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Press release: new survey shows Illinoisans experiencing health care affordability crisis

SPRINGFIELD– A majority of Illinoisans have difficulty affording health care and prescription drugs according to a new Consumer Healthcare Experience State Survey (CHESS) commissioned in January 2020 by Protect Our Care Illinois and Altarum’s Healthcare Value Hub, with the support of the Robert Wood Johnson Foundation. The survey found that over half (56 percent) of Illinois adults experienced healthcare affordability burdens in the past year and four out of five (81 percent) are worried about affording healthcare in the future. For most respondents, addressing the high cost of healthcare is their top priority for policymakers and, across party lines, they express strong support for government-led solutions.

The survey results were announced today in Springfield by Lynn Quincy, Director of the Healthcare Value Hub. She was joined by State Rep. Will Guzzardi, Senator Andy Manar and advocates from Protect Our Care Illinois. The legislators also unveiled new legislation to tackle some of the issues raised in the poll, including a new state board that would review data on drug prices and set new payment limits for state-regulated plans.

“This new consumer health survey confirms what we have known for a while: people in Illinois are being crushed by the cost of health care and prescription drugs and they are looking to state government to address this huge issue. We have to do something now to provide relief to Illinois families,” said Rep. Will Guzzardi, D-Chicago who chairs the House Prescription Drug Affordability and Accessibility Committee. “When it comes to tackling drug costs, 86 percent of survey respondents endorsed the creation of Prescription Drug Affordability Board to examine the evidence and establish acceptable costs for drugs– and I’m committed to bringing that type of oversight to Illinois.”

“These findings signal the degree to which the prescription drug industry is failing to serve the health of patients, while those responsible face zero consequence,” said Senator Andy Manar, D-48. “It puts the onus on every legislator to be a part of a solution that delivers serious transparency and accountability to an industry besieged by profiteering and exploitation of working families.”

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, January 9 – January 17, 2020, resulting in a demographically balanced sample of approximately 1,047 adults 18 and older who live in Illinois. More information about methodology can be found in the report.

“Our current prescription drug pricing system is broken and, as it operates today, cannot deliver medications that all Illinoisans can afford. Prescription drugs don’t work if you can’t afford them,” said Logan Charlesworth, Protect Our Care Illinois coalition manager. “We need to allow Illinoisans to focus on getting healthy rather than allowing them to dangle on the precipice of health and financial ruin because they cannot afford their medications.”

Additional key findings include:

  • Nearly half (49 percent) of adults who needed health care in the prior 12-months encountered one or more cost-related barriers to getting the care they needed.
  • Over half (54 percent) of all survey respondents reported being either “worried” or “very worried” about affording the cost of prescription drugs. More than a quarter of respondents (28 percent) cited cost concerns as the driving factor for not filling a prescription or cutting pills in half.
  • Of the adults sampled in the survey, those who live in Greater Illinois (outside of Cook and the Collar Counties) experienced the highest healthcare affordability burden (59 percent) compared to the rest of the state.
  • Over one-third (35 percent) of Cook County adults got the care they needed but struggled to pay the resulting medical bill and 12 percent were unable to pay for necessities like food, heat, or housing.

Protect Our Care Illinois calls on the Governor and legislator leaders in the General Assembly to make health care affordability a priority during this legislative session.

To read the reports, visit:

Learn more about the Prescription Drug Affordability Board here.


About Protect Our Care Illinois

Protect Our Care Illinois is a statewide coalition of health care advocates, providers, consumers, and workers, joining together to prevent the repeal of the Affordable Care Act (ACA), prevent disastrous changes to Medicaid, and protect and expand access to quality affordable health care.

Protect Our Care Illinois Responds to Gov. Pritzker’s Annual Budget Address

Illinois Governor JB Pritzker delivered his annual Budget Address to a joint session of the General Assembly yesterday afternoon. Protect Our Care Illinois was pleased to hear the governor’s continued dedication to building a health care system that is equitable, accessible, and affordable for all Illinoisans.

We commend Governor Pritzker on:

  • His commitment to ensuring quality health care will be accessible to all Illinoisans via the revival of the Navigator program;
  • Adding 100 new employees to the Department of Human Services to reduce the Medicaid redetermination backlog;
  • Increasing the state budget for mental health and addiction treatment services by $40 million;
  • His leadership to protect hardworking families across the state via the Fair Tax amendment; and
  •  Maintaining family planning funding.

