Illinois and its Health Insurance Coverage for Infertility Treatments

By Gina McCammon

Many people ask themselves, “Do I want children?” And this can lead to a series of related questions like, “How many kids do I want?” “How old do I want to be when I start my family?” “Should I be a parent?” For some, biology is on their side, and they don’t have to worry about fertility. Others must grapple with infertility and confront the possibility that even if they answer “yes” to wanting children, it might not happen, at least not without assistance. With today’s medicinal technology, people who face infertility can look to treatments like fertility drugs, intrauterine insemination (IUI), in-vitro fertilization (IVF), and cryopreservation. However, these procedures can come with a high cost. Now the question is not just how much does raising a child cost, but how much will getting pregnant cost? Depending on the state, health insurance can help cover the cost of such treatments. In Illinois, where does health care coverage stand with reproductive health treatments like IUI and IVF?

Ten to fifteen percent of heterosexual couples are diagnosed with infertility following one year of unsuccessfully trying to conceive. If a couple seeks treatment, they undergo testing to determine the source of the problem (refer to Figure 1). Treatment revolves around the source, if the medical professional can detect one. Options usually include cycles of IUI or IVF. IUI is the placement of specially prepared sperm directly in the uterus. IVF is a more complicated set of procedures that places specially prepared embryos in the uterus. Within those treatments is a lengthy list of steps and requirements to receive the actual service like: pre-IVF screening, physician consultations, egg retrieval procedures, fertilization, etc. They are separated by the chosen clinic into Included Services and Excluded Services, meaning the prices depend on the clinic and the presented prices do not allocate a total cost because unaccounted charges like unexpected appointments and tests are omitted. On top of that, a majority of patients require more than one cycle of treatment according to National Library of Medicine.

Figure 1 sourced from: KFF

For one complete cycle of IVF, it can cost anywhere between $10,000 to $15,000, averaging about $12,000. Again, this does not include the Excluded Services and varies on the clinic and jurisdiction. Thus, patients bear the burden of researching clinics that fit their needs and their wallet. But as noted on the Advanced Fertility Center of Chicago website: “Do not equate cost with quality . . .” A clinic may cost less and their success rate may be lower, but that does not necessarily mean that a clinic that costs more has a higher success rate. Infertility treatments are an investment of time and money, and it’s best to make an informed, educated investment.

Twenty-one states have some infertility insurance coverage laws (see Figure 2); Illinois is one of them. Under Illinois’s plan, group health policies that cover more than twenty-five employees and offer pregnancy-related benefits must provide infertility treatment. Specifications include that the covered individual has been unable to get or stay pregnant, or has not had a successful pregnancy by assistance of less costly infertility treatments covered by the health insurance plan. The covered individual has yet to have four completed egg retrieval procedures and, if they have had a live birth from an egg retrieval procedure, they then have two more egg retrieval procedures available under the coverage. All procedures must be performed at medical centers that follow either the American College of Obstetric and Gynecology or the American Fertility Society vitro fertilization standards.

The Illinois state law for infertility insurance is comparatively progressive and works to ensure that persons diagnosed with infertility are not left to pay completely out of pocket. However, the costs of IVF and IUI extend beyond the coverage available with the Excluded Services, the varying prices of the clinics, the normal need of multiple completed cycles of treatment, and the fact that not every person qualifies for coverage.

Figure 2 sourced from: Resolve

The Access to Infertility Treatment and Care Act addresses this problem for all states. The federal legislation works to enforce group health care plans or health insurance issuers who offer group insurance to follow Illinois’s approach to support infertility treatments. What the proposed Act asks of Congress is to acknowledge that infertility is a medical disease recognized by the World Health Organization, the American Society for Reproductive Medicine, and the American Medical Association. Infertility affects a large number of American citizens. The Act also emphasizes how infertility deserves health insurance coverage because it compares to other serious diseases and conditions covered by health insurance. As the legislation states, “The ability to have a family should not be denied to anyone on account of a lack of insurance coverage for medically necessary treatment.”

