Summary

This analysis builds on a continually growing body of research on racial disparities in COVID-19 by examining testing, infection, hospitalization, and death by race and ethnicity among patients in the Epic health record system. It contributes to the research in this area by providing insight into the experiences of a large patient population across a range of states and health systems, examining variation in the level of care patients required at the time they tested positive for COVID-19 by race and ethnicity, and assessing the extent to which underlying sociodemographic characteristics and health conditions explain racial disparities in hospitalization and death. Overall, it shows that, despite being at increased risk of exposure to the virus, people of color did not have markedly higher testing rates compared to White patients and were more likely to be positive when tested and to require a higher level of care at the time they tested positive. Moreover, it builds on previous research showing people of color have higher rates of hospitalization and death due to COVID-19 by finding that these disparities persist after controlling for sociodemographic characteristics and underlying health conditions. Key findings include:

• Differences in testing rates by race and ethnicity were small, but people of color were more likely, compared to White patients, to be positive when tested and to require a higher level of care at the time they tested positive for COVID-19. Although there were not large differences in testing by race and ethnicity, among those tested, Hispanic patients were over two and a half times more likely to have a positive result (311 per 1,000) and Black and Asian patients were nearly twice as likely to test positive (219 and 220 per 1,000, respectively) compared to White patients (113 per 1,000). Further, larger shares of Black, Hispanic, and Asian patients were in an inpatient setting when they tested positive for COVID-19 compared to White patients, and they also were more likely to require oxygen or ventilation at the time of diagnosis.
• Black, Hispanic, and Asian patients had significantly higher rates of infection, hospitalization, and death compared to their White counterparts. The infection rate for Hispanic patients was over three times higher than the rate in White patients (143 vs. 46 per 10,000), and the rate among Black patients was over two times as high (107 per 10,000). The hospitalization rate for Hispanic patients was more than four times as high as the rate in White patients (30.4 vs. 7.4 per 10,000), and the rate in Black patients was over three times as high (24.6 per 10,000). Death rates for both groups were over twice as high as the rate for White patients (5.6 and 5.6 compared to 2.3 per 10,000). Asian patients also faced significant disparities in these measures.
• Racial disparities in hospitalization and death persisted among positive patients even after controlling for certain sociodemographic factors and underlying differences in health, with Asian patients exhibiting the highest relative risk. Among patients who tested positive for COVID-19, Black, Hispanic, and Asian patients remained at higher risk for hospitalization and death compared to White patients with similar sociodemographic characteristics and underlying health conditions. Asian patients were at the highest risk relative to White patients, followed by Hispanic and Black patients.

As previously documented, the higher infection rate among people of color likely reflects their increased risk of exposure to coronavirus due to their work, living, and transportation situations. They are more likely to be working in low-income jobs that cannot be done from home, to be living in larger households in densely populated areas, and to utilize public or shared modes of transportation. Despite being at increased risk of exposure to the virus, people of color did not have markedly higher testing rates compared to White patients and were more likely to be positive when tested and to require a higher level of care at the time they tested positive for COVID-19. These findings suggest that people of color may face increased barriers to testing that contribute to delays in them obtaining testing until they are in more serious condition.

The higher hospitalization and death rates among patients of color, in part, reflect higher infection rates and higher rates of underlying health conditions as well as social and economic inequities and barriers to care. However, the persistence of disparities after controlling for COVID-19 infection, certain sociodemographic factors, and underlying health conditions show that differences in these underlying factors do not fully explain the disparities in hospitalization and death. This finding suggests that other factors, including racism and discrimination, are negatively affecting their health outcomes through additional avenues.

Together, the findings point to the importance of considering health equity in COVID-19 response and relief efforts and health care more broadly, and, in particular, improving access to testing before individuals develop severe illness in order to slow the spread of infections. They also illustrate the importance of considering a wide array of factors both within and beyond the health care system and addressing structural and systemic racism and discrimination as root causes as part of efforts to address health disparities. These efforts will be key for narrowing the disparate effects of COVID-19, ensuring equitable distribution of treatments and a vaccine as they are developed, and preventing widening disparities in health care more broadly looking forward.

Introduction

A continually growing body of research consistently shows people of color are bearing a disproportionate burden of COVID-19 cases, deaths, and hospitalizations and that they may face barriers to testing. For example, KFF analysis of state reported data shows that Black individuals account for more cases and deaths relative to their share of the population in most states reporting data. Other analysis of state-reported data finds higher mortality rates among Black and American Indian and Alaska Native (AIAN) people, disparities for Asian and Native Hawaiian and Pacific Islander (NHOPI) individuals in certain areas, and a recent rise in mortality rates for NHOPI and Hispanic people. Data also show that Black, Hispanic, and AIAN people are at increased risk of hospitalization due to COVID-19. Information on testing by race and ethnicity has been limited but suggests people of color may face increased barriers to testing.

This analysis builds on this body of research by examining COVID-19 testing, infection, hospitalization, and death as of July 2020 by race and ethnicity among active patients in the Epic health record system, which includes 53 health systems representing 399 hospitals across 21 states (see Methods for more details). It contributes to the research in this area by providing insight into the experiences of a large patient population across a range of states and health systems, examining variation in the acuity of patients by race and ethnicity at the time they test positive for COVID-19, and assessing whether racial disparities in hospitalization and death persist after controlling for sociodemographic characteristics and underlying health conditions.

Overview of the Epic Patient Population

The analysis is based on Epic Health Research Network (EHRN) and KFF analysis of data for roughly 50 million patients in the Epic health record system who have interacted with the health system in the past two years and have known race and ethnicity. Findings are presented for Black, Hispanic, Asian, and White patients. Due to data limitations, we do not present findings for smaller population groups, including AIAN and NHOPI patients, or people who report multiple races. As availability of data for smaller population groups increases over time, it may allow for future analyses focused on the experiences of these populations.