What was left out of the budget, however, shows that our state still has significant work ahead in order to achieve a truly equitable health care system for all people in Illinois. Specifically, people who are ineligible for healthcare coverage due to immigration status must be provided affordable, quality options for healthcare coverage in order to continue to move towards a more equitable healthcare system in IL for all people. In addition, by expanding Medicaid coverage to 12-months postpartum for all women, Illinois can make significant progress toward reducing maternal mortality and morbidity. 

We look forward to working with the Pritzker Administration and partners in the General Assembly to enact these budgetary priorities and continue to bring to life the vision of true health equity in Illinois.

Protect Our Care Illinois Coalition Condemns the Trump Administration’s Latest Attack on Medicaid

The Trump administration announced today a plan to allow states to change Medicaid funding to block grants — which would amount to a cut in Medicaid funding. The Protect Our Care Illinois coalition is opposed to this plan because if it were enacted here, it would drastically decrease health care access for people living in poverty who are among the most marginalized in our state. Medicaid block grants threaten healthcare access by cutting the funding of this life-saving health insurance program. Illinoisans cannot afford this attack on healthcare.

“The administration’s decision will gut access to services that keep those most in need, including people living with chronic conditions like opioid addiction and mental illness, from engaging in health care,” said Logan Charlesworth, Protect Our Care Illinois’ Coalition Manager. Medicaid covers 1 in 4 Illinoisans, and nearly one-third of Illinois’ Medicaid Expansion population is living with a mental health or substance use condition.

Additionally, all Medicaid block grant proposals and similar reforms would dramatically cut federal funding and shift costs to the states. This is an attack on people’s healthcare, and would harm Medicaid funding. Medicaid is a popular, 55-year-old program that provides health insurance to tens of millions of Americans.

The Trump administration’s Medicaid cuts would harm Illinoisans’ health, the stability of our economy, and the ability of state government to fund Medicaid and other priorities, like education and social services. Protect Our Care Illinois calls on our state elected leaders, including Governor Pritzker, to firmly and quickly denounce the Trump administration’s Medicaid Block Grants plan.

Gov. Pritzker signs SB667 to increase access to insulin

SB667 is an important first step on the path to addressing the skyrocketing prices of lifesaving medicines like insulin. The cost of popular types of insulin has tripled over the last decade, increasing the price of some by as much as 800%. SB667 will cap those costs at $100 for a 30-day supply, and require further study of prescription drug costs by the state Department of Insurance. We look forward to reviewing the Department’s findings.

The members of Protect Our Care Illinois want to thank the bill sponsors, Senator Manar and Representative Guzzardi, as well as Gov. Pritzker for his early support of the measure. 

Protect Our Care – Illinois is a statewide coalition of health care advocates, providers, consumers, and workers, joining together to prevent the repeal of the Affordable Care Act (ACA), prevent disastrous changes to Medicaid, and protect and expand access to quality affordable health care.  

Protect Our Care Illinois Denounces the Fifth Circuit Court’s Politically Motivated Decision in the Health Care Repeal Lawsuit

Protect Our Care Illinois denounces the decision of the Fifth Circuit Court of Appeals in Texas vs. US, which lays the foundation for the overturn of the Affordable Care Act (ACA) and risks the health and well-being of millions of lives. The two Republican-appointed judges sided with President Trump and Republicans to declare a portion of the law unconstitutional and sent the rest back to the same handpicked lower court judge who has already ruled the entire law unconstitutional.

Despite this ruling, health insurance purchased on the Illinois Marketplace for 2020 coverage is still valid and protections for people with pre-existing conditions are still intact, for now. 

Health care is a top priority for Illinoisans; and yesterday’s ruling represents a major blow in the fight for access to comprehensive care that meets the needs and the budgets of everyday people. Now, at least 605,000 Illinoisans are at risk of losing their health coverage. Make no mistake – this politicized decision jeopardizes the health care coverage and peace of mind for the over 5 million people in Illinois who have pre-existing conditions.

