Data Brief | No. 117 | May 2022

Illinois Residents Struggle to Afford High Healthcare Costs; Worry About Affording Future Care; Support Government Action across Party Lines

Key Findings

A survey of more than 1,000 Illinois adults, conducted from December 23, 2021 to January 2, 2022, found that:

• Nearly 3 in 5 (58%) experienced healthcare affordability burdens in the past year;
• 4 in 5 (80%) worry about affording healthcare in the future;
• Black/African American respondents, Hispanic/Latinx respondents and respondents with disabilities are more likely to forgo care and incur debt due to healthcare costs; and
• Across party lines, respondents express strong support for government-led solutions.

A Range of Healthcare Affordability Burdens

Like many Americans, Illinois adults experience hardship due to high healthcare costs. All told, over half (58%) of respondents experienced one or more of the following healthcare affordability burdens in the prior 12 months:

1) Being Uninsured Due to High Costs

Half (50%) of uninsured respondents cited “too expensive” as the major reason for not having coverage, far exceeding other reasons like “don’t need it” and “don’t know how to get it.”

2) Delaying or Foregoing Healthcare Due to Cost

Nearly half (49%) of total respondents reported delaying or foregoing healthcare during the prior 12 months due to cost:

• 30%—Skipped needed dental care
• 27%—Cut pills in half, skipped doses of medicine or did not fill a prescription¹
• 26%—Delayed going to the doctor or having a procedure done
• 25%—Avoided going to the doctor or having a procedure done altogether
• 24%—Skipped a recommended medical test or treatment
• 21%—Had problems getting mental healthcare or addiction treatment
• 13%—Skipped or delayed getting a medical assistive device

Moreover, cost and difficulty getting an appointment were the most frequently cited reasons for not getting needed medical care (20% of respondents, respectively), exceeding a host of other barriers like transportation and lack of childcare.

3) Struggling to Pay Medical Bills

Other times, respondents got the care they needed but struggled to pay the resulting bill. More than one-third (35%) of respondents experienced one or more of these struggles to pay their medical bills:

• 14%—Used up all or most of their savings
• 12%—Were contacted by a collection agency
• 11%—Were unable to pay for basic necessities like food, heat or housing
• 9%—Borrowed money, got a loan or another mortgage on their home
• 7%—Racked up large amounts of credit card debt
• 6%—Were placed on a long-term payment plan

Of the various types of medical bills, the ones most frequently associated with an affordability barrier were doctor bills, prescription drugs and dental bills. The high prevalence of affordability burdens for these services likely reflects the frequency with which Illinois respondents seek these services. Trouble paying for dental bills likely reflects lower rates of coverage for these services.

High Levels of Worry About Affording Healthcare in the Future

Illinois respondents also exhibit high levels of worry about affording healthcare in the future. Four in five (80%) report being “worried” or “very worried” about affording some aspect of healthcare in the future, including:

• 64%—Cost of nursing home or home care services
• 60%—Medical costs when elderly
• 60%—Health insurance will become unaffordable
• 58%—Medical costs in the event of a serious illness or accident
• 51%—Prescription drugs will become unaffordable
• 51%—Cost of dental care
• 41%—Cost of treatment for coronavirus/COVID-19

While two of the most common worries—affording the cost of nursing home or home care services and medical costs when elderly—are applicable predominantly to an older population, they were most frequently reported by respondents ages 35-44, followed by those ages 25-34. This finding suggests that Illinois respondents may be worried about affording the cost of care for aging parents in addition to themselves.

Worry about affording healthcare, generally, was highest among respondents living in low- and middle-income households and those living in households with a person with a disability (see Table 1). More than 4 in 5 (85%) of respondents with household incomes of less than $75,000 per year² report worrying about affording some aspect of coverage or care in the past year, while a striking 90% of those living in households containing someone with a physical or mental disability report having healthcare affordability concerns. Still, the vast majority of Illinois respondents of all incomes, races, ethnicities and levels of ability statewide are somewhat or very concerned.

