As a coalition dedicated to ensuring all people, regardless of race, ethnicity, income, or identity, have access to safe, equitable, and affordable health care, we understand that health extends far beyond access to doctors, preventative care, and medicines. Health is also measured by access to resources and opportunities, and systemic divestment in communities of color across the nation have created huge disparities in health outcomes.  

Since the beginning of 2021, there have been more than 145 mass shootings in the United States. According to the American Public Health Association, gun violence is the leading cause of premature death in the United States, with more than 38,000 people losing their life to gun violence each year. Furthermore, the premature death rate in young Black men (defined as up to 20-years-old) is more than double the rate of their white counterparts.

Gun violence is a public health emergency and must be dealt with as such. The many faces of gun violence may disguise the fact that it is preventable. Whether it be mass shootings, state sanctioned killings by police, or community violence, a threat to safety is a threat to health. While these various forms of gun violence are related, the power dynamics inherent to each differ and must be uniquely addressed. Race, religion, income, gender, sexuality, disability, or citizenship status should not impact your likelihood to experience violence. Protect Our Care Illinois (POCIL) envisions a world where all communities have the resources they need to thrive without fear of violence based on racism, xenophobia, or any other form of oppression.

We cannot grow numb to the epidemic of gun violence plaguing our cities, state, and nation. We cannot turn a blind eye to the number of young people — particularly young Black men — who have lost their lives to needless violence. We cannot remain silent in the face of a crisis impacting the physical and mental health of our neighbors. POCIL continues to call upon our legislators at the state and federal levels to address this epidemic with immediacy and drastic steps to end the senseless violence plaguing our communities.

After 11 years, the Affordable Care Act (ACA) is now a fundamental part of the fabric of the American health care system, alongside Medicare and Medicaid, providing millions with access to coverage, care and critical consumer protections. The law has led to historic reductions in racial inequities in health coverage and is more popular than ever. 

Protect Our Care IL (POCIL) knows that the ACA is not something to be taken for granted. Our coalition was born four years ago out of the necessity to protect against the imminent repeal of the ACA. While we were victorious in our fight to keep the ACA as law of the land, opposition to the law still exists. The ACA still faces the threat of its demise in the Supreme Court due to the Health Care Repeal lawsuit brought by 18 Republican Attorneys General. 

POCIL stands today – 11 years into the law – committed to protect and build on the ACA to ensure that everyone in Illinois has access to equitable, affordable, comprehensive health care no matter their race, ethnicity, gender identity, sexual orientation, income or immigration status. As we continue to confront the impact of the pandemic and the stark inequities it has exposed in our health system, it is more important than ever that policymakers both in Illinois and Washington finish the job the ACA started.

Together, the new pandemic Special Enrollment Period (SEP) through May 15 and the recently passed American Rescue Plan Act offer a huge first step in providing a more affordable pathway to comprehensive coverage that was out of reach to many even before the pandemic. We encourage Illinois consumers who are not currently enrolled in health coverage, or have coverage but would like to choose a new plan, to review their options at HealthCare.Gov. Coverage is comprehensive, and might be more affordable than you think – an estimated 4 million Americans can sign up for a plan with a $0 monthly premium!  

What better way to celebrate the 11th anniversary of the ACA than to get everyone covered? If you need help, free and experienced enrollment assistance is available in your language here.  
 
To find out more and join in on the conversation, join the #TodaysVoicesTues ACA 11th Anniversary Twitter Chat at 2 pm CT on March 23rd! Use the hashtags #ProtectILCare #ACA11 

Protect Our Care Illinois (POCIL) wants to sincerely thank President Biden for signing the American Rescue Plan (ARP) and Senators Durbin, Duckworth and the members of our congressional delegation who fought for and voted for this historic bill.  

The COVID-19 pandemic has exposed the vast shortcomings of our nation’s health system and underscored the critical importance of affordable health coverage and care for all people and families. While the Affordable Care Act (ACA) and Medicaid have played an instrumental role in providing millions in Illinois with access to health care during the pandemic, the reality is too many people are still left out of our health care system or cannot afford to go to the doctor. This is especially true for people with low incomes, people with disabilities and Black, Indigenous and other people of color (BIPOC), who have borne the brunt of the pandemic and already face unjust and discriminatory barriers to health care.  