Impressively, Illinois has infertility coverage that outshines most of the states. If the Access to Infertility Treatment and Care Act is enacted by Congress (and signed into law by the President), Illinois residents will see an increase in coverage for infertility treatments because the law will extend beyond group health insurance policies with at least twenty-five persons. The bill’s passage would cause an inevitable increase in utilization of IUI and IVF treatments and other infertility treatments because they would become more accessible and affordable to a wider population.

The next possible step to increase access to infertility treatment would be to incorporate infertility coverage into Medicaid. Medicaid reaches a wider number of U.S. citizens and would help lower income individuals access infertility treatments. As of 2024, no state Medicaid program covers IUI or IVF. New York has some coverage for diagnostic services and treatment, while eight other states provide diagnostic services, but no state provides comprehensive treatment according to KFF.

The Access to Infertility Treatment and Care Act prevents drastic variation from state to state and, if it is enacted by Congress, offers the possibility of greater access to infertility treatments and a possible expansion of Medicaid coverage. Increasing accessibility means more people can exercise their right to explore the question of “Do I want children?” knowing that resources are available to them, supported by their health insurance, and with less financial burdens.

Zurawski v. State of Texas

Pro-choice advocates and supporters have been concerned about how the health and wellbeing of women will be affected following the decision of Dobbs v. Jackson Women’s Health Organization. Zurawski v. State of Texas, the first lawsuit brought against a state on behalf of individuals denied abortion care since Roe was overturned, highlights the difficulties women and providers have been forced to endure as a result of these legal changes.

Zurawski was filed by the Center for Reproductive Rights and seeks to clarify the scope of Texas’s medical exception under its state abortion bans. Healthcare providers have experienced confusion regarding when abortion can be legally provided due to ambiguous medical exception requirements, and this has severely impacted the lives of women in need of emergency care. The seven original plaintiffs included five women who were denied medically necessary abortion care, and two obstetrician-gynecologists. Since the outset of the case, a growing number of women have been denied abortion care in Texas, and thirteen more women have joined the case.

Current Abortion Laws in Texas

After Dobbs, a trigger ban went into effect in Texas that prohibited providing an abortion and set out civil, criminal, and professional penalties for abortion providers who violate the law. While this abortion ban has narrow exceptions to save the life of a pregnant patient, it is unclear when physicians are allowed to provide care under the medical emergency exception. Despite repeated requests, the state has failed to provide any significant guidance or clarification to doctors on this issue.

The Texas Medical Board proposed new guidance for medical exceptions in 2024, but reproductive rights advocates were disappointed by the lack of specificity the guidance provided and conditions that could qualify. The Center for Reproductive Rights argues that physicians should be allowed to exercise their own good-faith judgment regarding which patients qualify under the medical exception, rather than allowing politicians to make those decisions. Pro-life advocates, however, argue that doctors could willfully misinterpret the laws, giving physicians greater discretion to open the door to medically unnecessary abortions in non-emergency situations.

The Impact on Women

The lead plaintiff, Amanda Zurawski, was a thirty-five year-old resident of Austin, Texas when she was denied a medically necessary abortion. Amanda’s pregnancy had proceeded without incident until she was diagnosed with an “incompetent cervix” at seventeen weeks. Her physician explained that her baby would not survive because her pregnancy was still many weeks before viability. Amanda was sent home, and her water broke that night. She returned to the emergency room and was diagnosed with preterm pre-labor rupture of membranes. All her amniotic fluid had drained, so the emergency room staff kept her overnight in hopes that she would go into labor on her own. By morning, however, she had not gone into labor, her baby still showed cardiac activity, and she had yet to show signs of acute infection.

The hospital informed her that, under Texas’s abortion ban, there was no other medical care that it could provide. Before Dobbs, a patient in Amanda’s condition would have been offered an abortion given these medical circumstances, but hospital workers were unsure if providing an abortion without acute signs of infection would fall within the emergency medical exception under the state’s abortion ban.