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Concern that health insurance will become unaffordable is also more prevalent among certain groups of Illinois residents. Respondents who buy insurance on their own most frequently reported worrying about affording coverage, followed by respondents with employer-sponsored insurance (see Figure 1). Illinois respondents with household incomes between $50,000 and $100,000 per year, Hispanic/Latinx respondents and respondents living in households with a person with a disability are also most likely to be concerned (see Table 2).

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Concerns about affording coverage exceeded fears about losing coverage across all income groups, racial/ethnic groups, disability statuses, regions and coverage types.

Differences in Healthcare Affordability Burdens

The survey also revealed differences in how Illinois respondents experience healthcare affordability burdens by income, age, race/ethnicity, region and disability status.

Income and Age

Unsurprisingly, respondents at the lowest end of the income spectrum most frequently report affordability burdens, with more than two-thirds (67%) of those earning less than $50,000 reporting struggling to afford some aspect of coverage or care in the past 12 months (see Figure 2). This is, in part, due to respondents in this income group reporting the highest rates of foregoing care and rationing their medication due to cost (see Figure 3).

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Further analysis found that Illinois resondents ages 18-44 are more likely to forego care due to cost than respondents ages 45 and up (see Figure 4). Respondents ages 25-34 most frequently ration medication due to cost, compared to other groups.

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Race and Ethnicity

Black/African American and Hispanic/Latinx respondents also report higher rates of foregoing care and rationing medication due to cost when compared to white respondents (see Table 3). Further analysis showed that Hispanic/Latinx respondents had the highest rates of skipping needed medical tests/treatment and avoiding going to the doctor or having a procedure done altogether due to cost (see Figure 5).

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Both Hispanic/Latinx respondents and Black/African American respondents report higher rates of rationing medication, difficulty getting mental health treatment and delaying/doing without medical assistive devices due to cost, compared to white respondents. All groups had roughly similar rates of skipping needed dental care (28% of Hispanic/Latinx respondents, 29% of Black/African American respondents and 30% of white respondents) and problems getting addiction treatment (12% of Hispanic/Latinx and Black/African American respondents and 9% of white respondents) due to cost.

Disability Status

Of all the demographic groups measured, respondents living in households with a person with a disability reported the highest rates of foregoing care and rationing medication due to cost in the past 12 months. More than 7 in 10 (72%) of respondents in this group went without some form of care, and almost half (45%) rationed medication, compared to 40% and 19% of those in households without a person with a disability, respectively (see Table 3). Respondents living in households with a person with a disability also reported higher rates of delaying or skipping getting mental healthcare, addiction treatment and dental care, among other healthcare services, than those in households without a person with a disability due to cost concerns (see Table 4). Those with disabilities also face healthcare 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 7% of respondents without a person with a disability (who may have needed such tools temporarily or may not identify as having a disability) reported this experience.

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Likelihood of Encountering Medical Debt

The survey also showed differences in the prevalence of going into medical debt, depleting savings and being unable to pay for basic necessities (like food, heat and housing) due to medical bills by income, race/ethnicity, disability status and location. Fifty percent of Black/African American and Hispanic/Latinx respondents reported going into debt or foregoing other needs due to medical bills, compared to 31% of white respondents (see Table 5). Respondents living in households with a person with a disability had an even greater disparity, with more than half (57%) reporting going into debt or foregoing other needs due to medical bills, compared to 1 in 4 (26%) of respondents living in households without a disabled member. Geographically, Illinois respondents living in the Greater Illinois area reported higher rates of going into debt or foregoing other needs due to medical bills than respondents from Cook and the Collar counties.

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Healthcare affordability burdens often occur alongside systemic mistreatment in the health system, making it even more difficult for marginalized communities to access care. For further details, see Illinois Residents Shoulder Healthcare Affordability Burdens Unequally; Distrust of/Disrespect by Healthcare Providers Lead Some to Delay/Forgo Needed Care.