The Epic active patient population includes somewhat higher shares of Black and White patients and lower shares of Hispanic and Asian patients compared to the total U.S. population. For example, among the Epic active patient population, 15% of patients are Black, 10% are Hispanic, 3% are Asian and 69% are White. Among the total U.S. population, 13% of individuals are Black, 19% are Hispanic, 6% are Asian, and 60% are White. Just over half of the active patient population is female (54%), similar to the share of the overall U.S. population (51%). The active patient population includes a smaller share of children under age 19 compared to the total population (13% vs. 24%) and a larger share of adults age 65 or older (24% vs. 16%).

Key Findings

We examined overall rates of testing, infection, hospitalization and death associated with COVID-19 among the total active population by race and ethnicity. In addition, we assessed the share of positive cases among individuals tested and the level of care individuals required at the time they tested positive by race/ethnicity.

Testing, Positivity Rates, and Level of Care at Time Tested

There were small differences in rates of testing by race and ethnicity. Black and Hispanic patients were slightly more likely to be tested compared to White patients (489 and 461 vs. 408 per 10,000) while the testing rate among Asian patients was lower compared to White patients (345 vs. 408 per 10,000) (Figure 1).

Among those tested, Black, Hispanic, and Asian patients were more likely than White patients to test positive for the virus. Hispanic patients had the highest positivity rate, which was over two and half times higher than the rate for White patients (311 vs. 113 per 1,000) (Figure 2). Black and Asian patients were nearly twice as likely to test positive (219 and 220 per 1,000, respectively) compared to White patients (113 per 1,000).

Black, Hispanic, and Asian patients also required a higher level of care at the time they tested positive for COVID-19 compared to White patients. Larger shares of Black, Hispanic, and Asian patients were in an inpatient setting when they tested positive for COVID-19 compared to White patients (Figure 3). They also were more likely to require oxygen or ventilation at the time of they tested positive.

Infection, Hospitalization, and Death Rates

Overall, Black, Hispanic, and Asian patients had significantly higher rates of infection compared to White patients. Infection rates among Black and Hispanic patients were over two and three times higher, respectively, compared to the rate for White patients (107 and 143 vs. 46 per 10,000) (Figure 4). The infection rate among Asian patients was also significantly higher than the rate for White patients (76 vs. 46 per 10,000).

Black, Hispanic, and Asian patients also had significantly higher rates of hospitalization and death due to COVID-19 compared to White patients. The hospitalization rates for Black and Hispanic patients were over three and four times higher, respectively, compared to the rate for White patients (24.6 and 30.4 vs. 7.4 per 10,000), and their death rates were over twice as high as the rate for White patients (5.6 and 5.6 vs. 2.3 per 10,000) (Figure 5). Asian patients also faced significant disparities in these measures.

Risk of Hospitalization and Death by Race/Ethnicity

Building on our examination of hospitalization and death rates, we conducted statistical analysis to assess whether racial disparities in hospitalization and death persist after controlling for certain sociodemographic characteristics and underlying conditions that are known to increase risk of illness and death. This analysis provides insight into the extent to which racial disparities in hospitalization and death are explained by differences in these underlying factors.

In this analysis, we controlled for age, sex, and health conditions that a previous EHRN analysis had identified as being significantly associated with higher risk of hospitalization and death (including, hypertension, diabetes, heart failure, chronic obstructive pulmonary disease (COPD), cerebrovascular disease or stroke, and obesity). We also controlled for social vulnerability based on where each person lives, using the CDC’s Social Vulnerability Index. The CDC’s Social Vulnerability Index identifies the level of social vulnerability associated with a census area based on 15 social factors, including poverty, income, employment, education, age, household composition, housing, transportation, and racial/ethnic distribution. It was developed to help public health officials and emergency response planners identify and map the communities that will most likely need support before, during, and after a hazardous event.

Among patients who tested positive for COVID-19, people of color remained at increased risk for hospitalization and death after controlling for sociodemographic factors and underlying health conditions. Asian patients were at the highest risk relative to White patients, followed by Hispanic and Black patients. Specifically, Asian patients were 57% more likely to be hospitalized and 49% more likely to die than White patients with the same age, sex, social vulnerability, and comorbidities (Figure 6). Similarly, Hispanic patients were 53% and 30% more likely to be hospitalized and die compared to White patients with similar characteristics and underlying health conditions, and Black patients were 33% and 19% more likely to be hospitalized and die after controlling for these factors. These findings show that differences in these underlying sociodemographic factors and health conditions do not fully explain the higher rates of hospitalization and death experienced by people of color. They suggest that other factors, including racism and discrimination, are negatively affecting COVID-19 health outcomes through additional avenues that are not captured by these measures, as discussed further below.

Implications

Consistent with other research, these findings show that, among patients across a range of health systems and states, people of color were at significantly increased risk for infection from coronavirus compared to their White counterparts. As previously documented, people of color face increased risk of exposure to coronavirus due to their living, working, and transportation situations. They are more likely to be working in low-income jobs that cannot be done from home, to be living in larger households in densely populated areas, and to utilize public or shared modes of transportation.

Despite being at increased risk of exposure to the virus, people of color did not have markedly higher testing rates compared to White patients and were more likely to be positive when tested and to require a higher level of care at the time they tested positive for COVID-19. These findings suggest that people of color may face increased barriers to testing that contribute to delays in them obtaining testing until they are in more serious condition compared to White patients. Other research suggests that people of color may face longer wait and travel times to access testing and have more limited access to testing within their neighborhood. Moreover, people of color are more likely to be uninsured and to face other barriers to health care, which may contribute to delays in obtaining testing or treatment. The findings from this analysis may understate barriers to testing as they represent active patients who are already connected to a health care system. Individuals who are not connected to a health system or provider may face further barriers to testing and care.