The ARP marks a historic victory as it is the first time in over a decade that the ACA and Medicaid will become more affordable, accessible and equitable. The ARP focuses on those hardest hit by the pandemic by eliminating premiums for many people with low-incomes and reducing premiums for everyone else with moderate incomes. In Illinois, 130,500 uninsured people will become newly eligible for tax credits to purchase a health plan and almost 20,000 uninsured people will now become eligible for $0 premium coverage. 

In addition to the Marketplace improvements, the bill will address maternal mortality head-on by extending Medicaid coverage for postpartum women for 12 months instead of right now where they lose coverage 60 days after birth. This is especially important for Illinois which has one of the highest maternal death rates for Black mothers than any state in the US.  

POCIL knows that there is much more work to be done to make health care more affordable, accessible and equitable for everyone in Illinois; however, the ARP is a huge step for those who need it the most. We look forward to working with Governor Pritzker and the state of Illinois to help implement the ARP and provide relief to Illinois residents. 

Protect Our Care Illinois (POCIL) believes that everyone deserves access to equitable, affordable, comprehensive health care no matter their race, ethnicity, gender identity, sexual orientation, income, ability or immigration status. We also believe that health care coverage is a right – not a privilege – and that any new health care policy that Illinois institutes should move the state toward universal coverage.

ACCESS TO HEALTH CARE

Expand Coverage for All Immigrants
Build upon the Medicaid-like expansion secured for low-income undocumented seniors by securing health care coverage for all low-income Illinoisans (ages 19-64) with household incomes of up to 138 percent Federal Poverty Line (FPL), regardless of immigration status.
Bill Number: HB3493 (Rep. D. Ramirez)

Streamline and Refine the Medicaid Enrollment Process
Work with the Illinois Department of Healthcare and Family Services (HFS) to simplify Medicaid enrollment by making COVID-era improvements (e.g., presumptive eligibility) permanent, build on past efforts to simplify redeterminations, and improve ID proofing so Illinoisans without credit histories and addresses can manage their cases.

HEALTH CARE AFFORDABILITY

Make Premium Hikes Transparent & Empower the Department of Insurance to Reject Unreasonable or Discriminatory Increases
Advance legislation that would empower the Illinois Department of Insurance (DOI) to reject unreasonable or discriminatory premium rates proposed by insurance companies for the individual and small group markets. This bill also gives Illinois consumers the opportunity for the first time to view and comment on proposed rates before they become finalized by DOI.
Bill Number: HB146 (Rep B. Morgan) / SB1590 (Sen. L. Fine)

Make Prescription Drugs More Affordable
Lower the out-of-pocket cost for Illinoisans’ prescription drugs by requiring all insurers to offer plans that use only flat-dollar / predictable co-pays for prescription drugs or require that plans have a flat-dollar co-pay cap.
Bill Number: HB1745 (Rep. G. Harris) / SB275 (Sen. S. Bennett)

RACIAL EQUITY & HEALTH JUSTICE

COVID-19 Vaccine Distribution
Ensure that the COVID-19 vaccines are equitably distributed in communities most-heavily impacted by both systemic racism, health inequity and the COVID-19 pandemic, namely those who identify as Black, Indigenous and People of Color (BIPOC).

Reduce Inequities Through Enhanced Data Collection Efforts
The Illinois Department of Public Health (IDPH) does not currently collect data related to race, sexual orientation / gender identity (SOGI) or disability status during COVID-19. In order to reduce inequities facing these communities, POCIL is calling upon IDPH to collect and publicize this data.
Bill Number: SB2133 (Sen. S. Simmons)

Health Care Affordability Study
Continue advocating for equitable policies and practices that would increase all Illinoisans’ access to safe, affordable health care coverage, but especially those who identify as Black, Indigenous and People of Color.

Founded in 2017 to combat the repeal of the Affordable Care Act (ACA), Protect Our Care Illinois (POCIL) is a diverse statewide coalition of more than 100 health-focused, people-centered organizations, all of whom are dedicated to ensuring all Illinoisans have access to high-quality, equitable, and affordable health care coverage. For more information about any of these priorities or to learn how you can join Protect Our Care Illinois, contact Logan Charlesworth, Coalition Manager, at info@protectilcare.org.

