When Tyler Wilson came home after his deployment in Afghanistan in 2005, he was paralyzed from the waist down. He had been shot four times and still had a bullet lodged in his spinal cord.
Ten years later, when he and his wife, Crystal, decided to start a family, they needed medical assistance. But insurance didn’t cover their surgical or hormone treatments. Neither did the Veterans Administration.
“They basically said, thank you for your service,” Tyler said, “but you’re on your own for this one.”
When they got the bill for the first round of treatment, it was $40,000. Four rounds of treatment, and thousands of dollars later, they have two boys — Matthew, 3, and 6-month-old Michael.
The Wilsons now are trying to make sure other people don’t have to struggle so hard financially to start a family, working with lawmakers and other individuals to get The Colorado Building Family Act passed at the state Capitol.
House Bill 1158 would require insurance companies to cover the most effective treatment for infertility, called in vitro fertilization (IVF) — where the egg and sperm are fertilized in a lab then transferred into the uterus. The expanded coverage would also include the harvesting and freezing of eggs and sperm for people undergoing medical treatment that threatens fertility, such as chemotherapy.
“Income should not be a barrier for becoming a parent,” said Rep. Leslie Herod, a Denver Democrat who is helping lead the charge on the bill. “The treatment is out there, we just have to make it accessible and affordable.”
The bill passed unanimously in the House Health and Insurance Committee on Wednesday, after hours of testimony from individuals and couples — including the Wilsons — who struggle with infertility, and the hefty costs associated with its treatment.
No one spoke out against the bill, though a handful of insurance companies are “monitoring the bill’s outcome.”
Amanda Massey, executive director of the Colorado Association of Health Plans, a trade group that represents insurance companies, says her organization is neutral on the measure, but warned that the expansion of coverage will likely increase insurance premiums.
“We are really just here to remind legislators that this has a cost,” Massey said, adding that this bill would impact approximately one third of Colorado health plans.
A data analysis done by California’s Health Benefit Review Program for California’s State Legislature last year estimated that including IVF treatment in insurance coverage would increase individual monthly premiums by $2.76 for the state plan and $3.72 for the small group market.
But similar data appears to be lacking for Colorado.
What’s covered by insurance — and what’s not
Since the 1980s, 16 states have passed laws that require insurers to cover fertility diagnosis and treatment, according to the National Conference of State Legislatures.
In Colorado, insurance companies are required to cover X-rays and diagnostic lab procedures related to infertility. Insurance must also include coverage for artificial insemination, with the typical procedure being intrauterine insemination (IUI) — where sperm is inserted directly into the uterus by a doctor.
A woman under 35 has only a 25% chance of getting pregnant from IUI, after three rounds of treatment. For women over 40, that drops down to a 15% chance, according to Dr. Sara Barton, an infertility expert at the Colorado Center for Reproductive Medicine.
“So it’s largely an ineffective treatment, but it’s the one that insurance companies will cover,” Barton said during testimony. IVF, she said, has a 65% success rate on the first round of treatment.
“So I definitely understand the fact that premiums may go up a little bit. However, what I want to educate people on is the fact that, because insurance is not covering it, there are long-term, downstream costs that are causing riskier health decisions for both moms and babies,” Crystal Wilson said.
The bill also aims to help individuals undergoing medical treatment like chemotherapy have biological children in the future by preserving eggs and sperm.
“If this was covered by insurance, I would have been able to have kids,” said Carley Rutledge, a 25-year old film producer based in Denver who spoke in support of the bill. Rutledge was diagnosed with bone cancer when she was 16, but was unable to preserve her eggs before receiving chemo.
Around 2,000 people in Colorado between the ages of 15 and 44 are diagnosed with cancer each year, according to Dr. Leslie Appiah, a doctor who specializes in infertility and reproductive health problems at the University of Colorado Anschutz Medical Campus.
For males under 18, 66% of them will experience difficulty with testicular function after cancer treatment. And 40% of women from ages 18 to 39 will be less likely to conceive after cancer treatment.