The findings build on previous studies that show people of color are at significantly increased risk for hospitalization and death due to COVID-19 and that these disparities persist after controlling for sociodemographic characteristics and underlying health conditions. These findings, in part, reflect their higher infection rates and higher rates of underlying health conditions that increase their risk of experiencing serious illness if they are infected with the virus. They also may reflect increased barriers to care, which can result in them delaying care and ultimately experiencing more serious conditions. However, this analysis further shows that racial disparities persist among patients who tested positive for COVID-19 after controlling for age, sex, social vulnerability, and comorbidities. Given that a wide body of research has demonstrated that racial health disparities are not driven by biologic differences, this finding suggests that there are other ways racism and discrimination may be negatively affecting COVID-19 health outcomes that are not captured by these measures. For example, research shows that people of color receive poorer quality of care. It also shows that the health care system’s historic mistreatment and abuse of communities of color and ongoing bias and discrimination among providers contribute to negative patient experiences and mistrust of the health care system. Research further suggests that chronic exposure to racism and discrimination create physiological or hormonal responses that negatively affect health (i.e., weathering).

In sum, consistent with a growing body of research, these findings show that people of color are bearing a disproportionate burden of negative health outcomes related to the COVID-19 pandemic at every stage – rates of infection, access to testing, and severity of illness and death. Other analysis also shows that the pandemic is taking a larger economic toll on people of color. While these disparities, in part, reflect social and economic inequities and underlying differences in health, the findings also show that they are not fully explained by these differences. Together, the findings point to the importance of considering health equity in COVID-19 response and relief efforts and health care more broadly, and, in particular, improving access to testing before individuals develop severe illness in order to slow the spread of infections. They also illustrate the importance of efforts to address disparities considering a wide array of factors both within and beyond the health care system and addressing structural and systemic racism and discrimination as root causes. These efforts will be key for narrowing the disparate effects of COVID-19, ensuring equitable distribution of treatments and a vaccine as they are developed, and preventing widening disparities in health care more broadly looking forward.

The analysis is based on EHRN and KFF analysis of data from the Epic health record system, which includes data for patients from 53 health systems representing 399 hospitals across 21 states. Overall, the system includes data for roughly 55 million active patients. Active patients include those who have interacted with the health system in the past two years, as indicated by either a face-to-face visit or an order placed in their chart. The analysis was restricted to the 89% of active patients who had known race/ethnicity, resulting in a total of roughly 50 million active patients included in the analysis.

The analysis presents findings for Black, Hispanic, Asian, and White patients. Due to data limitations, we do not present findings for smaller population groups, including AIAN and NHOPI patients, or people who report multiple races. As availability of data for smaller population groups increase over time, it may allow for future analysis focused on the experiences of these populations.

We examined testing, infection, hospitalization, and death rates related to COVID-19 among active patients. In addition, we identified the level of care required at the time a patient tested positive for COVID-19 by race and ethnicity.

Further, we performed statistical analysis using data from 332,956 people who tested positive for COVID-19 to examine increased risk of hospitalization and death for Black, Hispanic, and Asian patients relative to White patients after controlling certain sociodemographic characteristics and health conditions known to increase risk of illness and death.

Specifically, we controlled for age, sex, and health conditions that a previous EHRN analysis had identified as being significantly associated with higher risk of hospitalization and death. These conditions included hypertension, diabetes, heart failure, chronic obstructive pulmonary disease (COPD), cerebrovascular disease or stroke, and obesity. The prior EHRN analysis also suggested a significant risk for patients who were immunocompromised. However, that condition was not included in the model due to continued refinements in the definition of an immunocompromised state. In addition, we controlled for social vulnerability based on where each person lives, using the CDC’s Social Vulnerability Index. The CDC’s Social Vulnerability Index identifies the level of social vulnerability associated with a census area based on 15 social factors, including poverty, income, employment, education, age, household composition, housing, transportation, and racial/ethnic distribution. It was developed to help public health officials and emergency response planners identify and map the communities that will most likely need support before, during, and after a hazardous event. Statistical controls were performed using Cox Proportional Hazards models using 95% confidence intervals.

Introduction

Many people require fertility assistance to have children. This could either be due to a diagnosis of infertility, or because they are in a same-sex relationship or single and desire children. While there are several forms of fertility assistance, many services are out of reach for most people because of cost. Fertility treatments are expensive and often are not covered by insurance. While some private insurance plans cover diagnostic services, there is very little coverage for treatment services such as IUI and IVF, which are more expensive. Most people who use fertility services must pay out of pocket, with costs often reaching thousands of dollars. Very few states require private insurance plans to cover infertility services and only one state requires coverage under Medicaid, the health coverage program for low-income people. This widens the gap for low-income people, even when they have health coverage. This brief examines how access to fertility services, both diagnostic and treatment, varies across the U.S., based on state regulations, insurance type, income level and patient demographics.

Diagnosis and Treatment Services

Infertility is most commonly defined¹  as the inability to achieve pregnancy after 1 year of regular, unprotected heterosexual intercourse, and affects an estimated 10-15% of heterosexual couples. Both female and male factors contribute to infertility, including problems with ovulation (when the ovary releases an egg), structural problems with the uterus or fallopian tubes, problems with sperm quality or motility, and hormonal factors (Figure 1). About 25% of the time, infertility is caused by more than one factor, and in about 10% of cases infertility is unexplained. Infertility estimates, however do not account for LGBTQ or single individuals who may also need fertility assistance for family building. Therefore, there are varied reasons that may prompt individuals to seek fertility care.

A broad array of diagnostic and treatment services may be necessary to assist in fertility (Table 1). Diagnostics typically include lab tests, a semen analysis and imaging studies or procedures of the reproductive organs. If a probable cause of infertility is identified, treatment is often directed at addressing the source of the problem. For example, if someone has abnormal thyroid hormone levels, thyroid medications may help the patient achieve pregnancy. If a patient has large fibroids distorting the uterine cavity, surgical removal of these benign tumors may allow for future pregnancy. Other times, other interventions are needed to help the patient achieve pregnancy. For example, if a semen analysis reveals poor sperm motility or the fallopian tubes are blocked, the sperm will not be able to fertilize the egg, and intrauterine insemination (IUI) or in-vitro fertilization (IVF) may be necessary. These procedures also facilitate family building for LGBTQ and single individuals, with use of donor egg or sperm, with or without a gestational carrier (surrogacy).

