Data Brief | No. 151 | January 2023

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

A survey of more than 1,100 California, conducted from November 3, 2022 to November 15, 2022 revealed that: 

• One-third (34%) of respondents reported that their provider never, rarely or only sometimes treats them with respect.  
• Half (50%) of BIPOC respondents reported distrusting or feeling disrespected by a healthcare provider in the past year, compared to only 23% of white, non-Hispanic respondents. 
• 40% of respondents who have/are living with a person with a disability went without care due to distrust or disrespect, compared to 17% of those without a household member with a disability. 
• Over half (57%) of California respondents have experienced one or more healthcare affordability burden in the past 12 months. Four in five (81%) worry about affording some aspect of healthcare now or in the future.  
• 60% of BIPOC respondents experienced one or more healthcare affordability burdens compared to forty-one percent of white non-Hispanic/Latino/a respondents. In addition, 63% of Hispanic/Latino/a respondents have experienced one or more healthcare affordability burdens compared to 53% of non-Hispanic/Latino/a respondents.  
• Twenty-five percent of BIPOC respondents skipped needed medical care due to distrust of or feeling disrespected by healthcare providers, compared to 8% of white, non-Hispanic/Latino/a respondents. 
• Seventy 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. healthcare system. 

Difference in Affordability Burdens and Concerns

Race 

Racial disparities in healthcare and affordability issues impact access to care and lead to financial burdens for communities of color, particularly Black and Hispanic/Latino/a communities.^1,2 In California, respondents of color reported higher rates of affordability burdens than white respondents, including higher rates of rationing medication due to cost; delaying or going without care due to cost; and 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 rationing medication, respondents of color more frequently reported difficulty getting mental health treatment and delaying/going without medical assistive devices due to cost, alongside problems getting addiction treatment and going without dental care (see Figures 1, 2, and 3).³  

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Income 

The survey also revealed differences in how California respondents experience healthcare affordability burdens by income. Unsurprisingly, respondents at the lowest end of the income spectrum most frequently reported affordability burdens, with over two-thirds (70%) of those with household incomes of less than $50,000 per year reporting struggling to afford healthcare in the past 12 months (see Table 2). Still, roughly half of respondents living in middle- and high-income households reported struggling to afford some aspect of coverage or care, demonstrating that affordability problems go far up the income ladder. At least 73% of respondents in each income group reported being worried about affording healthcare either now or in the future.  

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Respondents living in lower-income households also more frequently reported rationing care due to cost. Well over half (63%) of lower-income earners reported delaying or going without at least one healthcare service or treatment due to cost in the past year, compared to less than half (38% to 45%) of those earning over $75,000. Additionally, nearly 1 in 3 (31%) 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, compared to fewer than 1 in 5 respondents in other higher income brackets.  

Lower-income individuals also most frequently reported financial consequences after receiving healthcare services—up to 43% of individuals who earn less than $50,000 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 up to 30% of those earning over $75,000.  

Disability Status 

People with disabilities interact with the healthcare 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  

California respondents who have or live with a person with a disability more frequently reported a diverse array of affordability burdens compared to others (see Table 3). These individuals also more frequently reported worrying about healthcare affordability in general (86% versus 79%) and losing health insurance specifically (48% versus 27%). 

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Those with disabilities also face healthcare affordability burdens unique to their disabilities—27% 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 7% 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 4). Similarly, 28% of respondents reporting a person with a disability in their household reported problems getting mental healthcare compared to 12% of households without a person with a disability. 

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Gender 

The survey also surfaced differences in healthcare affordability burdens and worry by gender.  Those who identified as women reported slightly higher rates of experiencing at least one affordability burden in the past year than those identifying as men (58% versus 55%) (see Table 4). Those who identify as women also more frequently reported delaying or going without care due to cost in general and reported slightly higher rates of rationing their medications by not filling a prescription, skipping doses or cutting pills in half than those identifying as men.

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While most respondents reported being somewhat or very concerned, a higher percentage of those who identified as women reported worrying about affording some aspect of coverage or care than those who identified as men (84% versus 77%). 

Due to the small sample size, this survey could not produce reliable estimates exclusively for transgender or genderqueer/nonbinary respondents. However, it is important to note that these groups experience unique healthcare affordability burdens—1% of survey respondents (11 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 healthcare provider may impact whether they seek needed care. In California, one-third of (34%) respondents reported that their provider never, rarely or only sometimes treats them with respect. When asked why they felt healthcare providers did not treat them with respect, nearly half of respondents cited their race (47%), followed by their income or financial status (40%), ethnic background (37%), physical, mental or cognitive disability (16%) and gender/gender identity (16%). In lesser numbers, respondents cited experience with violence or abuse (6%) and sexual orientation (6%) 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 healthcare providers than their white or non-disabled counterparts (see Table 5). They also more frequently went without medical care due to that distrust and/or disrespect. 

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Twenty-five percent of respondents of color skipped needed medical care due to distrust of or feeling disrespected by healthcare providers, compared to 8% of white, non-Hispanic/Latino/a respondents. 

Additionally, 40% of respondents who have/are living with a person with a disability went without care due to distrust or disrespect, compared to 17% of those without a household member with a disability.  

Respondents who purchase their own health insurance reported higher rates of distrusting or feeling disrespected by a healthcare provider compared to those with other types of insurance. Respondents earning less than $50,000 most frequently reported distrust/disrespect as well as going without care due to distrust/disrespect. 

Individual and Systemic Racism 

Respondents perceived that both individual and systemic racism exist in the U.S. healthcare system. Seventy 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: 

• Nearly 1 in 4 (24%) cited policies and practices built into the healthcare system;  
• Over 1 in 4 (26%) cited the actions and beliefs of individual healthcare providers; and 
• Over half (52%) 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 70% of respondents agree or strongly agree that the U.S. healthcare system needs to change. Understanding how the healthcare system disproportionately harms some groups of people over others is key to creating a fairer and higher value system for all.   

Making healthcare 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 California respondents want their policymakers to pursue, see: California Residents Struggle to Afford High Healthcare Costs; Worry About Affording Healthcare in the Future; Support a Range of Government Solutions Across Party Lines, Healthcare Value Hub, Data Brief No.149 (January 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 November 3 to November 15, 2022, used a web panel from online survey company Dynata with a demographically balanced sample of approximately 1,249 respondents who live in California. 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 1,129 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.