Under the ACA, twenty million individuals have gained health care coverage nationwide – bringing uninsured rates to an all-time low. Moreover, the ACA established historic consumer guarantees and meaningful coverage of core health services, including:

  • Protections for people with pre-existing conditions 
  • Ban on annual and lifetime coverage caps for people who are chronically ill
  • No discrimination against women and seniors in insurance pricing
  • Ability for parents to keep their children up to age 26 on their insurance plan 
  • Required coverage of ten essential health benefits, including: mental health and substance use treatment, contraceptive coverage, maternity care, and prescription drugs

This health care repeal lawsuit represents the latest in a string of attacks on the ACA that jeopardize access to the high-quality care provided for by the Act’s provisions. Republican members of Congress have voted to repeal the ACA more than 50 times since it was enacted in 2010. Following multiple failed attempts to repeal, the Trump Administration began allowing insurance companies to expand the sale of short-term plans that fall short of meeting the quality standards required by the ACA. Additionally, the Administration has pursued actions that weaken the program, including shortening open enrollment, scheduling website maintenance during peak hours, and slashing funds for community assisters and marketing.  

Tragically, yesterday’s decision represents a turning back of the clock on the fight to expand health coverage, access to comprehensive care, and consumer protections. In the face of ongoing sabotage, Protect our Care Illinois will remain vigilant in defending the historic progress made possible because of the ACA. We are proud to support Illinois Attorney General Kwame Raoul’s defense of the ACA, and we are committed to standing with health care consumers, providers, and advocates across Illinois in support of accessible, comprehensive health care for all Illinoisans because safe, healthy individuals and families are the heart of vibrant, prosperous communities.

Statement on the signing of SB 1321, the Medicaid Omnibus Bill

Obtaining and retaining health coverage should be easy for our neighbors who depend on it.

With the signing of SB1321 – the Medicaid Omnibus bill – we now have strong provisions directing the Department of Healthcare and Family Services to streamline and simplify the redetermination process so that fewer Illinois families will fall through the cracks.

Thank you to Governor Pritzker and his staff, Senator Steans, Leader Harris and other champions in the General Assembly for your vision and taking the steps necessary to build a health care system that works for all Illinoisans.

Our communities will be healthier and more stable as a result.

Illinois General Assembly Passes Medicaid Reforms, Safeguarding Health Coverage for Three Million Illinoisans who Depend on Medicaid

With unanimous votes in the House and Senate, advocates secure fixes to address the Illinois Medicaid eligibility and redetermination crisis

Springfield, IL— Protect Our Care Illinois (POCIL) applauds the Illinois General Assembly for successfully passing SB 1321, a Medicaid omnibus bill to improve the enrollment process and address other issues with the Medicaid system. The state has struggled for years to complete Medicaid applications in a timely fashion and prevent lapses in Medicaid coverage at renewal. We are hopeful that this bill will finally implement the reforms needed to streamline Medicaid renewal processes and better ensure our state’s three million Medicaid recipients will get the health care they need.

This legislation, sponsored by Senator Heather Steans, Majority Leader Greg Harris, and supported by stakeholders across the health care system will set into motion sweeping reforms throughout the Medicaid program. POCIL and its members Heartland Alliance, AIDS Foundation of Chicago, EverThrive Illinois, the Sargent Shriver National Center on Poverty Law, Legal Council for Health Justice, Thresholds and many others, worked tirelessly with the sponsors and other stakeholders to make sure the bill addressed the long-standing issue with redetermination cancellations and application delays. “Issues with Medicaid enrollees losing their coverage at renewal came up again and again,” said Senator Heather Steans. “We had to make it easier for eligible families to keep their benefits so they can have the peace of mind of dependable health coverage.”

The focus on Medicaid eligibility and enrollment stems from Illinois’s inability to process applications within the 45-day federal guidelines. There are currently over 100,000 overdue applications and the state is facing a lawsuit for the delays. Compounding this problem is a revolving door of Medicaid cancellations at renewal, leading to hundreds of thousands of Illinoisans losing coverage each month when many remained eligible. Over one-third of beneficiaries lose their benefits for some time at renewal.