Utilization of Fertility Services

Our analysis of the 2015-2017 National Survey of Family Growth (NSFG) finds that 10% of women²  ages 18-49 say they or their partner have ever talked to a doctor about ways to help them become pregnant (data not shown).³  Among women ages 18-49, the most commonly reported service is fertility advice (Figure 2).

The CDC finds that use of IVF has steadily increased since its first successful birth in 1981. According to the most recent data, an estimated 1.8% of U.S. infants are conceived annually using assisted reproductive technology (ART) (e.g., IVF and related procedures).⁴  The proportions are highest in the Northeast (MA 4.7%, CN 3.9%, NJ 3.9%), and lower in the South and Southwest (NM 0.4%, AR 0.6%, MS 0.6%).

Utilization of fertility services has dropped drastically during the COVID-19 public health emergency. On March 17, 2020 the American Society for Reproductive Medicine (ASRM) issued guidelines to stop all new fertility treatment cycles and non-urgent diagnostic procedures. Since then, ASRM has provided updated guidance on what conditions should be met and measures should be taken before safely resuming fertility care. During this time, a study by Strata Decision Technology of 228 hospitals across 40 states found patient encounters for infertility services were down 83% from March 22 to April 4, 2020 compared to this time the year prior.

Cost of Services

Many patients lack access to fertility services, largely due to its high cost and limited coverage by private insurance and Medicaid. As a result, many people who use fertility services must pay out of pocket, even if they are otherwise insured. Out of pocket costs vary widely depending on the patient, state of residence, provider and insurance plan. Generally, diagnostic lab tests, semen analysis and ultrasounds are less expensive than diagnostic procedures (e.g., HSG) or surgery (e.g., hysteroscopy, laparoscopy). Meanwhile treatment using fertility medications is less expensive than IUI and IVF, but even the less costly treatments can still result in thousands of dollars of out of pocket costs. Many people must try multiple treatments before they or their partner can achieve a pregnancy (typically medication first, followed by surgery or fertility procedures if medications are unsuccessful). A study of nearly 400 women undergoing fertility care in Northern California demonstrates this overall trend, with the lowest out of pocket spending on treatment with medication only and the highest costs for IVF services (Figure 3). Prior research showed the cost of just one standard cycle of IVF was approximately $12,500 in 2009, but is likely higher today due to rising health care costs overall. Furthermore, many patients require several rounds of treatment before achieving a pregnancy, with costs accruing each cycle making these interventions financially inaccessible for many. In addition to costs for the actual treatment, patients can be saddled with out of pocket expenses for office visits, diagnostic tests/procedures, genetic testing, donor sperm/egg use and storage fees and wages lost from time off work.

Insurance Coverage

Insurance coverage of fertility services varies by the state in which the person lives and, for people with employer-sponsored insurance, the size of their employer. Many fertility treatments are not considered “medically necessary” by insurance companies, so they are not typically covered by private insurance plans or Medicaid programs. When coverage is available, certain types of fertility services (e.g., testing) are more likely to be covered than others (e.g., IVF). A handful of states require coverage of fertility services for some fully-insured private plans, which are regulated by the state. These requirements, however, do not apply to health plans that are administered and funded directly by employers (self-funded plans) which cover six in ten (61%) workers with employer-sponsored health insurance. States also have purview over the benefits covered by their Medicaid programs. The federal government has authority over benefit requirements in federal health coverage programs, including Medicare, the Indian Health Service (IHS) and military health coverage.

Private Insurance

Fifteen states have laws in effect requiring certain health plans to cover at least some infertility treatments (a “mandate to cover”) (Figure 4). Additionally, Colorado recently enacted a requirement for individual and group health benefit plans to cover infertility diagnosis, treatment and fertility preservation for iatrogenic infertility, effective January 2022. Among states that do not have a mandate to cover, nine states⁵  and DC have a benchmark plan that includes coverage for at least some infertility services (diagnosis and/or treatment) for most individual and small group plans sold in that state.⁶  Two states (CA and TX⁷ ) require group health plans to offer at least one policy with infertility coverage (a “mandate to offer”), but employers are not required to choose these plans.

However, in states with “mandate to cover” laws, these only apply to certain insurers, for certain treatment services and for certain patients, and in some states have monetary caps on costs they must cover (Appendix 1). For example, in OH and WV, the requirement to cover infertility services only applies to health maintenance organizations (HMOs). In other states, almost all insurers and HMOs are included in the mandate. Many states provide exemptions for small employers (<50 employees) or religious employers. In addition, state laws do not apply to self-funded (or self-insured) employer plans, which are regulated by federal law. Sixty-one percent of covered workers are enrolled in a self-funded plan.

Even in states with coverage laws, not all patients are eligible for infertility treatment. In HI, someone with unexplained infertility only qualifies for IVF after five years of infertility. In others, patients are eligible after 1 year. Some states place age limits on female patients who can access these services (e.g., ineligible if 46 or older in NJ or if under age 25 or older than 42 in RI). Others place restrictions based on marital status; for example, until May 2020, IVF benefits were only available to married women in MD. Recently enacted legislation now expands coverage to unmarried women. Additionally, it is not always made clear if LGBTQ individuals meet eligibility criteria for these benefits, without a diagnosis of infertility. Furthermore, many costs associated with surrogacy are often not covered by insurance.

States also vary in which treatment services they require plans to cover. Some states mandate insurers to cover cryopreservation for persons with iatrogenic infertility, while others do not. Four states with insurer mandates do not cover IVF. Eleven states do, but with a dollar limit on coverage (e.g., $15,000 lifetime max in AR and $100,000 in MD and RI) or a limit on the number of cycles they will cover (e.g., one cycle of IVF in HI and three cycles in NY).

Do state mandates for IVF coverage affect use of services?