Author: Angel L. Miles, PhD

*This is the third blog in a series about the Illinois Healthcare Affordability and Feasibility Study mandated by the Illinois Healthcare Affordability Act. Previous blog posts in the series can be found here and here. 

By prohibiting discrimination of people with pre-existing conditions, the Affordable Care Act (ACA) expanded medical coverage for people with disabilities throughout the nation who were previously uninsured or underinsured. In spite of these strides towards ensuring all Americans have adequate health care coverage, significant gaps in insurance coverage and quality of care remain. The upcoming release of the Healthcare Affordability Feasibility Study conducted by the Illinois Department of Healthcare and Family Services and the Department of Insurance will provide some opportunities to improve access to affordable coverage. Protect Our Care Illinois (POCIL) firmly believes state lawmakers and administrators must use the ideas generated from the study to expand affordable coverage. Furthermore, any improvements in health care coverage must prioritize the needs of people with disabilities given the disparities that exist in coverage for this community.  

According to an IDPH report, disabled adults make up one of the largest and most diverse groups in Illinois, representing 22 percent of the population. Although people with disabilities are far more likely to have medical insurance coverage and higher rates of health care utilization than people without disabilities, they face significant barriers to receiving quality, affordable and accessible care. Nearly 21 percent of Illinoisans with disabilities reported avoiding visits to the doctor because of cost compared to 10 percent of those without disabilities. Furthermore, the Center for Medicaid and Medicare Services (CMS) found that adults with disabilities are almost twice as likely as nondisabled adults to report unmet health care needs due to problems with accessibility. A different study from the Urban Institute and Robert Wood Johnson Foundation similarly reported that compared to nondisabled adults, adults with disabilities are about three times more likely to report unmet health care needs because a medical provider would not accept their medical insurance compared to other insured adults without a reported disability. Clearly, people with disabilities are a health disparities population.

Adults with disabilities have higher rates of unemployment, underemployment and poverty. In the state of Illinois specifically, 26 percent of working age people with a disability live below the poverty line, compared to approximately 12 percent of working age people without a disability and just 35 percent of Illinoisans with disabilities are employed compared to 76 percent of people without disabilities. 

Despite this economic disadvantage, people with disabilities tend to have more out-of-pocket health care costs than people without disabilities. One study found that compared to their nondisabled counterparts adults with disabilities fill more than five times as many prescription drugs, with mean prescription expenditures nearly seven times higher ($4,006 vs $599).

Accessibility and affordability barriers to health care contribute significantly to health disparities within the disability community. Adults with disabilities are four times more likely to report that their health is fair or poor compared to adults without disabilities. This issue is compounded by race. For example, one study found that about 50 percent of Latinx and Black people with disabilities rated their health status as fair or poor, compared to 42 percent of non-Hispanic, white individuals with disabilities. Research suggests that racial and ethnic minorities with disabilities are more likely to report that they are in fair or poor health, obese, have a chronic health condition, and have greater difficulty accessing care than do racial and ethnic minorities without a disability. 

These findings are especially concerning considering that people with disabilities who are Black, Indigenous and People of Color have the highest rates of disability in the country. In Illinois the disability rate by race is approximately 8 percent for white working age adults, 14 percent for Black/African American working age adults, 16 percent for persons who are Native American, 3 percent for persons who are Asian American and 8 percent for people who identify as some other race. Factors contributing to higher rates of disabilities in Black and Indigenous communities include higher rates of poverty, less access to quality health care, higher likelihood of participating in dangerous jobs and other risk factors associated with social determinants of health.

Adults with disabilities also face unique attitudinal barriers to care, as reflected in The Urban Institute’s Health Reform Monitoring Survey which found that about 24 percent of adults with disabilities reported experiencing disrespectful treatment or felt judged unfairly compared to just 8 percent of the general population.

