Culture of Health Blog

Closing the Medicaid coverage gap would save lives, reduce costs, and help eliminate the racial and ethnic health disparities that have persisted for generations.   

But 12 states have refused to expand their Medicaid programs under the ACA, denying health care coverage to more than two million people—disproportionately people of color—who would qualify for the program if expansion was implemented in those states. These holdout states have refused to budge even as the federal government would cover the vast majority of expansion costs; even as Medicaid expansion states reap a variety of health and economic benefits; and even as the United States remains in the throes of a deadly pandemic.

Rapid response is synonymous with moments of crisis. From first responders to communication experts, responding quickly to a crisis is critical for community health and well-being. But what about rapid response research? 

COVID-19 has epitomized a complex crisis of infectious disease, food and housing insecurity, and mental distress. People who are Black, Latinx, Native American, and living in low-income households are the most vulnerable to these conditions. It is clear that health and social policies enacted during the pandemic will affect communities for decades to come. 

To inform rapid response research and policymaking, my team at Boston University and I developed the COVID-19 U.S. State Policy database—also known as CUSP—in 2020. This resource aims to inform health and social policy decisions that promote health equity and focuses on policies that affect vulnerable and historically excluded populations. Now over a year after its inception, we are assessing what we have learned and where we have yet to go.

Editor's Note: The health impacts of our rapidly changing work environment are often overlooked. Since 2018, when this post was first published, we reported on the health equity implications of unstable incomes, unpredictable schedules, and lack of access to paid sick leave. In the wake of COVID-19, these questions about health equity are more important than ever. See what we’ve learned, and apply for funding to explore what the next five to 15 years may hold for workers.

When her regular job hours were cut, Lulu, who is in her 30s and lives in New York, couldn’t find a new full-time job. Instead she now has to contend with unsteady income and an erratic schedule juggling five jobs from different online apps to make ends meet. Cole, in his first week as a rideshare driver in Atlanta, had to learn how to contend with intoxicated and belligerent passengers threatening his safety. Diana signed up to help with what had been described as a “moving job” on an app that links workers with gigs. When she arrived, she had to decide whether it was safe for her to clean up what looked to her like medical waste.

Work is a powerful determinant of health. As these stories about taxi, care, and cleaning work from a 2018 report show, it is a central organizing feature of our lives, our families, our neighborhoods, and our cities. And work—its schedules, demands, benefits, and pay—all formally and informally shape our opportunities to be healthy.

But the world of work is rapidly changing. Job instability and unpredictable earnings are a fact of life for millions. Regular schedules are disappearing. With “predictive scheduling,” a retail worker today is essentially on call, making everything from booking child care to getting a haircut impossible until the work schedule arrives. Health and other fringe benefits are less often tied to the job. Nearly six in ten low-wage workers today have no paid sick leave. Two-thirds lack access to employer-based health care benefits.

Why States Matter

States have long been laboratories for innovations that influence the health and well-being of their residents. This role has only expanded with the greater flexibility being given to the states, especially as gridlock in Washington, D.C. inspires more local action. The bevvy of new governors and state legislators who took office early this year also widens the door to creativity.

Medicaid is perhaps the most familiar example of state leadership on health. With costs and decisions shared by state and federal governments, the program allows state policymakers to tailor strategies that meet the unique needs of their residents. Among other examples, efforts are underway in California to expand Medicaid access to undocumented adults, and in Montana to connect unemployed Medicaid beneficiaries to employment training and supports.

In Washington state and elsewhere, Medicaid dollars can now cover supportive housing services, while Michigan is among the states requiring Medicaid managed care organizations to submit detailed plans explaining how they address social determinants of health for their enrollees. All of this experimentation is happening as states struggle to control the growth of their health care spending—a balancing act of immense proportions.

Today, nearly 50 percent of children—over 35.5 million—are enrolled in Medicaid or the Children’s Health Insurance Program. These programs are essential to low-income children, and particularly children of color, who are more likely to lack access to other forms of health coverage. Both programs have been providing medical care to kids for about half a century.

However, the treatment of chronic illness, special needs, and adverse birth outcomes often receive higher priority attention than preventive interventions. This is because treatment for medically complex conditions drives costs in the health care system. So it is where state Medicaid agencies, and the managed care organizations (MCOs) that help them control cost, utilization and quality, invest their time and energy.