IVF utilization appears to be higher in states with mandated IVF coverage. CDC data from 2016 showed that in three of the four states deemed by the CDC to have “comprehensive coverage”⁸  for IVF (IL, MA, NH), use of assisted reproductive technology was 1.5 times higher than the national rate. Similarly, a national study found that IVF availability and utilization⁹  were significantly higher in states with mandated IVF coverage. A study in MA found IVF utilization increased after implementation of their IVF mandate, but overutilization by patients with a low chance of pregnancy success was not found. State level mandates can also help reduce inequities in access. For example, a recent bill proposed in the CA legislature would reverse existing limitations on fertility coverage and make the benefit available to single women and women in same sex relationships.

What does it cost to cover fertility benefits?

While the costs of fertility treatments can be very expensive for those who lack coverage, the cost of covering fertility benefits varies depending on the services covered and utilization with implications for state budgets, employers, and policy holders. For example, in 2019, New York passed a bill to require IVF and fertility preservation services for comprehensive private health insurance policies. The New York State Department of Financial Services estimated that premiums would increase 0.5% to 1.1% due to mandating IVF coverage, and 0.02% for mandating fertility preservation for iatrogenic infertility (caused by medical treatments).

An analysis of a bill proposed in CA to require private plans and Medi-Cal managed care plans to cover IVF services estimated that per member per month premiums would increase by approximately $5 in the private market and less than a $1.00 for Medi-Cal plans. Overall though, out of pocket spending for individuals seeking services would decrease substantially.

Data from MA, CT and RI suggest that mandating coverage does not appear to raise premiums significantly. All three states have been mandating infertility benefits for over 30 years, and estimate the cost of infertility coverage to be less than 1% of total premium costs. In 2017, California was considering a more limited bill that would require fertility preservation for iatrogenic infertility in certain individual and group health plans. As the bill was introduced, it was estimated to result in a net annual increase of $2,197,000 in premium costs or 0.0015% for enrollees in plans subject to the mandate.

While these costs could be modest in comparison to the costs of paying out-of-pocket for these services, there are other costs to coverage mandates. The ACA requires states to offset some of the costs for any state mandated benefits beyond essential health benefits (EHBs) in the individual and small group market. This requirement was estimated to cost NY $59 to $69 million per year if covering one cycle or $98 to $116 million per year if covering unlimited cycles of IVF.

What share of employers offer fertility benefits?

Large employers are more likely than smaller employers to include fertility benefits in their employer-sponsored health plans. According to Mercer’s 2017 National Survey of Employer-Sponsored Health Plans, 56% of employers with 500 or more employees cover some type of fertility service, but most do not cover treatment services such as IVF, IUI, or egg freezing. Coverage is higher for diagnostic evaluations and fertility drugs. Coverage is more common among the largest employers and those that offer higher wages (Figure 5).

Public Coverage

Medicaid

NSFG data show that significantly fewer women with Medicaid have ever used medical services to help become pregnant compared to women with private insurance. As of January 2020, our analysis of Medicaid policies and benefits reveal only one state, New York, specifically requires their Medicaid program to cover fertility treatment (limited to 3 cycles of fertility drugs) (Figure 6). However, some states may require Medicaid to cover treatments for conditions that impact fertility, while not directly stated in their policies. For example, states may cover thyroid medications, or cover surgery for fibroids, endometriosis or other gynecologic abnormalities if causing pelvic pain, abnormal bleeding or another medical problem, other than infertility. No state Medicaid program currently covers artificial insemination (IUI), IVF, or cryopreservation (Appendix 2).

Some states specifically cover infertility diagnostic services; GA, HI, MA, MI, MN, NH, NM and NY all offer at least one Medicaid plan with this benefit, but the range of diagnostics covered varies. For example, New York Medicaid specifically covers office visits, HSGs, pelvic ultrasounds and blood tests for infertility. Meanwhile, the infertility assessment covered by Georgia Medicaid includes lab testing, but not imaging or procedural diagnostics. Other states specifically do not cover infertility diagnostics, or more generally do not cover “infertility services,” which likely includes diagnostics. Others do not mention infertility diagnostics in their Medicaid policies, meaning the beneficiary would need to check with their Medicaid program to see if these services are covered (Appendix 2).

The Medicaid program’s lack of coverage of fertility assistance has a disproportionate impact on women of color. Among reproductive age women, the program covers three in ten (30%) who are Black and one quarter who are Hispanic (26%), compared to 15% who are White. Because eligibility for Medicaid is based on being low-income, people enrolled in the program likely could not afford to pay for services out of pocket.

The relative lack of Medicaid coverage for fertility services stands in stark contrast to Medicaid coverage for maternity care and family planning services. Nearly half of births in the U.S. are financed by Medicaid, and the program finances the majority of publicly-funded family planning services. Therefore, while there is broad coverage of many services for low-income people during pregnancy and to help prevent pregnancy, there is almost no access to help low-income people achieve pregnancy.

Medicare

While most beneficiaries of Medicare are over the age of 65+, Medicare also provides health insurance to approximately 2.5 million reproductive age adults with permanent disabilities. According to the Medicare Benefit policy manual, “reasonable and necessary services associated with treatment for infertility are covered under Medicare.” However, specific covered services are not listed, and the definition of “reasonable and necessary” are not defined.

Military

TRICARE: TRICARE, the insurance program for military families, will cover some infertility services, if deemed “medically necessary” and if pregnancy is achieved through “natural conception,” meaning fertilization occurs through heterosexual intercourse. Diagnostic services are covered, including lab testing, genetic testing, and semen analysis. Treatment to correct physical causes of infertility are also covered. However, IUI, IVF, donor eggs/sperm and cryopreservation are not typically covered, unless the service member had a serious injury while on active duty resulting in infertility.

Veterans Affairs (VA): Infertility services are covered by the VA medical benefits package, if infertility resulted from a service-connected condition. This includes infertility counseling, blood tests, genetic counseling, semen analysis, ultrasound imaging, surgery, medications and IVF (as of 2017). However, the couple seeking services must be legally married, and the egg and sperm must come from said couple (effectively excluding same sex couples). Donor eggs/sperm, surrogacy or obstetrical care for non-Veteran spouses are not covered.