Amanda was told that delivery could take hours, days, or weeks, and her doctor urged her to stay within a fifteen-minute radius of a hospital in case her health deteriorated quickly. Furthermore, the closest legal abortion provider was eleven hours away in New Mexico, so she was unable to travel there.

Amanda spent two days at home grieving her inevitable loss and fearing for her own health. On the third day, she went for a check-up at her obstetrician’s office where her vitals were found to still be stable. On the drive back home, Amanda developed chills and started shivering. At home, she had a temperature of 101 degrees and stopped responding to her husband’s questions: She was showing signs of sepsis.

Amanda’s husband took her to the emergency room, and by the time she was admitted, her temperature had peaked at 103.2 degrees. The medical team confirmed that she was septic, administered antibiotics, and finally decided that inducing labor would not violate Texas’s abortion bans. Amanda delivered the child, and her baby passed away.

By that night, Amanda’s fever had relented, but she had developed a secondary infection, chorioamnionitis, and septic shock. This second round of sepsis required a three-day stay in the intensive care unit for treatment. During this time, her family flew in from across the country in fear that it would be the last time they would ever see her.

Though Amanda was eventually discharged and returned home, her suffering continued. The infections caused severe scar tissue to develop in her uterus and on her fallopian tubes. During a procedure to remove the scar tissue, her physicians were able to clear her uterus and one fallopian tube, but the other fallopian tube remains permanently closed. In order for Amanda to become pregnant again, she was advised to undergo in vitro fertilization, which is invasive and provides uncertain success. Other plaintiffs in this case explained they went through similar experiences due to the Texas abortion bans.

Intersection with Katie Cox Decision

On November 28, 2023, the Supreme Court heard oral arguments on the State’s appeal of the district court ruling of Zurawski. At the hearing, Texas Assistant Attorney General Beth Klusmann said that in order to challenge the law, an actively pregnant woman seeking an abortion would have to bring the suit, even though it was impractical to ask a woman facing a medical crisis to come to court.

The Katie Cox case was filed by the Center for Reproductive Rights a week after the November hearing. Ms. Cox volunteered to be the plaintiff they needed to challenge these laws because she was currently experiencing a pregnancy that threatened her health and future fertility.

At the district court hearing, a lawyer for the Texas attorney general’s office argued that Cox did not meet all the elements to qualify for a medical exception, and that the exception would have to be broadened to include Cox’s condition. The judge, however, disagreed, and granted Cox’s motion to allow her to have an abortion. The judge emphasized that Cox desperately wanted to be a parent, and it would be a miscarriage of justice for this law to cause her to lose the ability to have children.

Within hours after the decision, Texas Attorney General Ken Paxton sent a threatening letter to the hospital where Cox’s physician worked and where she agreed to perform Cox’s abortion. He reminded the hospital that they were not protected from felony prosecution or private lawsuit if they allowed the abortion to occur on their property. Paxton also filed a petition asking the Texas Supreme Court to overturn the district court decision. The next day, the Texas Supreme Court put a hold on the ruling permitting Cox’s abortion. Cox remained pregnant until her condition deteriorated over the weekend, while awaiting a decision from the Texas Supreme Court, and she finally had to leave the state to receive an abortion.

The court eventually held that Cox did not qualify for an abortion in Texas under the medical exception because she was not facing a “life-threatening physical condition” as the law required. The question of what conditions and circumstances constitute a “life-threatening physical condition” remains unanswered, but the Zurawski case provides some hope that this question will be answered.

Criminalization

Under Texas law, physicians can face fines of at least $100,000, up to ninety-nine years in prison, and revocation of their state medical licenses if they are found to have violated abortion the state’s abortion laws. The threat of legal action, combined with unclear guidelines on what constitutes a medical exception, are instilling fear and deterring Texas physicians from performing abortions in cases where the procedure is crucial for treating dangerous pregnancy conditions. As a result, women like Amanda and Katie have experienced severe physical harm and mental anguish.

