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When Alabama’s coverage gap hit home for my family


This story originally appeared on AL.com.

Our borders have become irregular as COVID-19 closes in on almost every part of our lives. The pandemic has made all of us realize how the shapes of our families are becoming irreparably different.

This summer, the shape of my own life changed.

Cathy Parker was one of my mom’s lifelong best friends. They grew up together near the border of Blount, Jefferson and Walker counties, in a small community appropriately called Corner.

Cathy Parker (right) and her husband, Chuck. (Photo courtesy of Chuck Parker)

Cathy was small in stature but had a raspy, larger-than-life voice. She also had a kind, wide-open laugh that made you feel special and heard. She was a rescuer: of plants, animals and even children.

After retirement, my parents began to spend more time with Cathy and her husband, Chuck. Early in the pandemic, they were part of a tiny pod of people with whom my parents visited. My younger sister has special needs, and my mother has asthma, so they kept their circle tight to reduce exposure.

When vaccines started to open the world earlier this year, my daughter began to spend more time with my parents again. That meant more time with Cathy, too.

Cathy was like an aunt to me. My daughter called her “Mamaw.” She loved spending weekends at Cathy’s house in Hayden.

The phone call

One morning as spring turned into summer, my mother called me. She was crying. She said in a small, scared voice that Cathy was sick. Cathy had a tumor in her lungs, and it had spread to her brain.

I couldn’t process the news for days. To be honest, I still haven’t.

I didn’t know how I was going to tell my daughter. I didn’t know how I could help my mother.

Unfortunately, I didn’t have much time to think about any of that. Cathy Parker died in late July after a painfully short battle with Stage 4 cancer.

With her gone, everything feels smaller. I can’t imagine how that feels for my parents, after knowing her for almost a lifetime. The shape of the world changed.

The coverage gap

If you ask my mother what the biggest change has been since, she’ll tell you it’s the anger. Cathy’s death reminds us every day that in Alabama, those who need help the most are often the last to get it.

Cathy was one of hundreds of thousands of people in Alabama without health insurance. That includes about 32,000 older adults (50 to 64 years old) who are in the Medicaid coverage gap.

Cathy did not qualify for Medicaid under the state’s stringent income limits. And her husband, Chuck, said her income was too low to qualify for a subsidized plan under the Affordable Care Act. She was three years shy of Medicare eligibility.

Chuck is a former Marine and Vietnam veteran. He receives benefits through the Department of Veterans Affairs for himself. But Chuck said he was turned away whenever he asked about extending them to his wife. The premium for the cheapest marketplace plan available to Cathy was more than $800 a month, Chuck said. That was more than they could afford.

They paid out of pocket to doctors who helped Cathy as much as they could. Even so, the question haunts us: Was Cathy’s time cut short because she was uninsured?

I believe so. Things easily could have been different.

A bad situation gets worse

Lack of coverage meant lack of access to lots of specialists. And it meant traveling more than an hour to find doctors who would take a patient paying out of pocket. Cathy and Chuck’s pockets often came up empty as the medical bills increased.

Compounding the tragedy, COVID-19 made access to life-saving care increasingly difficult. Several times, Cathy and Chuck drove to the hospital in the middle of the night. They waited hours in the emergency department, hoping for a bed that never materialized.

Chuck recalls that one night shortly before she died, Cathy had a seizure as the tumor grew larger in her brain. He immediately called 911.

They rode in an ambulance for more than an hour, only to be turned away by two hospitals diverting all incoming patients. They were overwhelmed by the overload of COVID-19 cases. Cathy eventually found a bed at a third Birmingham hospital. She passed soon afterward.

COVID-19’s burden on Alabama’s health care system has been enormous. In early September, near the delta variant’s peak, anywhere from 10 to 80 people a day in Alabama were waiting for an ICU bed “that is not there,” Dr. David Kimberlin of UAB told NPR. (Those numbers have improved since, with the Alabama Hospital Association reporting 167 ICU beds available statewide in early October.)

Adding to the challenges of pandemic response, our state has lost eight rural hospitals in the last decade. We surely could have used those resources during the pandemic. And we still might have them if Alabama had expanded Medicaid.

The what-ifs that haunt us

My family is one of thousands haunted by what-ifs resulting from Alabama’s failure to expand Medicaid.

What if Medicaid coverage had been available to Cathy?

It’s not hard to imagine a different outcome.

Cathy was born in Illinois, one of 38 states that expanded Medicaid to adults with low incomes. More than 600,000 people in Illinois now have coverage as a result, including many in Cathy’s family.

Chuck and Cathy considered moving to Illinois so she could get insurance through Medicaid expansion. But her illness progressed so quickly that moving was not an option. If Cathy had returned to Illinois before she started feeling sick, she might have qualified for expanded Medicaid. Doctors might have found her cancer more quickly. And that early detection might have saved her life.

But that’s not what happened. Instead, Chuck still opens the mailbox wondering what bill will arrive today. The last one he received was for $22,000, detailing charges for his wife’s end-of-life care.

Cathy did ultimately make it back to Illinois. Her friends and family honored her request to scatter her ashes there after she passed.

Expand Medicaid to prevent suffering

Cancer patients living in states that failed to expand Medicaid are more likely to die than those in states that have expanded, new research shows. In Medicaid expansion states, patients are more likely to get earlier-stage diagnoses and receive earlier interventions.

Medicaid expansion lowers mortality rates. It saves lives.

Alabama’s leaders have the resources and tools to expand Medicaid. But they keep passing the buck, blaming it on money or politics. Each day, struggling Alabamians are the victims.

Gov. Kay Ivey can begin the process of expanding Medicaid today. It would prevent death for so many people living in the coverage gap. And it’s the single most important public health intervention available to uplift Alabama’s hospitals, doctors and patients after the pandemic.

For now, we’re left with the irregular borders closing in on us. Our families are growing smaller, and especially after the year we’ve had, it’d be easy to feel like there’s nothing we can do. But that’s just not true. We can expand Medicaid. And we must.

It’s too late for Cathy. But it’s not too late for the governor to protect other Alabama families from enduring the pain we’ve experienced. All it takes is the stroke of a pen.

About Alabama Arise and Cover Alabama

Whit Sides is the story collection coordinator for Alabama Arise, a statewide, member-led organization advancing public policies to improve the lives of Alabamians who are marginalized by poverty. Arise’s membership includes faith-based, community, nonprofit and civic groups, grassroots leaders and individuals from across Alabama. Email: whit@alarise.org.

Arise is a founding member of the Cover Alabama Coalition. Cover Alabama is a nonpartisan alliance of more than 110 advocacy groups, businesses, community organizations, consumer groups, health care providers and religious congregations advocating for Alabama to provide quality, affordable health coverage to its residents and implement a sustainable health care system.