Infertility Services In Publicly Funded Clinics

The CDC’s and Office of Population Affairs’ (OPA) Quality Family Planning recommendations address provision of basic infertility services. Family planning providers are recommended to provide at minimum patient education about fertility and lifestyle modifications, a thorough medical history and physical exam, semen analysis, and if indicated, referrals for lab testing of hormone levels, additional diagnostic tests (endometrial biopsy, ultrasound, HSG, laparoscopy) and prescription of medications to promote fertility. However, studies of publicly funded family planning clinics suggest that availability of infertility services is uneven. In a 2013-2014 study of 1615 publicly funded clinics, a high share reported offering preconception care (94% for women and 69% for men), but fewer offered any basic infertility services (66% for women and 45% for men). Provision of any infertility treatment was uncommon (16% of clinics), likely requiring referrals to specialists who may not accept Medicaid or uninsured patients.¹⁰  The majority of patients who rely on publicly funded clinics are low-income and would not likely be able to afford infertility services and treatments once diagnosed.

Per the Indian Health Services (IHS) provider manual, basic infertility diagnostics should be made available to women and men at IHS facilities, including a history, physical exam, basal temperature charting (to predict ovulation), semen analysis and progesterone testing. In facilities with OBGYNs, HSG, endometrial biopsy and diagnostic laparoscopy should also be available. However, it is unclear how accessible these services are in practice, and provision of infertility treatment is not mentioned.

Key Populations

Racial and ethnic minorities

The ability to have and care for the family that you wish for is a fundamental tenet of reproductive justice. For those who need it, this includes access to fertility services. The share of racial and ethnic minorities who utilize medical services to help become pregnant is less than that of non-Hispanic White women, despite research that has found higher rates of infertility among women who are Black and American Indian / Alaska Native (AI/AN). Our analysis of 2015-2017 NSFG data shows that while 13% of non-Hispanic White women reported ever going to a medical provider for help getting pregnant, just 6% of Hispanic women and 7% of non-Hispanic Black women did so (Figure 7). A higher share of Black and Hispanic women are either covered by Medicaid or uninsured than White women and more women with private insurance sought fertility help than those with Medicaid or the uninsured. A variety of factors, including differences in coverage rates, availability of services, income, and service‐seeking behaviors, affect access to infertility care. Furthermore, other societal factors also play a role. Misconceptions and stereotypes about fertility have often portrayed Black women as not requiring fertility assistance. Combined with the history of discriminatory reproductive care and harm inflicted upon many women of color over decades, some may delay seeking infertility care or may not seek it at all.

Other research has found that use of fertility testing and treatment also varies by race. An analysis of NSFG data found that among women who reported using medical services to help become pregnant, similar shares of Black (69%), Hispanic (70%) and White (75%) women received fertility advice. However, less than half (47%) of Black and Hispanic women who used medical services to become pregnant reported receiving infertility testing, compared to 62% of White women, and even fewer women of color received treatment services. According to an analysis of surveillance data of IVF services, use is highest among Asian and White women and lowest among American Indian / Alaska Native (AI/AN) women. Racial inequities may exist for fertility preservation as well; a study of female patients in NY with cancer found disproportionately fewer Black and Hispanic patents utilized egg cryopreservation compared to White patients. On average, more Black, Hispanic, and AI/AN people live below the federal poverty level than people who are White or of Asian/Pacific Islander descent. The high cost and limited coverage of infertility services make this care inaccessible to many people of color who may desire fertility preservation, but are unable to afford it.

Iatrogenic Infertility

Iatrogenic, or medically induced, infertility refers to when a person becomes infertile due to a medical procedure done to treat another problem, most often chemotherapy or radiation for cancer. In these situations, persons of reproductive age may desire future fertility, and may opt to freeze their eggs or sperm (cryopreservation) for later use. The American Society for Reproductive Medicine (ASRM) encourages clinicians to inform patients about fertility preservation options prior to undergoing treatment likely to cause iatrogenic infertility.

However, the cost of egg or sperm retrieval and subsequent cryopreservation can be prohibitive, particularly if in the absence of insurance coverage. Only a handful of states (CT, DE, IL, MD, NH, NJ, NY, and RI) specifically require private insurers to cover fertility preservation in cases of iatrogenic infertility. No states currently require fertility preservation in their Medicaid plans.

LGBTQ populations

LGBTQ people may face heightened barriers to fertility care, and discrimination based on their gender identity or sexual orientation. Section 1557 of the Affordable Care Act (ACA) prohibits discrimination in the health care sector based on sex, but the Trump Administration has eliminated these protections through regulatory changes. Without the explicit protections that have been dropped in the current rules, LGBTQ patients may be denied health care, including fertility care, under religious freedom laws and proposed changes to the ACA. However, these changes are being challenged in the courts because they conflict with a recent Supreme Court decision stating that federal civil rights law prohibits discrimination based on sexual orientation and gender identity.

In a committee opinion, ASRM concluded it is the ethical duty of fertility programs to treat gay and lesbian couples and transgender persons, equally to heterosexual married couples. They write that assisted reproductive therapy should not be restricted based on sexual orientation or gender identity, and that fertility preservation should be offered to transgender people before gender transitions. This allows transgender individuals the ability to have biological children in the future if desired. Despite this recommendation, in aforementioned states with mandated fertility preservation coverage for iatrogenic infertility, it remains unclear if this benefit extends to transgender individuals, whose gender affirming care can result in infertility. Additionally, many state laws regarding mandates for infertility treatment contain stipulations that may exclude LGBTQ patients. For example, in Arkansas, Hawaii and Texas and at the VA, IVF services must use the couple’s own eggs and sperm (rather than a donor), effectively excluding same sex couples. In other states, same-sex couples do not meet the definition of infertility, and thus may not qualify for these services. Data are lacking to fully capture the share of LGBTQ individuals who may utilize fertility assistance services. Research studies on family building are often not designed to include LGBTQ respondents’ fertility needs.

Single Parents

Single persons are often excluded from access to infertility treatment. For example, the same IVF laws cited above that require the couple’s own sperm and egg, effectively exclude single individuals too, as they cannot use donors. Some grants and other financing options also stipulate funds must go towards a married couple, excluding single and unmarried individuals. This is in opposition to the ASRM committee opinion, which states that fertility programs should offer their services to single parents and unmarried couples, without discrimination based on marital status.

