Data Brief | | August 2023

Utah Residents Bear Health Care Affordability Burdens Unequally; Distrust of/Disrespect by Health Care Providers Leads Some to Delay/Go Without Needed Care

Key Findings

A survey of more than 1,300 Utah adults, conducted from May 18 to June 3, 2023, found that:

• Nearly seven out of ten (69%) Utah respondents have experienced one or more health care affordability burdens in the past 12 months. Four in five (86%) worry about affording some aspect of health care now or in the future.
• Respondents of color experienced greater affordability burdens than their white, non-Hispanic counterparts: 73% of respondents of color have experienced one or more health care affordability burdens in the past 12 months, including 79% of Hispanic/Latino respondents, compared to 68% of white, non-Hispanic respondents.
• Respondents living in households with a person with a disability more frequently reported affordability burdens than respondents without a disabled household member, including: rationing medication due to cost (49% versus 28%); delaying or going without care due to cost (77% versus 56%); and going into medical debt, depleting savings or sacrificing basic needs due to medical bills (60% versus 37%).
• Twenty-nine percent of respondents of color skipped needed medical care due to distrust of or feeling disrespected by health care providers, compared to 20% of white, non-Hispanicrespondents.
• Fifty-seven percent of all respondents think that people are treated unfairly based on their race or ethnic background somewhat or very often in the U.S. health care system.

Difference in Affordability Burdens & Concerns

Race 

The intersection of racial disparities in health care and affordability issues impact access to care and may
contribute to financial burdens for communities of color, particularly Black and Hispanic/Latino
communities.^1,2 In Utah, respondents of color reported higher rates of some affordability burdens than
white respondents, including incurring medical debt, depleting savings, or sacrificing basic needs (like
food, heat and housing) due to medical bills (see Table 1).

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In addition to incurring medical debt, respondents of color slightly more frequently reported difficulty getting select types of care compared to white, non-Hispanic respondents. For example, Hispanic/Latino respondents also most frequently reported challenges accessing mental health care and addiction treatment, as well as avoiding going to the doctor or getting a procedure done to cost (see Figure 1).³ 

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Income 

The survey also revealed differences in how Utah respondents experience health care affordability
burdens by income. Unsurprisingly, respondents at the lowest end of the income spectrum most
frequently reported affordability burdens, with over three-fourths  (79%) of those with household incomes of less than $50,000 per year struggling to afford health care in the past 12 months (see Table 2). Still, over half of respondents living in middle- and high-income households also reported struggling to afford some aspect of coverage or care, demonstrating that affordability burdens impact people all income groups. Likewise, at least 81% of respondents in each income group reported being worried about affording health care either now or in the future.

Additionally, greater than two fifths (42%) of respondents with household incomes of $50,000 or less
reported not filling a prescription, skipping doses of medicines, or cutting pills in half due to cost. Lower-
and middle-income respondents  also most frequently reported financial consequences after receiving
health care services—54% of respondents  who earned between $50,000 and $75,000 a year either went
into medical debt, depleted their savings, or sacrificed other basic needs (like food, heat or housing) due
to medical bills, compared to 36% of those earning over $100,000.  

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Disability Status 

People with disabilities interact with the health care system more often than those without disabilities and,
as a result, tend to face more out-of-pocket costs.⁴ Additionally, people who receive disability benefits
face unique coverage challenges that impact their ability to afford needed care, such as the possibility of
losing coverage if their household income or assets increase over a certain amount (for example, after
getting married).⁵ Utah respondents who have or live with a person who has a disability more frequently
reported a diverse array of affordability burdens compared to others (see Table 3). These respondents  also more frequently reported worrying about future health care affordability in general (92% versus 84%) and losing health insurance specifically (46% versus 29%). 

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Those with disabilities also face health care affordability burdens unique to their disabilities—29% of
respondents reporting a disability in their household delayed getting a medical assistive device such as a
wheelchair, cane/walker, hearing aid or prosthetic limb due to cost. Just 8% of respondents without a
disability (who may have needed such tools temporarily or may not identify as having a disability) reported
this experience (see Figure 2). Similarly, 37% of respondents reporting a disability in their household
reported problems getting mental health care compared to 22% of households without a person with a
disability.

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Gender 

The survey also surfaced differences in health care affordability burdens and worry by gender. Women
who responded to the survey reported higher rates of experiencing at least one affordability burden in the
past year than those identifying as men (72% versus 65%) (see Table 4). Women also more frequently
reported delaying or going without care due to cost in general and reported higher rates of rationing their
medications by not filling a prescription, skipping doses, or cutting pills in half. While many respondents
regardless of gender reported being somewhat or very concerned about health care costs, a higher
percentage of women reported worrying about affording some aspect of coverage or care than men (88%
versus 84%).

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Due to the small sample size, this survey could not produce reliable estimates exclusively for transgender,
genderqueer, or nonbinary respondents. However, it is important to note that these groups experience
unique health care affordability burdens— 29 (<1% of) survey respondents reported that they or a family
member had trouble affording the cost of gender-affirming care, such as hormone therapy or
reconstructive surgery. 

Distrust and Mistrust in the Health System

Whether a patient trusts and/or feels respected by their health care provider may impact whether they
seek needed care. In Utah, just over 1 in 3 (29% of) respondents reported that their provider never, rarely,
or only sometimes treats them with respect. When asked why they felt health care providers did not treat
them with respect, over two fifths of these respondents cited their income or financial status (48%),
followed by disability (25%), gender/gender identity (22%), ethnic background (18%), and race (16%). In
lesser numbers, respondents cited experience with violence or abuse (12%) and sexual orientation (11%) as reasons for the disrespect.

