By Kathy Missel, Streator, Illinois
I live in Streator, Illinois, a small rural community where finding a specialist means a long drive and a longer wait. I have multiple myeloma, a rare and incurable blood cancer. The drugs keeping me alive can cost tens of thousands of dollars a year. Like many rural patients, I've spent years fighting not only my disease, but also a healthcare system that too often leaves people like us behind.
That's why what's happening in Springfield worries me deeply.
The 340B prescription drug program was created in 1992 to help federally qualified health centers and safety-net hospitals buy drugs at steep discounts and use those savings to help uninsured and underinsured patients. It was built on good intentions. But Congress failed to require transparency or accountability for how those savings are actually used. There are no meaningful rules requiring hospitals to pass savings directly to patients. No consistent reporting. No guarantees that vulnerable communities benefit.
Since the Affordable Care Act expanded eligibility, the program has exploded — growing from $6.6 billion in discounted drug purchases in 2010 to $81.4 billion in 2024. Today, it includes thousands of hospitals, satellite facilities, and for-profit contract pharmacies, many located far from the communities the program was designed to serve.
In Illinois, the numbers raise serious questions. Illinois 340B hospitals now generate roughly 2.7 times more in program profits than they spend on charity care. Statewide, these hospitals provide charity care equal to just 1.74% of their costs — below the national average — and nearly 69% provide less charity care than comparable non-340B hospitals. One Illinois hospital alone, the University of Chicago Medical Center, is estimated to generate more than $200 million annually through the program.
Where is that money going?
Some of it is flowing far beyond Illinois. Hospitals in this state maintain thousands of contract pharmacy agreements stretching to places like Palm Beach, Hawaii, California, and Washington. Meanwhile, rural Illinois patients are still driving hours for care. There are documented cases in which hospitals purchased cancer drugs through 340B at heavily discounted prices and then billed insurers at dramatically higher rates — generating enormous profits with no requirement that the money be reinvested into patient care.
Hospitals insist those savings support broader operations and community benefit programs. But patients are largely asked to take that on faith, because there is little public reporting to prove where the money actually goes. Trust is not a policy. Trust does not pay for chemotherapy.
Research also suggests that 340B hospitals often charge higher prices for outpatient care and have incentives to prescribe more expensive medications — increasing costs for employers, insurers, and families through higher premiums and healthcare spending.
Now Illinois lawmakers are considering House Bill 2371, called the Illinois Patient Access to Pharmacy Protection Act. Supporters say the bill protects patient access by preventing pharmaceutical manufacturers from limiting how hospitals use contract pharmacies within the 340B program.
But protections for whom?
HB 2371 does not require that a single dollar of 340B savings directly reach Illinois patients. It does not mandate detailed reporting on how hospitals use program revenue. It does not prioritize rural or underserved communities. Instead, it would reinforce a system that already allows hospitals to generate substantial profits with minimal accountability.
I want the 340B program to succeed. I want cancer patients, diabetics, working families, and parents of sick children in rural Illinois to receive the help this program was meant to provide. But good intentions without oversight create opportunities for exploitation.
Other states are beginning to recognize this. Minnesota recently started requiring hospitals to report how much they make through 340B. The results were eye-opening: participating hospitals generated $1.3 billion from the program in 2024 alone. Yet even there, it remains unclear how much actually reached patients in need.
Illinois should go further. Before expanding protections through HB 2371, lawmakers should require hospitals to publicly report how much they earn from 340B, and exactly how those dollars are spent helping patients. Legislators should prioritize transparency, rural healthcare access, and accountability over preserving a system that too often operates in the dark.
Congress created this problem by writing good intentions into law without meaningful oversight. Federal reform is overdue. But Illinois lawmakers do not have to wait for Washington to act. They can demand accountability now.
As a cancer patient, I know hope matters. But hope without accountability is not enough. Patients like me deserve more than promises. We deserve to know that the savings intended to help us are actually reaching us.
Kathy Missel is a rural Illinois patient living with multiple myeloma. She lives in Streator, Illinois and in a the Illinois state deputy for the Patients Rising Patient Senate representing IL-26.