Looking Forward

On a federal level, efforts to pass legislation to require insurers to cover fertility services are largely stalled. The proposed Access to Infertility Treatment and Care Act (HR 2803 and S 1461), which would require all health plans offered on group and individual markets (including Medicaid, EHBP, TRICARE, VA) to provide infertility treatment, is still in committee (and never made it out of committee when proposed during the 115th congress). There has been some more movement on the state level. Some states require private insurers to cover infertility services, the most recent of which was NH in 2020. Currently, NY continues to be the first and only state Medicaid program to cover any fertility treatment.

For those who desire to have children, obtaining fertility care can be a stressful process. Stigma around infertility, intensive and sometimes long or painful treatment regimens, and uncertainty about success can take a toll. On top of that, in the absence of insurance coverage, infertility care is cost prohibitive for most, particularly for low-income people and for more expensive services, like IVF or fertility preservation. Significant disparities exist within access to infertility services across, dictated by state of residence, insurance plan, income level, race/ethnicity, sexual orientation and gender identity. Achieving greater equity in access to fertility care will likely depend on addressing the needs faced by low-income persons, people of color and LGBTQ persons in fertility policy and coverage.

 

1. The evaluation of fertility can start after six months if the woman is over the age of 35. ↩︎
2. Data and research often assume cisgender identities and may not systematically account for people who are transgender and non-binary. The language used in this brief attempts to be as inclusive as possible while acknowledging that the data we are citing uses gender labels that we cannot change without misrepresenting the data. ↩︎
3. The CDC reports the percentage of women (ages 15-49) who have ever received “infertility services” (12.7%) which also includes medical help to prevent miscarriage. We report on the percentage of adult women (ages 18-49) who have ever received medical help to become pregnant, excluding medical help once women are already pregnant. ↩︎
4. The CDC does not track the number of births as a result of other fertility assistance, like fertility medications or IUI. However, in the 2012 CDC National Public Health Action Plan for the Detection, Prevention and Management of Infertility, they recommended the development of surveillance systems which would monitor the utilization and health outcomes of non-IVF treatment for infertility. ↩︎
5. AZ, IA, MI, MO, NV, NC, PA, TN, and VA. ↩︎
6. IL has a mandate to cover that applies only to group plans; however, the state’s benchmark plan includes coverage for infertility treatment, so individual plans in IL also cover these services. ↩︎
7. The TX benchmark plan includes coverage for diagnosis of infertility, so individual plans in TX also cover this service. ↩︎
8. “Comprehensive coverage” for ART defined by CDC as covering at least four oocyte (egg) retrievals. ↩︎
9. Availability was judged by the number of physicians performing IVF per 1,000 reproductive age women, and utilization was calculated by number of IVF cycles per 100,000 reproductive age women. ↩︎
10. Definitions of preconception care, basic infertility services and infertility treatment were left up to the interpretation of the respondent. ↩︎

Since taking office, President Trump has laid down an extensive record on health care, beginning on day one with his clearly-stated intention to repeal and replace the Affordable Care Act, and continuing through his most recent response to the COVID-19 pandemic. In addition, the Trump Administration has made or proposed many changes to health policies and programs that could have a significant impact on health coverage and health care.

President Trump’s record on health care illustrates his priorities. An incumbent president’s record is always relevant, but especially so for President Trump, who has not released more conventional campaign policy proposals. Moreover, the President’s response to the COVID-19 crisis, and its economic consequences could influence how voters view the president in terms of his character, his leadership and his ability to protect the nation – particularly given widespread and ongoing transmission of the virus in the U.S. and evidence that the U.S. has fared relatively poorly compared to peer nations.

From the start of his presidential term, President Trump took aim at the Affordable Care Act, consistent with his campaign pledge leading up to the 2016 election. He supported many efforts in Congress to repeal the law and replace it with an alternative that would have weakened protections for people with pre-existing conditions, eliminated the Medicaid expansion, and reduced premium assistance for people seeking marketplace coverage. While the ACA remains in force, President Trump’s Administration is supporting the case pending before the U.S. Supreme Court to overturn the ACA in its entirety that is scheduled for oral arguments one week after the election.

The Trump Administration has moved forward on many other health care fronts. The Administration has proposed spending reductions for both Medicaid and Medicare, along with proposals that would promote flexibility for states but limit eligibility for coverage under Medicaid (e.g., work requirements). The President has made prescription drug prices a top health policy priority and has issued several executive orders and other proposals that aim to lower drug prices; most of these proposals, however, have not been implemented, other than one change that would lower the cost of insulin for some Medicare beneficiaries with diabetes, and another that allows pharmacists to tell consumers if they could save money on their prescriptions. The Trump Administration has also moved forward with an initiative to improve price transparency in an effort to lower costs, though it is held up in the courts. President Trump has made other policy changes that have had a direct impact on reproductive rights, immigration, and on other health care issues that convey his priorities for the future.

This issue brief provides a detailed overview of the Trump Administration’s record on health care issues, including major proposals and actions on health care during his tenure in office relating to: the Administration’s response to the COVID-19 pandemic, the ACA and private insurance markets, Medicaid, Medicare, reducing prescription drug and other health care costs, sexual and reproductive health, mental health and substance use, immigration and health, long-term care, HIV/AIDS policy, and LGBTQ health. A separate resource compares President Trump’s record and proposals to those of former Vice President Biden.