Respondents of color and those with a person with a disability in their household more frequently
reported distrust in and feeling disrespected by their health care providers compared to white
respondents those without a disabled household member (see Table 5). They also more frequently went
without medical care due to that distrust and/or disrespect.

Overall, 29% of respondents of color reported going without needed medical care due to distrust of or
feeling disrespected by health care providers, including 32% of Hispanic/Latino respondents, compared to
only 20% of white, non-Hispanic respondents. Additionally, 39% of respondents who have or are living
with a person with a disability went without care due to distrust or disrespect, compared to 14% of those
without a household member with a disability.

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Respondents covered through Healthy U Medicaid reported the highest rates of distrusting or feeling
disrespected by a health care provider compared to other insurance types. In addition, respondents
earning less than $50,000 most frequently reported distrust/disrespect and going without care due to
distrust/disrespect, although middle- and high-income earners also reported this issue. 

Individual & Systemic Racism 

Respondents perceived that both individual and systemic racism exist in the U.S. health care system. Fifty-seven percent of respondents believe that people are treated unfairly based on their race or ethnic
background, either somewhat or very often. When asked what they think causes healthcare systems to
treat people unfairly based on their race or ethnic background:

• 1 in 5 (18%) cited policies and practices built into the health care system;
• 1 in 6 (15%) cited the actions and beliefs of individual health care providers; and
• Over 2 out of 5 (44%) believe it is an equal mixture of both. 

Dissatisfaction with the Health System and Support for Change

Given this information, it is not surprising that 73% of Utah respondents agree or strongly agree that the
U.S. health care system needs to change. Understanding how the health care system disproportionately
harms some groups of people over others is key to creating a fairer and higher value system for all.
Making health care affordable for all residents is an area ripe for policymaker intervention, with
widespread support for government-led solutions across party lines. For more information on the types of
strategies Utah residents want their policymakers to pursue, see: Utah Residents Struggle to Afford High
Healthcare Costs; Worry about Affording Healthcare in the Future; Support Government Action across PartyLines, Healthcare Value Hub, Data Brief No. 155 (August 2023). 

Notes 

1. Fadeyi-Jones, Tomi, et al., High Prescription Drug Prices Perpetuate Systemic Racism. We Can Change It, Patients for Affordable Drugs Now (December 2020), https://patientsforaffordabledrugsnow.org/2020/12/14/drug-pricing-systemic-racism/  
2. Kaplan, Alan and O’Neill, Daniel, “Hospital Price Discrimination Is Deepening Racial Health Inequity,” New England Journal of Medicine—Catalyst (December 2020), https://catalyst.nejm.org/doi/full/10.1056/CAT.20.0593  
3. A small share of respondents also reported barriers to care that were unique to their ethnic or cultural backgrounds. Two percent reported not getting needed medical care because they couldn’t find a doctor of the same race, ethnicity or cultural background as them and three percent because they couldn’t find a doctor who spoke their language. 
4. Miles, Angel L., Challenges and Opportunities in Quality Affordable Healthcare Coverage for People with Disabilities, Protect Our Care Illinois (February 2021), https://protectourcareil.org/index.php/2021/02/26/challenges-and-opportunities-in-quality-affordable-health-care-coverage-for-people-with-disabilities/  
5. A 2019 Commonwealth Fund report noted that people with disabilities risk losing their benefits if they make more than $1,000 per month. According to the Center for American Progress, in most states, people who receive Supplemental Security are automatically eligible for Medicaid. Therefore, if they lose their disability benefits they may also lose their Medicaid coverage. Forbes has also reported on marriage penalties for people with disabilities, including fears about losing health insurance. See: Seervai, Shanoor, Shah, Arnav, and Shah, Tanya, “The Challenges of Living with a Disability in America, and How Serious Illness Can Add to Them,” Commonwealth Fund (April 2019), https://www.commonwealthfund.org/publications/fund-reports/2019/apr/challenges-living-disability-america-and-how-serious-illness-can; Fremstaf, Shawn and Valles, Rebecca, “The Facts on Social Security Disability Insurance and Supplemental Security Income for Workers with Disabilities,” Center for American Progress (May 2013), https://www.americanprogress.org/article/the-facts-on-social-security-disability-insurance-and-supplemental-security-income-for-workers-with-disabilities/; and Pulrang, Andrew, “A Simple Fix For One Of Disabled People’s Most Persistent, Pointless Injustices,” Forbes (April 2020), https://www.forbes.com/sites/andrewpulrang/2020/08/31/a-simple-fix-for-one-of-disabled-peoples-most-persistent-pointless-injustices/?sh=6e159b946b71  

Methodology

Altarum’s Consumer Healthcare Experience State Survey (CHESS) is designed to elicit respondents’ unbiased views on a wide range of health system issues, including confidence using the health system, financial burden and possible policy solutions.   

This survey, conducted from May 18 to June 3, 2023, used a web panel from online survey company Dynata with a demographically balanced sample of approximately 1,504 respondents who live in Utah. Information about Dynata’s recruitment and compensation methods can be found here. The survey was conducted in English or Spanish and restricted to adults ages 18 and older. Respondents who finished the survey in less than half the median time were excluded from the final sample, leaving 1,368 cases for analysis. After those exclusions, the demographic composition of respondents was as follows, although not all demographic information has complete response rates:

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Percentages in the body of the brief are based on weighted values, while the data presented in the demographic table is unweighted. An explanation of weighted versus unweighted variables is available here. Altarum does not conduct statistical calculations on the significance of differences between groups in findings. Therefore, determinations that one group experienced a significantly different affordability burden than another should not be inferred. Rather, comparisons are for conversational purposes. The groups selected for this brief were selected by advocate partners in each state based on organizational/advocacy priorities. We do not report any estimates under N=100 and a co-efficient of variance more than 0.30.