Contrary to the popular stated purpose of fostering life, abortion bans are making it less likely that women who want children will be able to do so safely and survive their pregnancies. Medical professionals are not able to practice properly and fulfill their ethical duties to patients without facing ruinous risks to their liberty and livelihood. This type of criminalization will only cause more harm to pregnant people, already in a vulnerable position. Without a harm reduction framework and policy changes, these harms will likely continue to escalate.

The state should provide clearer guidelines or allow doctors to have total discretion over medically necessary abortions without fear of prosecution to prevent more women from experiencing pregnancy related trauma.

The Zurawski case is currently pending decision from the Texas Supreme Court and will be decided by June of 2024.

With the rapidly changing landscape around women’s reproductive health in the United States, securing safe and effective birth control has become an imperative for American women. There are a handful of options available to them, including, but not limited to, birth control pills, hormonal patches, and femidoms. However, intra-uterine devices (IUDs) are thought to be the most effective long-term birth control option, as they last for three to five years. IUDs can only be inserted or removed by a healthcare practitioner. The IUD insertion procedure causes moderate to severe discomfort and can be especially painful for women who suffer from endometriosis. Even though an IUD insertion is an invasive procedure, there are no standard pain reduction measures in place. The fear of procedural pain could discourage women from using this birth control method, which would prevent them from benefitting from this otherwise safe birth control method.

Currently, the most common form of pain relief offered to women undergoing IUD insertions is ibuprofen, which is administered pre-procedure. However, another approach that has begun to gain traction is the use of parenthetical blocks, which are nerve blocks used during obstetric and gynecologic procedures. In this procedure, the analgesic lidocaine is administered locally, as an alternative to full anesthesia. However, some clinicians fail to raise the use of parenthetical blocks as an option to reduce pain of IUD insertion. Different women experience pain differently, and this may be due to cultural differences, personal experiences, or prior gynecologic conditions, such as endometriosis. As a result, the pain can often be downplayed by clinicians, exacerbating patients’ fear of pain and reducing their trust in their physician.  Complications can arise if a patient is not informed about the level of pain to expect during the procedure, especially if the patient moves during the insertion. If the patient opts for the use of a parenthetical block during their procedure, they must wait for at least seven minutes for it to be effective. The added time can help to reduce a patient’s anxiety levels, making them less likely to move around during the insertion. While other pain management procedures for IUD insertion are yet to be explored, the use of parenthetical blocks like lidocaine suggests that it is promising.

Pain management in birth control has large social implications in the twenty-first century. Research has shown that Black, Hispanic, and Asian communities face more unplanned pregnancies because they either do not use contraceptives at all, or use less effective methods. A 2008 study out of California found that women with public insurance or no insurance were unlikely to use high-efficacy birth control methods like IUDs or birth control pills. The study pointed to another problem which does not appear in statistics: provider-level knowledge about contraception. When comparing anticipated pain on a visual analog scale against different racial groups, African Americans had a median anticipated pain score of 68 compared to White participants, who had a median score of 51. The study suggested that anxiety surrounding the procedure could be reduced if the clinician advocating for and performing the procedure was able to assure patients and speak to its benefits.

With modern medical advances, it is concerning that a standard pain management protocol does not exist across the country for IUD insertion. While parenthetical blocks are a step in the right direction, most studies suggest that counseling in local clinics will help reduce the barriers to IUD use. A good way to do so would be to incorporate conversations about different forms of birth control in school curriculums at the high school level. Furthermore, making patients aware of all their options regarding pain management should be mandatory for clinicians. Physicians should also clearly communicate the extent of pain a patient should anticipate during the procedure. The hope is that like for other gynecological procedures, a standard protocol for IUD insertion will be implemented soon.