POCIL focused on streamlining the application and renewal process by relying on electronic eligibility data and limiting the need to submit additional documentation. “Many Medicaid enrollees are struggling to make ends meet, working low-wage jobs and facing housing instability. That makes it tough to keep up with the all the letters and documentation currently required,” explained Heartland Alliance policy staff Dan Rabbitt. “We need to make the process for obtaining and retaining health coverage simple and easy for our neighbors who depend on it and this bill does just that.”

POCIL remains committed to strengthening Illinois’ Medicaid program and looks forward to continuing to partner with the Pritzker Administration, General Assembly, and other stakeholders to ensure Illinoisans can depend on the continuity of coverage and care necessary to stay healthy.

We look forward to a successful implementation of the bill and to building a strong health care system for all Illinoisans.

Protect Our Care Illinois Calls on the General Assembly to Protect Illinoisans From Looming Federal Health Care Attacks

The Trump Administration just unveiled its long-expected proposal to reverse health care protections for women, LGBTQ+ people and non-English speakers who are seeking care – issuing a draft rule that seeks to undo key parts of Section 1557 of the Affordable Care Act (ACA). Section 1557 is the nondiscrimination provision of the ACA – also known as the Health Care Rights Law – which prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in any health program or activity any part of which received funding from HHS. This includes the Federal Health Insurance Marketplace and insurers that operate within the Marketplace.

The Trump proposed rule makes changes to non-discrimination protections in healthcare, significantly cutting back protections for women, LGBTQ+ people and people with limited English proficiency. It takes away express prohibition of discrimination based on gender identity and allows health insurers to discriminate in programs not directly receiving federal financial assistance.

“Protect our Care Illinois strongly opposes the Trump Administration’s insidious move to sanction discrimination and to further disenfranchise non-English speakers in our healthcare system,” says Protect Our Care Illinois Campaign Manager, Graciela Guzman.

This morning’s announcement is just one of the most recent myriad efforts to undermine access to healthcare and protections via the ACA and is a clear example of why we must call on our state officials to protect healthcare for Illinoisans.

We call on the General Assembly to protect Illinoisans from damaging and looming attacks on our healthcare through two steps that can be completed before the end of this legislative season on May 30th:

1. Support HB471 – the Freedom from Aggressive Insurance Increases Review (FAIIR) Act

Ensuring the Department of Insurance has the power to reject unreasonable and discriminatory rates is crucial to do right now. The relentless attacks on healthcare from the Trump Administration have not stopped and will only continue, leaving state officials in a position to try to fix problems for consumers long after the fact. This latest attack is one of the problems we do not want to be chasing. Illinoisans need protection, predictability, and stability when it comes to their healthcare.

Passing HB 471 is urgent and must be a priority for the General Assembly where the bill has successfully passed the House but has remained stuck in the Senate Insurance Committee. We call on our General Assembly members in the Senate to VOTE YES ON HB 471. 

2. Support SR 264 – the Protect ACA Resolution

On July 9th, a federal appeals court will hear the Trump-backed Texas vs. Azar case, which seeks to find the the entirety of the ACA unconstitutional. If this ruling is upheld, it would threaten the health and insurance coverage for over five million individuals in Illinois with pre-existing conditions, over two million people enrolled in Medicare, and 3.2 million people enrolled in Medicaid. In addition, this potential ruling would cause consumer protections to vanish overnight and would unleash chaos in our healthcare system.

We call on our General Assembly members in the Senate to affirm and protect the healthcare of Illinoisans and support SR 264 – the Protect ACA Resolution. 

Enrollment in ACA Marketplace Drops Due to Trump Administration Sabotage

On Wednesday, CMS released the near final weekly snapshot of enrollment numbers for the 39 states, including Illinois. This figure shows 8.5 million people enrolled in coverage during the latest six-week open enrollment period, a drop of 368,000 Americans. Illinois enrolled 314,777 individuals, a 7% drop in enrollees, and will have about 25,000 fewer Illinoisans covered this year through the Marketplace.

While the decrease is much smaller than what we feared, the data is still troubling: the number of new enrollees decreased significantly, indicating that those who rely more on proactive outreach and advertising to educate them about the Marketplace did not receive it this year. The Trump Administration could have chosen to bolster coverage for Americans by robustly supporting advertising, outreach and enrollment to properly reach and educate consumers. Instead, the Administration cut advertising by 90% and cut local help via Navigators by more than 80%. In a recent Kaiser Family Foundation poll, only one in four who buy their own insurance or are uninsured knew about the December 15th deadline. This is a clear sign that new consumers, most likely young adults, did not know about the open enrollment period due to the administration’s cuts in outreach and enrollment.

