The numbers are in, and they tell a devastating story: tens of thousands of Illinoisans have lost their health insurance because it simply became too expensive, according to the Illinois Health Benefits Exchange Advisory Committee (HBEAC).

Since open enrollment ended, more than 90,000 people have unenrolled from marketplace coverage. Nearly two-thirds lost coverage because they could no longer keep up with their monthly premiums. Among those who chose to leave their plans, more than three-quarters said affordability was the reason. 

This didn’t happen by accident. It happened because Donald Trump and Congressional Republicans chose not to act when they had the chance to protect affordable coverage for working families. They allowed enhanced premium tax credits to expire, fully aware that premiums would spike and that people would be forced to make impossible choices between paying for health insurance and paying for groceries, rent, or childcare.

For months, advocates, health care providers, and state leaders warned of this exact outcome. Disenrollment is two to three times higher than anything Illinois has experienced in recent years, and lower-income families—those least able to absorb higher costs—have been hit the hardest.

While Illinois worked to help residents navigate these changes and keep coverage where possible, there is only so much a state can do when federal leaders walk away from their responsibility. The affordability crisis plaguing health care, and especially marketplace consumers, today is a direct result of decisions made in Washington.

Every one of these coverage losses represents a person who may now delay seeing a doctor, skip medications, or face medical debt because health care became unaffordable. Trump and Congressional Republicans own this outcome. Illinois families are paying the price for their failure to act.

On June 1st, 2026, the Center for Medicare and Medicaid Services (CMS) issued an Interim Final Rule, providing guidance to states to implement Medicaid work requirements, which will go into effect in Illinois on January 1, 2027.  

Contradicting its previous communication to states and, in some instances the statutory language of H.R.1, the CMS rule appears very restrictive and likely to pose such burdens to patients, providers, and states that eligible individuals, including those with serious medical conditions, will inevitably lose their Medicaid coverage during the maze-like implementation.  

The most significant guidance in the rule appears to indicate that adults who are considered “medically frail” i.e. have cancer, HIV, kidney disease, etc., or their physicians will eventually need to provide documentation to prove that they are sufficiently ill that they are not able to comply with the work reporting requirements; self-attestation and/or a diagnosis alone from a medical provider may not be sufficient.  

Additionally, while caretakers for minor children and disabled adults can qualify for work reporting exemptions, even if they are not related to or reside with the individual they are caretaking for, CMS issued no guidance to states for how individuals can document that they qualify.  

Medical and social service providers already overburdened with paperwork may need to individually review patient cases to determine whether they meet a threshold of medical frailty in order to be exempt from work reporting requirements.   

As we expressed to CMS before the release of the rule, states are not equipped to implement this level of complexity on such a short timescale. States began implementation planning in communication with CMS since H.R.1 was signed into law on July 4, 2025, and unless granted an extension, there is now less than 6 months to implement this new, contradictory guidance which will require significant overhauls to state systems and processes.  

The Protect Our Care Illinois (POCIL) Coalition is concerned that many individuals will unnecessarily lose coverage due to the lack of awareness of exemptions from work reporting requirements or due to burdensome documentation requirements. Studies have shown that work requirements do not lead to an increase in employment, and that the vast majority of individuals receiving Medicaid are already working full or part-time, studying, caretaking, disabled, or are retired.   

As a coalition of nearly 100 organizations representing Medicaid recipients, medical and social service providers, advocates, and community members, we commit to working with IL’s Medicaid agency, Department of Healthcare and Family Services (HFS), to mitigate the harms of implementation of H.R.1 in Illinois and ensure that as many of our community members as possible maintain their Medicaid coverage. 

Protect Our Care – Illinois is a statewide coalition of health care advocates, providers, and consumers joining together to protect and defend Medicaid and the Affordable Care Act. Protect Our Care – Illinois invites you to join Illinoisans across the state to defend access to quality affordable health care for all.