Despite the massive inequities that people with disabilities experience in the state of Illinois and throughout the nation, there remains a pervasive belief that people with disabilities cannot achieve a state of health and wellness and that when they exhibit poor health it is solely an unavoidable and natural outcome of disability, rather than an outcome of systemic inequality based on disability status. This assumption masks how institutional barriers and biased practices contribute to health disparities for people with disabilities. Health care policy, research and practice must challenge disability bias by responding to the real structural, financial and cultural barriers that people with disabilities experience when trying to access care. These barriers include limited availability of accessible health care facility structures and equipment, limited staff training and restrictive health care policies and practices that do not take into account the full spectrum of diversity of people with disabilities and their needs. 

Future Illinois health care reform must consider disability accessibility as a social determinant of health throughout plan design. It must explicitly state that the disability community is a population that experiences health disparities, prioritize closing these health gaps as part of its equity goals, and clearly outline how. Improve disability data collection by using standardized disability identifiers across surveys, including people with disabilities in general health research and increasing the amount and coordination of disability research. Illinois health care reform must establish health plans that ensure the services and facilities associated with them meet the needs of people with multiple types of disabilities and are compliant with the accessibility and nondiscrimination standards established by state and Federal laws, including Section 504 of the Rehabilitation Act, the Americans with Disabilities Act and the ACA. It must include home and community based services (HCBS) as a right not just a state “option,” ensure that health care plans and services adequately cover the full range of costs for HCBS, and the equipment and supplies associated with HCBS care such as complex rehabilitation technology, incontinence supplies, home modifications and more. Then and only then will people with disabilities in Illinois have equitable access to health care that can be considered feasible, accessible and affordable. To join us in this fight, sign up to receive our newsletter or consider joining the coalition.

On Wednesday, February 17, Governor JB Pritzker delivered a combined annual Budget Address and State of the State virtually to constituents and members of the 102^nd General Assembly. Protect Our Care Illinois (POCIL) was pleased to hear the governor’s praise of the frontline health care and social service providers working to ensure all residents have access to COVID-19 testing, vaccinations, shelter and nutrition support. We continue to mourn the death of over 20 thousand Illinoisans, who have lost their lives to the COVID-19 pandemic and are holding their loved ones in our hearts and minds.  

We commend Governor Pritzker on: 

• His commitment to equitable vaccine distribution to address disparities in access and acknowledging the historical disinvestment in communities of color;  
• Maintaining FY2021 levels of funding for state agencies’ services to individuals in need 
• His desire to increase sources of revenue by implementing a progressive income tax in Illinois and closing corporate tax loopholes 

While we understand the state faces significant fiscal challenges in the coming years, we applaud the leadership of Governor Pritzker and his administration in ensuring that no one loses their Medicaid health care coverage in Illinois — especially in a pandemic. As lawmakers face the tough choices that will need to be made concerning the state’s budget, the coalition is dedicated to ensuring that the communities hardest hit by the pandemic aren’t further impacted by the hollowing out the state’s health and human services sector. The coalition stands in firm support of efforts to improve the Medicaid program in Illinois and making lasting changes to increase health care coverage and decrease the skyrocketing cost of prescription drugs in Illinois.  

We urge the Pritzker administration to support comprehensive policy and program solutions that increase health care coverage, affordability and access for all Illinoisans. Specifically, people who are ineligible for health care coverage through the Medicaid program due to immigration status must be provided affordable, quality options for health care coverage. We also believe that telehealth expansions during the pandemic need to be permanent in private health plans, and that the next state budget must include funding for health care navigators. 

Additionally, POCIL is grateful that the Illinois Department of Healthcare and Family Services (HFS) has steps in place to make the pandemic telehealth coverage provisions a permanent benefit for Medicaid plans. We look forward to working with the Pritzker administration and legislative partners in the General Assembly to enact these budgetary priorities and continue to bring to life the vision of true health equity in Illinois. 

By: Timothy Jackson, Director of Government Relations, AIDS Foundation Chicago

Across every corner of Illinois — from Metro East, southern Illinois, and the Quad Cities to central Illinois, the suburban collar counties, and Chicago — families are being crushed by the rising costs of healthcare and prescription drugs. 

The skyrocketing costs of prescription drugs often places the life-saving treatments out of reach for those with chronic conditions. People living with cancer, HIV, epilepsy, Parkinson’s disease and other conditions pay thousands of dollars each month to stabilize their conditions to reach positive health outcomes. We know that when the costs of these life-saving medications far exceed the incomes of those who need them, Illinoisans are faced with making drastic decisions to ration doses or miss them altogether. The consequences of these decisions often contribute to health conditions worsening and results in unhealthy communities. 