In addition to this lack of support for outreach and enrollment, the wide confusion caused by efforts from the administration and congressional Republicans to undermine and sabotage the Affordable Care Act (ACA) also bear an impact including the zero-ing out of the individual mandate penalty, the proliferation of short-term limited duration health insurance plans, and the fear instilled in the immigrant community about the public charge issue. The latest attack – the U.S. district court ruling on Texas vs. Azar- was released on the eve of the end of open enrollment for the majority of states in the US, including Illinois. The Supreme Court has upheld the ACA twice and this lower court decision doesn’t change that — yet it is another partisan attempt that fails to improve the health care system or lower costs for anyone.

Despite counterproductive actions by the Trump Administration, families from across the nation signed up for coverage. “The recent Marketplace enrollment numbers show that over 300,000 people in Illinois want and are seeking out affordable, comprehensive health insurance despite all of the congressional and administrative efforts to kill the ACA,” said Stephani Becker, Protect Our Care Illinois Steering Committee member and Associate Director of Healthcare Justice for the Sargent Shriver National Center on Poverty Law. As the November midterm election results showed, Americans are not willing to return to a time where income or pre-existing conditions might be a death sentence, especially in light of nonstop politically motivated attacks from the administration.

We are hopeful that under a new Governor in Illinois we can work on strengthening the Illinois Marketplace and focus on instituting state-based consumer protections so that we can reverse the trend of decreasing enrollment caused by the Trump administration’s efforts to sabotage the ACA.

Court Ruling Striking Down the Affordable Care Act is Misguided and Cruel – But Doesn’t Change Open Enrollment 2019

US District Court Judge Reed O’Connor made a decision on Friday to strike down the entirety of the Affordable Care Act (ACA) in the case Texas v. United States. This lawsuit threatens access to healthcare, quality of coverage, and financial protections for millions of people and their families.

This ruling is an assault on 133 million Americans with preexisting conditions, on the 20 million Americans who rely on the ACA for healthcare, and on America’s faithful progress toward affordable healthcare for all Americans. The ACA has already survived more than 70 unsuccessful repeal attempts and withstood scrutiny in the Supreme Court. During the midterm elections, the American people forcefully rejected efforts to repeal and undermine the Affordable Care Act. Yet, the Trump Administration has made it clear that their priority is attacking access to critically-needed health care, protections for people with pre-existing conditions, and insurance for young people. Now, conservative courts are cowardly following suit.

While Protect Our Care Illinois is deeply disappointed in yesterday’s cruel and poorly reasoned decision by a judge in Texas, we want to share a few important points about its real impact:

  1. The ACA is still the law of land. Medicaid expansion, protections for people with pre-existing conditions, and the Health Insurance Marketplace remain intact. 
  2. This ruling does not take effect immediately and is being appealed. This is a lower court decision and national and state advocates are ready to appeal. 
  3. This decision does not impact the open enrollment period happening right now. As the Centers for Medicare and Medicaid Services stated today “the recent federal court decision is still moving through the courts, and the exchanges are still open for business and we will continue with open enrollment. There is no impact to current coverage or coverage in a 2019 plan.”

This means that your healthcare coverage and financial protections are not currently affected. So, you should continue to see your doctor when you need to. Those who haven’t done so already can enroll in a marketplace health plan today, December 15th, the last day of open enrollment.

Friday’s misguided ruling will not deter us: we will continue to fight in court for the health and well-being of Illinoisans and all Americans. Protect Our Care Illinois urges Texas and the coalition of challengers to work to reduce the number of uninsured families across our country instead of playing politics and trying to dismantle existing funding that makes coverage affordable and overturning critical consumer protections.

From the start, legal experts, across the political spectrum have questioned the merits of this case, and we firmly believe the appeals court will agree and reverse this decision based on weak legal arguments and the devastating impact it will have on the 20 million Americans benefiting from the ACA, including those in Illinois. We encourage you to resist this latest sabotage attempt and enroll in a comprehensive ACA insurance plan today.