COVID-19 Response

The COVID-19 pandemic, the worst health crisis facing the global community in more than a century, has taken a particular toll on the United States. Although the U.S. only represents 4% of the global population, it accounts for 23% of all COVID-19 cases and 21% of all deaths as of early September and ranks number one among high income countries as measured by cases per capita. The Trump administration has not established a coordinated, national plan to scale-up and implement public health measures to control the spread of coronavirus, instead choosing to have states assume primary responsibility for the COVID-19 response, with the federal government acting as back-up and “supplier of last resort.” The President has downplayed the threat of COVID-19, given conflicting messages and misinformation, and often been at odds with public health officials and scientific evidence. Despite this, the Administration has taken a number of actions to address the pandemic, including declaring federal emergencies to free up resources and flexibilities, signing emergency spending bills passed by Congress, providing emergency use authorization for hundreds of tests and other devices, issuing guidance documents, and announced “Operation Warp Speed”, to produce and deliver coronavirus vaccines. On the global front, the Administration has reduced U.S. engagement in addressing the pandemic, including ended funding for the World Health Organization (WHO) and announcing withdrawal from WHO membership.

Affordable Care Act – Private Health Insurance

President Trump’s record on the Affordable Care Act (ACA) marketplaces and private insurance began on his first day in office, when he issued an executive order stating, “It is the policy of my Administration to seek the prompt repeal of the Patient Protection and Affordable Care Act.” Pending such repeal, he ordered executive branch agencies to exercise all authority and discretion available to waive, defer, grant exemptions from or delay implementation of any provision that would impose a fiscal or regulatory burden on any state, individuals, families, health care providers or health insurers. A few days later, the Administration cancelled advertising and outreach activities already scheduled and paid for to promote signups during the final week of Open Enrollment in 2017; enrollment during that week declined compared to the same period in 2016. In addition to supporting Congressional repeal of the ACA and a federal lawsuit to overturn it, the Trump Administration has taken other steps to modify how it operates.

Medicaid

Overall, the Trump Administration has made efforts to reduce federal spending for Medicaid and limit eligibility through proposed legislation and budget proposals, new state demonstration waivers and its support of litigation to overturn the ACA.

Medicare

In his most recent State of the Union address, President Trump said his Administration will “protect” Medicare just as he has vowed to protect Social Security. President Trump signed into law multiple pieces of legislation that had the effect of accelerating the insolvency of the Medicare Hospital Insurance Trust Fund. The Trump Administration has proposed changes to the Medicare program, including reductions in Medicare spending through changes (or proposed changes) to provider payments, and regulatory requirements for providers and Medicare private plans (Medicare Advantage and Part D).  The Administration has issued many proposals relating to Medicare prescription drug costs, most of which have not been implemented (See more in Reducing Prescription Drug and Other Health Care Costs Section).

Reducing Prescription Drug and Other Health Care Costs

The Trump Administration has issued many proposals to lower prescription drug prices and spending, although most have not been adopted by the Congress or implemented by the Administration through the regulatory process, and pending proposals are unlikely to be adopted prior to the November election. President Trump signed into law legislation passed by Congress that banned “pharmacy gag” clauses and accelerated the phase out of the Medicare Part D “donut hole” and is moving forward with an Innovation Center model that will lower insulin costs for some Medicare beneficiaries (to take effect in 2021). In addition, the Trump Administration has moved forward on a hospital price transparency initiative that aims to give consumers better information to help lower costs.

Sexual and Reproductive Health

The Trump Administration has made efforts to reduce access to contraception by issuing regulations that allow employers to opt out of the ACA’s requirement to offer no-cost contraception in its health plans and that exclude family planning clinics that provide or refer for abortion from the Title X family planning program for low-income people. The Administration has also sought to limit access to abortion coverage and care by appointing judges opposed to abortion rights and issuing restrictive rules and regulations.

Mental Health and Substance Use

The Trump Administration has taken steps to address the opioid epidemic and high suicide rates among veterans. The Administration also supports overturning the ACA and increased the duration of short-term health plans, steps that would ultimately reduce coverage of mental health and substance use disorder services and limit the scope of mental health parity rules. President Trump also proposed budget reductions to the Substance Abuse and Mental Health Services Administration (SAMHSA) and Medicaid, key funders for substance use disorder services. Most recently, during the COVID-19 pandemic, President Trump signed legislation providing some additional funding to SAMHSA and to support mental health services for isolated veterans.

Immigration and Health

Since taking office, the Trump Administration has taken numerous actions to reshape immigration policy. These efforts have included limiting entry into the country, including restrictions for humanitarian immigrants such as refugees and asylees; enhancing interior enforcement efforts and expanding the scope of individuals targeted for removal; and discouraging legal immigrants from using public programs for which they are eligible, including Medicaid. A number of these actions have particularly significant implications for the health and well-being of immigrant families, including their children, who are primarily U.S.-born citizens.

Long-term Care

The Trump Administration has proposed changes to Medicaid financing that would have affected the program’s ability to pay for long-term services and supports. In addition, the Administration supported repeal of the ACA which would eliminate some options for states to expand access to Medicaid home and community-based services. Prior the onset of COVID-19, the Administration proposed changes to relax certain requirements for nursing homes, and subsequently relaxed additional requirements at the onset of the pandemic while imposing new ones to prevent the spread of the virus. Since March, as the number of COVID-19 deaths in long-term care facilities increased substantially, the Trump Administration issued new guidance and waivers, established a new commission to make recommendations, required nursing facilities to report cases, deaths and shortages, distributed tests to facilities and made additional funds available to nursing facilities and assisted living facilities.

HIV/AIDS Policy

President Trump has taken steps to address the domestic HIV epidemic. In 2019, he launched a new effort, the Ending the HIV Epidemic (EHE): A Plan for America, which aims to drive down new HIV infections, especially in hard hit areas, and includes new funding for domestic HIV programs. It has helped to focus new attention and resources on HIV in the United States. At the same time, other actions of the Administration, such as ongoing attempts to overturn the ACA, which has helped to expand insurance coverage for people with HIV, and the removal of protections for LGBTQ people in health care, threaten to undermine the reach of the EHE. On the global front, the President has publicly supported PEPFAR, but called for significant budget cuts to PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria each year.

LGBTQ Health

The Trump Administration has implemented or supported several policies that remove or reduce protections for LGBTQ people in in health care. Many of these actions have occurred against the backdrop of protections for “provider conscience.” In some cases, these policies have been halted or are still being considered by the courts.