As I stated earlier, the rising cost of prescription drugs is an issue that affects every sector of our state. Polling conducted across Illinois in early 2020 (pre-COVID) found that over half of Illinoisans reported experiencing a health care affordability burden and one in four ration or skip prescription medications due to high costs. Additionally, over 70 percent of Illinoisans indicated that the major reason for rising health care costs were related to drug companies charging too much money. When you break down this question across political affiliations, polling found that 67 percent of Republicans believe that drug companies charge too much money contrasted with 74 percent of Democrats. What’s even more troubling is that in nationwide polling, 9 in 10 U.S. adults are “very” (55 percent) or “somewhat” (33 percent) concerned that Big Pharma will use the COVID-19 pandemic to raise prescription drug prices.

Reigning in the cost of prescription drugs is not a partisan issue. This issue doesn’t just affect the rural communities of our state, the suburbs or the inner city of Chicago. This is an issue that requires wholesale reforms to bring the relief to Illinois families they need and deserve. Simply put, prescription drugs don’t work if you can’t afford them!

As we begin the discussions necessary to move our state forward on this issue, I am reminded of a March 2020 hearing of the Illinois House Prescription Drug Affordability & Accessibility Committee. The committee was debating whether the State should implement a Prescription Drug Affordability Board (PDAB) to review the costs of prescription drugs to make sure they are affordable. One member of the Committee that strongly opposed this measure indicated “to what end” would “barriers” be put into place to stifle innovation of the pharmaceutical industry. Although nearly a year has passed, I am still as dumbstruck by those comments as I was the day that they were initially uttered. Although this legislator took an oath to serve the people of Illinois, they were far more concerned about Big Pharma than they were their own constituents.

But it’s an interesting thought: to what end? To what end will we continue to see Illinoisans go without the prescription drugs they need to live full and healthy lives? To what end will we continue to see Illinois families have to choose between purchasing badly needed prescription drugs or paying their rent? To what end will we continue to see our neighbors not get the medical assistance and prescription drugs they require? To what end will we continue to sit idly by and allow Big Pharma to line their pockets at the expense of Illinois families who are left holding the bag of empty prescription bottles?

The late civil rights leader Dr. Martin Luther King, Jr. once stated that “the time is always right to do what is right.” The time for action on common sense solutions to drive down the costs of prescription drugs and ensure access to quality health care coverage is now. As a state, it is our moral imperative to right these wrongs so that Illinois families aren’t having to make life and death decisions between buying the medications that will treat their illnesses or buying groceries for the week. 

Protect Our Care Illinois, a statewide coalition of health care advocates, providers, consumers and workers, is committed to meeting these challenges by supporting legislation that reduces health care costs for consumers. However, we are going to need your help! If you agree that the cost of prescription drugs are unsustainable and out of control, we encourage you to join in the coalition’s efforts to lower drug costs.

Because to what end do we continue to allow profits of Big Pharma to be valued more and take precedence over the people of Illinois? For those with chronic conditions, seniors, veterans, our children and the communities that often reside on the margins of our society, I sincerely hope that end is near.

*This is the second blog in a series about the Illinois Healthcare Affordability and Feasibility Study mandated by the Illinois Healthcare Affordability Act. The first blog post can be found here. 

The disproportional impact of COVID-19 on people of color, especially Black and Latinx people in Illinois, highlights the systemic racism embedded in our health care system. Protect Our Care Illinois is dedicated to ensuring quality, affordable, and equitable health care for all Illinoisans regardless of race or immigration status. To achieve this vision, Protect Our Care Illinois demands equitable distribution of and access to the COVID-19 vaccine, as this is a key step in combatting the disastrous effects of the pandemic on our communities. 

Governor Pritzker and the Illinois Department of Public Health (IDPH) have worked diligently to prepare a vaccine distribution plan that prioritizes administering the limited supply of vaccine doses to the most at-risk populations first, including senior citizens and health care workers. However, the plan falls short in addressing how the state will ensure equitable access to people of color, especially Black and Latinx communities, and this must be improved immediately.  

