requires treatment that would “render them permanently unable to have their own children,” Ward’s bill would require Medicaid to cover the collecting and freezing of sperm or eggs.
The bill also makes it a third-degree felony for a health care provider to use their “own gamete, when providing assisted reproductive treatment to a patient, without the patient’s written consent.”
The House Business and Labor Committee passed HB192 Thursday with an 8-4 vote, sending it to the House floor. If it becomes law, Utah would become one of two states, along with Illinois, to cover these services for Medicaid patients.
A cancer diagnosis is enough to turn a person’s life “upside down,” without also having to worry about their fertility, said Dr. Douglas Fair, an oncologist who treats pediatric and adolescent young adult patients. And steep out-of-pocket costs are the biggest barrier for people to preserve their ability to have children, he said, since Utah is not currently among the 10 states that require some sort of insurance coverage of fertility treatments for cancer patients.
“One of the hardest parts of my job is telling patients, who deeply care about parenthood, that we have a proven and effective method for safeguarding this option for them, and then witnessing their disappointment and sadness when the insurer denies them coverage,” Fair said.
Each year in Utah, roughly 1,500 children and young adults are diagnosed with cancer, according to Fair. Their cure rate is high, at nearly 85%, he said, but “over half of these patients face serious risk for infertility due to life-saving therapies.”
Fertility preservation costs “unfairly affects women,” Fair said. While sperm banking is a couple of hundred dollars, egg retrieval costs about $15,000, he said. And then it’s roughly $200 a year to freeze the tissue.
Studies have shown that being able to have children is so important for some cancer patients that they will not take the recommended therapies, and “increase the chance of treatment failure, just to decrease the risk of infertility,” Fair said.
As co-medical directors of the University of Utah’s oncofertility program, Fair and Dr. Joseph Letourneau help patients navigate these issues. They compare insurance coverage of fertility preservation for cancer patients to when someone has breast cancer or loses a limb from a tumor. In those cases, insurance companies would generally help pay for breast reconstruction or a prothesis, they said.
National medical groups, including the American Society of Clinical Oncology and the American Society of Reproductive Medicine, “have all published policy statements affirming that discussion about fertility preservation is an integral part of cancer treatment,” according to Fair.
As a “pro-life state,” Ward said “one of the things I would hope that means is that if people want to have children, we as a society would agree that we would honor their wish and help them do that.”
Some committee members said they were worried about how much this Medicaid coverage would cost and wondered if the government should pay for these services with taxpayer dollars.
Earlier drafts of the bill also covered in vitro fertilization and included state employees, but Ward said he revised the bill to remove IVF and only cover Medicaid patients.
An updated fiscal note for the latest version was not available during the committee hearing Thursday, but the estimated overall cost is around $320,000, according to Joyce Reinecke, executive director of the Alliance for Fertility Preservation.
“As the mother of my two favorite humans on the entire planet, I will tell you right now that my kids are ... priceless, and I know that every parent in here would agree with that,” Rep. Ashlee Matthews, D-Salt Lake City, said.
Rep. Brady Brammer, R-Highland, responded, “I know that the good representative says you can’t put a price on it, but we actually are required by law to put a price on this, and it’s important that we look at that.”
While Brammer said he was concerned about the costs, he did not want to prevent the bill from moving forward.
In July, the University of Utah added fertility preservation to insurance plans for employees diagnosed with cancer, Fair told the committee.
That’s “great,” Rep. Jim Dunnigan said, and “how it should be done.” While Medicaid is run by the government, the Republican legislator from Taylorsville said, “hopefully, we can stay out of the commercial market and let the private sector decide what they want to do.”
A criminal charge for unethical providers
Rep. Norman Thurston, R-Provo, said he supported the fertility preservation portion of the bill and that it was “absolutely essential that we do this.” But he said he is concerned about the penalty section of the bill.
Ward said he included the third-degree felony for health care providers who use their own genetic material without the knowledge of their patients because of stories about this happening across the country.
“It is horrible behavior when people do this and needs to be punished,” Thurston said, but “I’m not entirely sure what the correct level of punishment is.”
When someone is diagnosed with infertility, said Brenda Spearman, executive director of the Utah Infertility Resource Center, “regardless of the reason, it’s a very devastating thing. And many of these couples and families are desperate to become a family and to conceive.”
This would protect families who turn to providers “who are less than ethical,” she said.
Becky Jacobs is a Report for America corps member and writes about the status of women in Utah for The Salt Lake Tribune. Your donation to match our RFA grant helps keep her writing stories like this one; please consider making a tax-deductible gift of any amount today by clicking here.