Dissatisfaction with the Health System and Support for Change

In light of their healthcare affordability burdens and concerns, it is not surprising that Illinois respondents are dissatisfied with the health system. Statewide:

• Just 39% agreed or strongly agreed that “we have a great healthcare system in the U.S.,”
• While 65% agreed or strongly agreed that “the system needs to change.”

To investigate further, the survey asked about both personal and governmental actions to address health system problems.

Personal Actions 

Illinois respondents see a role for themselves in addressing healthcare affordability. When asked about specific actions they could take:

• 57% of respondents reported researching the cost of a drug beforehand, and
• 73% said they would be willing to switch from a brand name to an equivalent generic drug if given the chance.

When asked to select the top three personal actions that would be most effective in addressing healthcare affordability (out of ten options), the most common responses were: 

• 68%—Take better care of my personal health 
• 37%—Research treatments myself, before going to the doctor 
• 33%—Do more to compare doctors on cost and quality before getting services 

Government Actions 

But far and away, Illinois respondents see government as the key stakeholder that needs to act to address health system problems. Moreover, addressing healthcare problems is a top priority that respondents want their elected officials to work on.

At the beginning of the survey, respondents were asked what issues the government should address in the upcoming year. The top vote getters were:

• 52%—Healthcare
• 47%—Economy/Joblessness
• 38%—Taxes

When asked about the top three healthcare priorities the government should work on, the top vote getters were:

• 50%—Address high healthcare costs, including prescription drugs
• 33%—Preserve consumer protections preventing people from being denied coverage or charged more for having a pre-existing medical condition
• 32%—Improve Medicare, coverage for seniors and those with serious disabilities
• 30%—Get health insurance to those who cannot afford coverage³

Of more than 20 options, Illinois respondents believe the reason for high healthcare costs is unfair prices charged by powerful industry stakeholders:

• 70%—Hospitals charging too much money
• 69%—Drug companies charging too much money
• 65%—Insurance companies charging too much money

When it comes to tackling costs, respondents endorsed a number of strategies, including:  

• 91%—Improve public health emergency preparedness
• 91%—Require insurers to provide up-front cost estimates to consumers
• 90%—Show what a fair price would be for specific procedures
• 90%—Require drug companies to provide advance notice of price increases and information to justify those increases 
• 90%—Ensure the cost of widely needed vaccines are affordable for all
• 90%—Make it easy to switch insurers if a health plan drops your doctor 

Support for Action Across Party Lines

There is remarkable support for change regardless of respondents’ political affiliation (see Table 6).

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There is also a high level of support for additional policies among respondents with all three political affiliations (see Table 7).

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The high burden of healthcare affordability, along with high levels of support for change, suggest that elected leaders and other stakeholders need to make addressing this consumer burden a top priority. Moreover, the current COVID crisis is leading state residents to take a hard look at how well health and public health systems are working for them, with strong support for a wide variety of actions. Annual surveys can help assess whether or not progress is being made.  

Notes

1.    Of the current 49% of Illinois respondents who encountered one or more cost-related barriers to getting healthcare during the prior 12 months, 20% did not fill a prescription, while 18% cut pills in half or skipped doses of medicine due to cost.

2. Median household income in Illinois was $65,886 (2015-2019). U.S. Census, Quick Facts. Retrieved from: U.S. Census Bureau QuickFacts: Illinois

3.    Nearly 2 in 3 (65% of) respondents said that they would consider using their tax forms to sign up for health insurance if they or their family needed it. This high level of interest persisted across racial, ethnic and income groups, with the highest levels of interest among Hispanic/Latinx respondents (72%) and those earning over $100,000 (70%).

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 views on fixes that might be needed.

The survey used a web panel from Dynata with a demographically balanced sample of approximately 1,000 respondents who live in Illinois. 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 1,012 cases for analysis. After those exclusions, the demographic composition of respondents was as follows, although not all demographic information has complete response rates: