Illinois Had Massive Gaps in Mental Health Coverage. We Organized to Fix It.

Access to mental health care is rapidly expanding in Illinois, thanks to a legislative victory won through a grassroots campaign that united patients and health care providers to take on the power of the health insurance industry. As organizers who worked on the campaign, we’re excited to share the story of our win with the hope that it will give momentum and inspiration to similar campaigns in other states.

Our recent victory came on December 12, 2025, when Illinois Gov. JB Pritzker signed House Bill 1085 into law, expanding access to mental health care for about 2.5 million people in our state. This bill requires private insurers to pay mental health and substance abuse treatment providers fairly, and more in line with physical health care, so they can afford to accept private insurance, with the goal of ending ghost networks (lists of providers that are not actually available to take patients) and increasing the number of therapists working in Illinois. The win was a result of three years of grassroots organizing by people who have faced barriers to accessing mental health care and therapists who have been exploited by insurance companies.

Our organization, The People’s Lobby, decided to work on this campaign because a significant proportion of our members have faced huge problems in accessing quality health care as a result of profiteering by health insurance corporations. Starting in 2023, we joined the People’s Action’s “Care Over Cost” campaign to connect with other groups across the country organizing for health care justice. After a year of listening to our members, educating our leaders about the barriers to getting quality care, and strategic conversations with state legislators, we decided to join mental health advocates in working to pass HB 1085 as our first campaign to limit the power of health insurance companies and guarantee higher-quality and more affordable care to patients.

Organizing the people who provide care and who need care to tell their stories is essential in creating a sense of urgency in the face of opposition from health insurance corporations.

In the process we learned a few key lessons about what it takes to expand access to health care. First, having credible and hardworking legislative sponsors matters a lot. Second, organizing the people who provide care and who need care to tell their stories is essential in creating a sense of urgency in the face of opposition from health insurance corporations. Third, showing up relentlessly in our state capitol and in local communities helps ensure health care reform remains a priority in the face of other major crises state legislatures may need to address. Lastly, and maybe most importantly, a significant portion of private insurance (about 40 percent in Illinois) is regulated at the state level, and so in states where Democrats hold power, they can, if they choose, make reforms that meaningfully expand access and quality of care.

Health care policy is complicated and the details matter. Lead sponsor Illinois State Rep. Lindsey LaPointe holds a Master of Social Work (MSW), worked for a number of years as a social worker and human service provider, and deeply understands the barriers to care. The legislative sponsors worked with behavioral health policy experts like Heather O’Donnell, formerly of Thresholds, who crafted the language and amendments, relying on data from both Milliman and the Research Triangle Institute which enumerated the disparities in pay between providers of physical and mental health care. State Sen. Karina Villa, the original and long-time senate sponsor of the bill, also holds an MSW and worked as a school social worker prior to becoming a state legislator. Both sponsors met regularly with O’Donnell, The People’s Lobby, and other allies to coordinate messaging and lobbying strategies.

The stories of therapists were critical in persuading legislators to act in spite of the opposition from insurance corporations. Legislators were often startled to hear that many of them hadn’t received a real raise in a decade, forcing them to stop accepting insurance, take on an unsustainable number of patients leading to burnout, or leave the profession altogether. Furthermore, for many years, insurance corporations required therapists to sign non-disclosure agreements (NDAs), meaning they could not tell anyone how much they are paid or bargain together for livable wages. One therapist, who asked to remain anonymous so as not to violate her NDA, said, “I have been in private practice for 15 years. Over the course of that time, we have seen no significant increases and often decreases in our annual rate change that is set by the insurance companies and for which providers have zero power to negotiate.”

It was equally important that patients played a leadership role in this campaign and frequently told legislators their stories of the barriers to accessing mental health care. These barriers often resulted in people being forced to pay out of pocket, to delay care while searching “ghost networks,” or to simply go without care.

