I spent the last few weeks of March counting down the days I had left to get health care coverage. A change in income meant I would soon be ineligible for my state’s low-income Medicaid program, something I didn’t have to worry about losing for the previous three years because of pandemic-era continuous-enrollment policies.
Unfortunately, many people are at similar risk of losing their state health insurance. Starting in April 2023, the end of continuous enrollment meant states began terminating people from Medicaid. Continuous enrollment was a policy implemented between March 2020 and March 2023 as a result of the COVID-19 pandemic. It required states to continue medical coverage regardless of changes in a person’s income or life circumstances. This meant that no Medicaid beneficiary could be disenrolled except by choice or change of state residency.
By June 1, 2024, states were supposed to have completed the process of “unwinding” people from Medicaid. However, that deadline was recently extended to June 30, 2025, due to operational challenges with the unwinding process. The term “unwinding” describes the process of mass disenrollment that has occurred since April 2023, leading to a surge in uninsured people. As of April 2024, in my state of Wisconsin alone, 355,516 people have been terminated from Medicaid, with about 63 percent of those terminations being for procedural reasons such as incomplete or unreturned renewal paperwork. However, this disenrollment data is not easily accessible, nor does it always differentiate between who was terminated for procedural reasons versus increased income.
Disability discrimination is also an issue in disenrollment, as identified by the legal advocacy group Disability Rights DC, which noticed that Medicaid-eligible individuals were being unjustly terminated through unnecessary administrative burdens. Additionally, published state enrollment data often does not identify demographic information like age, race, and income. This lack of transparency makes it hard for health care navigation agencies to know who to advertise health care coverage options to within the federal health insurance marketplace.
As a result, patients like me with multiple chronic illnesses are abandoned on the edge of benefits cliffs, facing either the risk of losing access to life-sustaining health care due to cost or financial precarity if we continue to seek health care despite the cost. I am no stranger to this.
During those last few weeks of March, after the state sent me a notice that my health care coverage would be terminated at the end of the month, I came down with a viral illness. On my twenty-fifth birthday, I woke up with ear pain that progressed into chest pain and a dry cough. My chronic illness symptoms increased, and soon I was unable to get around the house or out of bed.
A week before my insurance ended, my symptoms escalated to the point that I collapsed in the stairwell of my apartment building, leading to an emergency room admission. A day later, my heart rate shot up to 170 beats per minute when a simple blood test required me to stop taking my $600 a month cardiac medication. As a result, I scoured the health insurance marketplace for a plan that would continue to cover my medication but discovered that it fell under none of the covered prescription drug lists.
Those last few days of health care coverage confirmed my greatest fear: Without adequate health insurance like Medicaid, I’d end up either in a health crisis or financially devastated by the cost of my care. In just five days, I was billed more than $6,000. Yet Medicaid, my lifeline for the past six years, had covered it all.
Without Medicaid, patients like me are left to make drastic health care decisions. Doctors are often quick to label those decisions, such as stopping medications, avoiding regularly scheduled treatments, or abandoning diet or lifestyle recommendations, as “noncompliance.” However, perceived noncompliance is typically the result of structural barriers. As my heart medication dwindled down to my last few pills, profound advocacy fatigue made me consider not calling my doctor’s office to let them know they would need to submit a prior authorization to my new marketplace insurance plan.
Fortunately, I am literate enough in health care to know how to fight health insurance companies in order to obtain the traditionally uncovered services that I need. However, many patients are not so well-resourced, and insurance companies rarely oblige patient needs. Too often, doctors, pharmacies, and prior authorization departments leave advocacy for critical medications or services in the hands of the patient.
Therefore, as an estimated seventeen million people get cut from Medicaid, many patients may abruptly become unable to access regular chronic disease treatments and will see their conditions worsen. A number of Medicaid patients have already testified to this happening, noting the devastating toll of losing access to life-saving prescriptions.
The solutions to this are multipronged. The obvious one is for the government to treat health care as a human right and subsidize health care for all. However, the smaller steps toward this goal include fighting for Medicaid expansion in all states in order to allow more low-income people to remain Medicaid-eligible in the face of disenrollment. Other solutions include health care systems increasing access to their financial assistance programs or creating them if they do not already exist. Financial assistance programs should also cover prescription drug costs if prescriptions are filled at pharmacies linked to hospital or clinic systems.
Finally, critical to geographically isolated patients, Medicaid can offer transportation benefits to get people to and from medical appointments that many marketplace plans do not. To preserve the physical connection to health care services, hospital systems should provide free ride services to patients who are unable to drive or afford transportation.
My six years on Medicaid were both terrifying and beautiful. Terrifying, in that I was always afraid of losing it, but beautiful in the sense that I never had to worry about the financial toll of preserving my life. The beautiful part of Medicaid is the kind of peace of mind that all patients deserve.
Ultimately, physicians need to be aware of the access issues that patients are currently facing as a result of disenrollment and offer compassion to patients who may make choices to forgo care as a result of insurance loss. In the immediate term, health care systems can buffer the effects of Medicaid unwinding by increasing the scope of financial assistance policies and medical transportation programs. In the long term, health care providers can work alongside patient advocates to lobby for federal changes that preserve Medicaid rather than seek to dismantle it.