With most of the focus on treatment, it’s often difficult to make the case for community-based, family-centered prevention. But some states have started to implement prevention activities addressing childhood obesity and other areas of health promotion and disease prevention.

There’s no bus service in his small town in rural North Carolina, so Dean* drives 10 miles to The Free Clinics ("Clinics") in Hendersonville every couple of weeks whenever he has money for gas.

Staff there helped him find affordable medications and treatments for cancer and for his shoulder, which he injured by falling 20 feet on a construction site. He’s unable to read due to learning disabilities, so they’ve also helped him find lawyers to file disability claims.

Dean is also one of the patients who attends the Clinics’ Bridges to Health ("Bridges") program, a drop-in group session where patients can discuss their social and emotional concerns as well as medical problems. He has battled depression since the age of five after enduring early childhood trauma. He credits the Bridges sessions, along with the Clinics’ holistic care, with easing his depression and improving his physical health, as well as “opening up avenues for me to get help.”

The amputation was scheduled for that day. John’s* uncontrolled diabetes had stopped blood flow to his lower leg. With the tissue starting to die, it seemed inevitable that his foot would have to be removed to save his life.

Thankfully, a team I work with had recently helped bring telehealth services to the rural Colorado hospital where John had been admitted. A cloud-based video system connected to electronic health records enabled his doctor to consult with an infectious disease specialist hundreds of miles away in Denver. The specialist suggested one last “cocktail” of antibiotics, to be administered by I.V. The protocol worked. John kept not only his foot, but also his livelihood as a rancher: his ability to graze cattle, grow wheat, and provide for his family.

Medicaid is the largest health care program in the United States and impacts the lives of more than 76 million Americans, nearly one-quarter of the nation’s population. The program can play a powerful role in influencing the health and well-being of individuals and families.

State Medicaid programs can only be truly successful, however, if they are responsive to the needs and priorities of the clients they serve—not providers, but patients and their families. Medicaid officials understand this. However, in the resource- and time-constrained environments in which Medicaid staff operate, finding the right avenues for gathering meaningful consumer input can be a challenge.

The Robert Wood Johnson Foundation has been trying to address these challenges through its work to transform health and health care systems. As part of these efforts, the Foundation along with the Center for Health Care Strategies recently engaged experts, including representatives from across the patient advocacy world, around this issue. These experts include leaders from Altarum, American Cancer Society Cancer Action Network, Community Catalyst, Georgetown Center for Children and Families, Nonprofit Finance Fund, and the Patient Advocate Foundation.

In January 2018, the Hollis Innovation Academy, a K-8 school, opened a dental exam room. Though it may seem unusual to see a dentist’s chair in a school, its presence reflects years of learning within this Atlanta community. Hollis's students live in English Avenue/Vine City, an area with one of the highest poverty rates in Atlanta. They also reside in one of three zip codes with the highest oral cancer rates in the city.

Early in my career as an ear, nose and throat specialist, I witnessed a deeply troubling pattern: on my first visit with a patient, I would diagnose him or her with advanced head and neck cancers. There would have been good treatment options if these patients had been seen much earlier. But time and time again, all we could do was rush the patient into an operating room, put in a tracheotomy to control the airway, and set up end-of-life care. I kept thinking that someone needed to get to this issue much sooner so that people wouldn’t die from something that could be treated effectively if caught sooner.

Eventually, I decided that person was me.

My boss and mentor Andy Hyman was the kind of visionary leader who instilled a deep sense of hope in everyone he came into contact with. He inspired in us a feeling that anything was possible. It’s this kind of unwavering hope that is needed when pursuing seemingly insurmountable goals—like the goal of ensuring that everyone in America has access to affordable, quality health care coverage.

Andy led the Robert Wood Johnson Foundation’s (RWJF) work on health insurance coverage from 2006 until shortly before his untimely death in 2015. One of the things I vividly remember was his deep conviction—even when progress seemed elusive—that we could make major strides toward improving coverage for those who needed it the most. 

Among his many wonderful qualities, Andy had keen political foresight that revealed itself when I started working with him back in 2006. He predicted a window to put the spotlight on health reform in 2008, regardless of who was elected president. In preparation, he led our team in building evidence to make the case for health reform and in bolstering the capacity of community of advocates nationwide who could work on state-level reform. Once the Affordable Care Act (ACA) was enacted, Andy worked tirelessly to help implement it in the states.