In February, Governor Pritzker presented his budget proposal to the General Assembly; in response, we urged the General Assembly to take action. As the regular legislative session concludes, we are tasked with looking back at our call to action, reviewing our ask alongside the steps taken by the General Assembly:

1. Protect Medicaid eligibility and access to care by minimizing the harm of new barriers such as work requirements, coverage restrictions, and administrative burdens that would push people off coverage.
   1. We are disappointed that the General Assembly did not include funding to legally present immigrants who will lose Medicaid coverage on October 1st as a result of HR 1 cuts. We are thankful that some existing immigrant health programs, Asylum Applicants and Torture Victims (AATV) and Health Benefits for Individual Seniors (HBIS), received level funding, and we hope that this funding will help some of the individuals losing Medicaid.
2. Fill federal funding gaps with sustainable state revenue, ensuring Illinois does not pass federal cuts on to families, providers, and communities.
   1. We commend the General Assembly for including a revenue package that provides additional revenue, including a digital ad tax, decoupling from HR 1 tax cuts, and predictive market taxation. 
   2. We are disappointed that, though the General Assembly took steps to secure new revenue, the state continues to fall short and must find the tenacity to be bold and find a path to generate significant revenue. Fighting the federal government’s attacks includes ensuring that every Illinoisan has access to healthcare. Without additional revenue, the state cannot ensure every Illinoisan has safe, affordable healthcare. 
3. Stabilize hospitals, community health centers, long-term care providers, and the health care workforce, particularly in rural areas and underserved communities that are already under strain.
   1. We appreciate the Illinois General Assembly’s restoring the $9 million appropriation for free and charitable clinics in the FY27 State Budget zeroed out in the Governor’s budget proposal. We know that with federal changes to Medicaid, we will see additional individuals and families visiting our free and charitable clinics; they are trusted pillars of their communities, delivering care with dignity to the people who need it most.
4. Protect coverage for immigrants and mixed-status families, ensuring that all Illinois residents can access affordable, preventive, and lifesaving care.
   1. We commend the General Assembly for their:
      1. Reversal of the Governor’s Proposed Cuts to Victims of Torture, Trafficking, and Other Serious Crimes (VTTC) program, ensuring people who are ineligible for federal programs have access to food and cash assistance. 
      2. Including $143 million for Health Benefits for Individual Seniors, a healthcare program for undocumented seniors. 
5. Preserve and strengthen safety-net programs, including behavioral health, maternal and child health, HIV treatment and prevention, and long-term care services, that are essential to public health and economic stability.
   1. We commend the General Assembly:
      1. For the passage of the 340B Drug Discount Program, a needed lifeline for consumers, hospitals, and health care centers. Providing people with access to affordable prescription drugs. 
      2. Including language in the Medicaid Omnibus bill that allows IDHS to establish pilot programs through which financial support can be provided to Illinois residents by local governments, nonprofits, or privately funded programs, such as direct cash transfers to pregnant people and new parents
   2. We are disappointed that: 
      1. While the final state budget includes a slight increase to the HIV Lump Sum, it doesn’t fully reflect the additional investments necessary to address the urgent need for sustained HIV prevention, treatment, and supportive services.
      2. Despite deep racial disparities in infant mortality and maternal mortality and morbidity, the General Assembly cut funding for programs that would address root causes of inequality, prevent future deaths, and support mothers and babies. 

Protect Our Care-Illinois members will continue to advocate at the state and federal levels to ensure every Illinoisan has access to affordable, quality healthcare. We ask that our elected officials join us in this advocacy. 

Protect Our Care Illinois sent a letter to Mehmet Oz, Administrator for the Centers for Medicare & Medicaid Services (CMS) sharing our concerns about rumored changes to the forthcoming Medicaid work requirement Interim Final Rule required under H.R. 1. Specifically, POCIL is concerned about rumored changes to the definition of medical frailty and limitations on states’ ability to rely on self-attestation that would conflict with the statute.

POCIL is also concerned about the belatedness of these changes, after states like Illinois have already engaged in months of work to meet the harsh H.R 1 timelines. The rumored changes would add unnecessary burdens to providers and beneficiaries, and increase coverage losses among eligible people, including people with serious health conditions.

Read the letter here. 

Protect Our Care Illinois submitted a letter to Illinois Medicaid leaders this week, as part of a national campaign to urge the federal Centers for Medicare and Medicaid Services (CMS) to grapple with how difficult it is for states to meet the drastic timelines that H.R. 1 demands. While recognizing the extensive efforts already underway in Illinois, the coalition raised serious concerns that the unrealistic federal timelines and delayed federal guidance risk disruptions in care in Illinois. The letter makes the case that H.R. 1’s plain language authorizes CMS to grant Illinois a good faith extension on implementation, should an extension become necessary. The coalition pledged to support Illinois on the tough road ahead, and thanked the state for prioritizing accuracy, equity, and transparency as we move forward. Read the letter here. 

Today’s budget address confirms that Governor Pritzker has avoided major cuts to core health care programs — an important and necessary step to protect Illinois families, seniors, people with disabilities, and children. 