If the differing rates of flu vaccinations among different races are any indicator, Black and Latinx people are less likely to receive a COVID-19 vaccine if offered. Why? Many reasons exist, but an unresolved history of both structural and sometimes interpersonal harm towards Black and Latinx communities perpetrated by the government and health care institutions has resulted in widespread distrust of the health care system. For example, 70% of Black people in a survey said they think the health care system treats people unfairly based on their race or ethnic background, compared to about 40% of white and Latinx people. Additionally, Black, Indigenous and People of Color are more likely to experience access related challenges such as geographic barriers, lack of transportation, or language barriers. A recent survey shows 53% of white people are willing to take the vaccine, compared to only 24% of Black people and 34% of Latinx people. As of mid-January 2021, data regarding the demographics of those who have received at least one dose of the COVID-19 vaccine has not been released yet. 

The Governor’s office and IDPH must address the above concerns. Protect Our Care Illinois recommends the following: 

• Implementing a communication plan to address vaccine hesitancy and medical mistrust among Black, Indigenous and people of color;  
• Distributing vaccines based on zip code, as opposed to being based solely on the county or city level, to ensure that communities that have been segregated within cities and counties are able to access vaccines equitably; 
• Creating mobile or pop-up locations to deliver COVID-19 vaccinations in those zip codes that have insufficient access to hospitals, pharmacies, medical centers, or clinic spaces;  
• Requiring employers to provide paid time-off to receive the vaccine and recover from side-effects if necessary; 
• Providing widespread information about how to access the vaccine for free; and  
• Continuing to update the IDPH COVID-19 Vaccine Administration Data website with the most current, transparent, and detailed data, including, if possible, demographic information such as zip code, race, sexual orientation, gender identity and disability status of the population vaccinated. 

Ensuring equitable access to the vaccine is the first step in the long road to affordable and accessible care for all in Illinois. The Affordability and Feasibility Study currently being conducted by the Department of Health and Family Services (HFS) and the Department of Insurance (DOI) will provide Illinois legislators and administrators with ideas about how to lower health care costs. HFS and DOI agreed to conduct the study with a racial equity lens, centering the questions asked and recommendations provided in terms of the effect on people of color, especially Black people in Illinois. A group of consumers provided recommendations to HFS that included specific ideas to address both interpersonal and systemic racism in health care, such as:  

• Providers who look like their patients;
• Care that is geographically close to patients; 
• Providers listening to patients, treating patients as the experts of their bodies; 
• Translators available for multiple languages, including American Sign Language;
• Protecting personal information and understanding that certain groups of people (for example, undocumented immigrants) may be hesitant to provide personal data; and 
• Better understanding of provider networks and the health services covered by plans 

Protect Our Care Illinois is pleased that HFS and DOI are considering race equity in the affordability study and we will monitor the release and implementation of the study’s recommendations to ensure racial equity is promoted. Additionally, Protect Our Care Illinois thanks the Governor’s office and the IDPH for its willingness to receive recommendations on how to best distribute the COVID-19 vaccine, and centering race equity throughout the distribution process. Now is the time to act on the ideas suggested.  

To receive updates from Protect Our Care Illinois, sign up here. To join the coalition, sign up here. 

Four years ago, the future of health care access in the United States was in extreme peril. The incoming Trump administration’s harmful and pervasive anti-health care rhetoric put the future of the Affordable Care Act – and the health care of millions of Americans – in jeopardy, with no clear plan to help those who may lose access to coverage as a result of its dismantling.

In an attempt to combat the misinformation being spouted by the Trump administration about the Affordable Care Act and to hold elected officials accountable, more than 50 organizations united to form Protect Our Care Illinois, including lead agencies Access Living, ACLU of Illinois, AIDS Foundation Chicago, Chicago Coalition for the Homeless, EverThrive Illinois, Health & Medicine Policy Research Group, Heartland Alliance, Illinois Coalition for Immigrant and Refugee Rights, Legal Council for Health Justice, SEIU Healthcare Illinois Indiana, the Shriver Center on Poverty Law, and Thresholds.