Helping to remove the stigma of infertility
For state Rep. Kerry Tipper, a Democrat from Lakewood who is also sponsoring the bill, the topic is deeply personal.
Tipper and her husband have been trying to get pregnant for over four years.
“We’ve always envisioned being parents. The house we bought, the life we’ve built … everything has centered around us building a family,” Tipper said. “And to know that that might not happen was devastating. But we have hope, because the majority of people that get treated have success and we are really good candidates for the treatment.”
Last session, Tipper had three artificial inseminations. And so far this session, she’s had two more. She says her experience has been hard to talk about and it has left her feeling isolated.
“But these are issues that can be overcome a lot of the time,” she said. “And a lot of times, it’s just an issue of cost. And to me, it’s unfathomable that you have someone with a medical diagnosis and they can’t access a cure because of the cost. And we know that in other states that’s not an issue.”
To help pay for their infertility treatment, the Wilsons created a GoFund me account to pool money from friends, family and sympathetic strangers. And they applied to a handful of grants, two of which they received. But still, the fertility treatment for their first son cost them $14,000 out of pocket. To conceive their second child, it took three more rounds of treatment.
Tipper says she and her husband haven’t encountered the cost barriers that a lot of people face. They have health coverage through her husband’s company, which is based in Massachusetts, where insurance companies are required to cover infertility treatment.
“And even though we have insurance, we still pay a lot of money out of pocket for it,” she added.
“What I realized early on is that what people do when they don’t have insurance coverage is they go into debt. They get second mortgages on their house. They max out their credit cards. They work three jobs. All so they can have a family,” said Tipper.
Which adds a lot of stress, and makes it even harder to get pregnant, she says.
“Infertility is also still a really stigmatized topic,” Tipper said. “We don’t talk about it a lot, and it can be so isolating for people.”
She said when she started drafting the bill, she was overwhelmed by how many individuals reached out to share their difficult fertility stories.
“We’ve had [legislative] aids telling their representatives that they’ve struggled with this issue and representatives who have shared in confidence with us that they struggle with this too,” Tipper said.
“There are so many people, even in this chamber, that have been impacted by this issue.”
The Wilsons frequently speak about their struggles with infertility and the lack of insurance coverage for such. In 2016, they traveled to Washington to lobby Congress to include IVF treatment in military insurance coverage.
The VA now covers some infertility treatment, but the criteria couples have to meet is stringent, Crystal said. The Wilsons were denied and had to appeal their case nine times before they finally received assistance from the VA for treatment to have their second son. But the IVF failed, and they had to do the process again at a different clinic.
“We want to make sure that anybody that is diagnosed with infertility after us don’t have to fight like we did,” Crystal Wilson said. “We don’t want other people, years or generations down the line, to have to fight the same fight.”
Crystal said that the conversation at Colorado’s Capitol on Wednesday felt different.
“The fact that every single representative on the committee voted in favor of the bill was, honestly, to my recollection, has never happened in any other state, and in D.C., it definitely didn’t happen,” Crystal Wilson said.
Rep. Perry Will, a Republican from New Castle, choked up while trying to express his support for the bill. “My grandkids are the most important thing that God gave me,” he said.
Later, he shared with The Colorado Sun that his daughter struggled for years to get pregnant. And fertility treatment helped give him a grandchild. Now he has three.
“Infertility is a bipartisan issue,” Will said. “It impacts everyone. It’s about family.”
The bill now heads to the House Appropriations Committee for its next hearing. If signed into law, the legislation would take effect on Jan. 1, 2022.
Updated at 8:05 a.m. on Feb. 14, 2020: This story was updated to correct attribution of a quote. Dr. Sara Barton, testifying about the effectiveness of artificial insemination techniques, said “So it’s largely an ineffective treatment, but it’s the one that insurance companies will cover.”
An earlier version of the story also misidentified the home cities of two lawmakers, Rep. Leslie Herod, a Democrat from Denver, and Rep. Perry Will, a Republican from New Castle. Also, the status of House Bill 1158 was described incorrectly. It next heads to the House Appropriations Committee.