But any cuts, no matter how small, or maintaining the status quo is not enough. The Governor’s proposal fails to include a clear, proactive plan to address the serious and growing gaps being created by H.R. 1 and other federal attacks on health care. Without swift and decisive action, Illinois will still face devastating consequences, including loss of coverage, higher costs for families, destabilized hospitals and community clinics, worsening workforce shortages, and deepening health inequities.

This crisis presents Illinois with an imperative to meet this moment. We cannot merely defend what we have, we must adapt and strengthen our system for the future. It is time to put our best and bravest ideas on the table, including non-regressive revenue generation.

Protect Our Care Illinois calls on the General Assembly to advance a budget that meets this moment and guarantees a healthy future for all Illinoisans. Specifically, we demand that legislators:

1. Protect Medicaid eligibility and access to care by minimizing the harm of new barriers such as work requirements, coverage restrictions, and administrative burdens that would push people off coverage.

2. Fill federal funding gaps with sustainable state revenue, ensuring Illinois does not pass federal cuts on to families, providers, and communities.

3. Stabilize hospitals, community health centers, long-term care providers, and the health care workforce, particularly in rural areas and underserved communities that are already under strain.

4. Protect coverage for immigrants and mixed-status families, ensuring that all Illinois residents can access affordable, preventive, and lifesaving care.

5. Preserve and strengthen safety-net programs, including behavioral health, maternal and child health, HIV treatment and prevention, and long-term care services, that are essential to public health and economic stability.

Illinois has long led the nation by investing in health care as a foundation for strong families, thriving communities, and a resilient economy. This moment demands that same leadership. Protecting core programs is essential, but it is only the starting point. Illinois must act boldly to shield residents from federal harm and ensure that everyone can access affordable, high-quality care.

Springfield, IL — Today, Protect Our Care Illinois (POCIL) sent a letter to the Governor’s Office urging state leaders to act during the upcoming legislative session to protect healthcare coverage for Illinoisans and mitigate the severe harms of federal cuts included in H.R. 1.

H.R. 1 represents a sweeping attack on the very foundation of Medicaid and SNAP, breaking the federal promise of care and coverage for the most vulnerable people in our communities. These devastating cuts are being used to finance tax breaks for the ultra-wealthy and to support unlawful and dangerous immigration tactics—choices that are already harming families and communities across Illinois and the nation.

Illinois cannot easily replace the billions of dollars in lost federal funding with state dollars alone. That reality makes it even more critical for state leaders to put bold solutions on the table. Protect Our Care Illinois is calling on the Governor and General Assembly to pursue fair, non-regressive revenue options to protect healthcare coverage and invest in health-related social needs.

By prioritizing funding for these essential services and raising revenue fairly, Illinois can ensure that communities continue to support one another—and that H.R. 1 is not used as a justification for harmful cuts at the state level.

Protect Our Care Illinois urges the Governor to release a budget that prioritizes the health and safety of all Illinoisans, and calls on the General Assembly to deliver the revenue needed to keep these promises.

POC-IL recently sent a letter to Governor Pritzker and other senior members of the administration, requesting that as the State of Illinois implements the budget reconciliation act of 2025 (H.R. 1), stakeholder engagement is made a priority. While we know the State is working diligently to prioritize the health and wellbeing of all Illinoisans in implementing H.R. 1, we request regular standing meetings that are open to the public that allow for in-depth learning, discussion, and feedback.

You can read the letter we sent here: POCIL Letter re HR1 12.15.25

Most Illinoisans in the Supplemental Nutrition Assistance Program will need to meet work requirements by December to keep their benefits, advocates told lawmakers Wednesday night.

Leslie Cully, the director of the Department of Human Services’ Division of Family and Community Services, told members of the Appropriations-Health and Human Services Committee that Illinois has not been subject to work requirements for decades due to a statewide waiver based on its unemployment rate.

But the federal tax and spending bill signed in July changed the metric where states could apply for the waiver, and Cully said no county in Illinois will qualify under the new rule.

Read the full article here: https://healthnewsillinois.com/2025/10/16/officials-say-work-requirements-to-begin-for-illinois-snap-recipients-in-december/

Kathy Waligora of Protect Our Care Illinois joined a town hall with Congressman Krisnamoorthi to answer questions about health care, especially related to the One Big Beautiful Bill Act and the need to extend the ACA’s health care tax credits.

Watch the town hall here: https://www.youtube.com/watch?v=Tp3cg70Yobc