Alysson Light, associate instructional professor at the University of Chicago and a leader with The People’s Lobby, struggled to find a therapist for depression related to providing care for her husband following his organ transplant in 2020. In the winter of 2023, she described herself as exhausted and emotionally numb, unable to balance her own wants and needs against the care her husband needed. Light searched her list of in-network providers, but found many were no longer in the network or did not provide services she needed, what advocates call “ghost networks.” Her husband, who happens to work as a therapist, helped her comb through the list. After three months they found just one practice in Chicago that was equipped to provide care and accepted her insurance. In a further testament to the need for HB 1085, Light’s spouse continues to provide therapy to patients in Pennsylvania, where they lived before they moved to Chicago, rather than take the financial hit of practicing in Illinois.

To build the team of therapists and patients willing and able to share their stories and lead this campaign, we held seven town halls throughout Chicago and its suburbs. People showed up because they received personal invitations from The People’s Lobby’s members, or because they heard about the town halls through therapist listservs, emails from The People’s Lobby or allied elected officials, or social media. We began these town halls with a bit of education about why people were not able to access mental health services that insurance corporations say they cover, then we broke into small groups to hear from patients and therapists about their struggles to get or provide care. Elected officials were often present to hear their stories.

We also invited people who attended to tell their stories to legislators in other ways. Despite the Illinois state capitol being three hours away from the closest part of the Chicago metro area, therapists and patients made the trip seven times during the last year of the campaign. We organized another 20 visits with legislators in their districts and sent more than 7,000 letters to legislators during the final year of the campaign. This level of activity helped us work closely with Senate President Don Harmon to keep this issue alive during a time when the state legislature was addressing a state budget crisis and working on a bill to save regional public transportation from a $750 million fiscal cliff.

It’s also important to note that HB 1085 builds on other recent Illinois health care reforms. Rate review, which takes full effect in 2026, will require insurance corporations to justify rate increases to the Illinois Department of Insurance (DOI). In lobbying against HB 1085, insurance lobbyists claimed they would have to raise premiums in order to increase provider pay, and rate review will give the DOI some ability to assess the veracity of this claim. The Healthcare Protection Act, which passed in 2024, bans high-deductible and low-coverage insurance (known to advocates as “junk insurance”), ends the practice of requiring patients to try less-effective medicine and fail before covering medicine prescribed by their doctors, and requires insurance corporations to pay for proven standards of care rather than allowing them to define their own, among other provisions.

When organizers and elected officials work together to expand access to care and control costs, we build momentum toward Medicare for All.

Even on the heels of resounding defeats in Washington, D.C., Democrats can make real improvements to health care access and then campaign on those improvements in states where they hold power. Almost anyone who has been sick or helped a loved one navigate the health care system has firsthand experience with the ways health insurance corporations consistently delay and deny care. This anger is widely and deeply felt, and people will feel substantive reforms quickly. When organizers and elected officials work together to expand access to care and control costs, we build momentum toward Medicare for All, and convince other elected officials that taking on the power of health insurance corporations is both good policy and good politics.

The story of how grassroots organizers fought to pass this bill is particularly important in this moment, when as many as 17 million Americans will lose health care due to Medicaid work requirements and cuts to Affordable Care Act subsidies that help people pay for insurance on the marketplace.

To justify allowing these subsidies to lapse, President Donald Trump has cynically adopted one critique from the left, complaining about “money sucking insurance companies.” It’s true that insurance corporations maximize profits by taking our premiums and routinely denying necessary and lifesaving care, but in the absence of Medicare for All, the solution is regulating private insurance corporations, not abandoning people to whatever predatory plans or rates insurance corporations are willing to offer. In order for people in the U.S. to get the dignified health care they deserve, we need to do so much more than give insurance corporations more money.

Expanding access to corporate insurance doesn’t get at the root of the problem. We have to get creative about other policies that improve access and affordability — and if we organize, it’s very much within our power to win.