As the Trump administration sunsets and the incoming Biden administration rises to take its place, we hold fast to the hope that many of the wrongs and harms perpetrated against millions of our neighbors – especially those in low-income, immigrant, and LGBTQ+ communities – will be rectified in the coming weeks, months and years.

Protect Our Care Illinois is dedicated to seeing this work and healing through, just as we were four years ago. We invite you to join us on the journey to ensure every Illinoisan has access to quality, affordable, and equitable health care coverage.

Given the landscape of health insurance and health care costs in Illinois, the Health Care Affordability Act, effective July 7, 2020, mandated that the Illinois Department of Health and Family Services (HFS) and the Department of Insurance (DOI) conduct a Healthcare Affordability Feasibility Study. This study will research how the state can make insurance more affordable and accessible in Illinois by researching what other states do and considering options based on Illinois-specific data. The study will provide a report with an array of options to the Illinois General Assembly and the Governor by February 28, 2021, which can be used by legislators to guide decision-making regarding insurance policies in Illinois. 

Affordable and accessible health care has been a priority for Illinoisans for decades. Even with the financial assistance provided by the Affordable Care Act, premiums, deductibles and cost-sharing are still too high for many families. A recent survey reveals that uninsured Illinoisans cite high costs as the main reason for not having insurance. The burden of cost affects families of all income levels, but especially those with incomes below 200% of the federal poverty line. In fact, nearly 15% of people with incomes below 200% of the federal poverty line are uninsured in Illinois. Even for those with insurance, the cost of health care remains prohibitive for many people. In a 2020 survey of Illinoisans, 49% of respondents reported delaying going to the doctor, skipping the dentist, or choosing to not fill a needed prescription to help curb out of pocket costs. Additionally, the COVID-19 pandemic has resulted in the largest loss of employer-sponsored health insurance in American history. 186,000 workers in Illinois lost their insurance coverage when they lost their jobs in Spring 2020. 

Despite the advances in insurance coverage for many people as a result of the Affordable Care Act, problems persist in Illinois, including prohibitively high costs, insurance and service provider systems that are often narrow, confusing, and time-consuming to navigate, and increasing rates of uninsured children. Additionally, clear disparities exist in insurance coverage. In 2018, 5.8% of white people were uninsured, compared to 6.9% of Asian people, 8.3% Black people, 12.5 % of American Indian and Alaskan Native people, 13.5% of Native Hawaiian and Pacific Islander people, and 15.4% of Hispanic people. Immigrant communities often face an additional burden of lack of citizenship status as a barrier to accessing coverage. In 2018, 23% of documented immigrants and 45% of undocumented immigrants reported being uninsured, compared to 9% of U.S. citizens. Disparities also exist for people with disabilities, who are 4 times more likely to report their health to be fair or poor than people with no disabilities (40.3% vs 9.9%). Additionally, LGBTQQIA+ people are disproportionately affected but more research is needed to understand the gaps in coverage. Studies show that more LGB people became insured as a result of the ACA, but in 2016 about 10% of LGB people were still uninsured. Disparities persist for the transgender population as well. Transgender people are more likely to be uninsured than the general population, and more likely to have trouble using their insurance to access care. 

The Affordability Study provides a chance to learn about potential solutions. Member Organizations of Protect Our Care Illinois provided feedback to HFS and DOI about the study, both in the form of submitting written recommended guiding principles, as well as through hosting two listening sessions between community members and HFS and DOI. The feedback from participants of the listening sessions made it clear: dental and vision care should be included in any health care plan, the cost of prescription drugs are too high, provider networks for Medicaid are too small, and barriers to full coverage for immigrant communities are insurmountable. We need solutions. Meaningful access to comprehensive health care is paramount for Illinoisans across the state. Protect Our Care Illinois believes that everyone deserves access to equitable, affordable, comprehensive healthcare no matter their race, ethnicity, gender identity, sexual orientation, income, ability, or immigration status. We also believe that health care coverage is a right – not a privilege – and will continue to push for new health care policies that move the state toward universal coverage.  We look forward to the results of the Affordability Study which will add to the conversation about health care in Illinois and lead us towards more affordable and accessible care.

To join us in this fight, sign up to receive our newsletter or consider joining the coalition. Stay tuned for more blogs related to the Affordability Study in the coming weeks!