Rep. Lloyd Doggett (D-TX) introduced the “Cover Now Act” outside the U.S. Capitol on June 17, 2021. The bill intends to close the health insurance gap in Texas and 11 other states that have not expanded Medicaid to uninsured adults. A similar fix is part of the spending bill being debated in Congress this week, and would provide affordable coverage for more than 2.2 million Americans.

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Rep. Lloyd Doggett (D-TX) introduced the “Cover Now Act” outside the U.S. Capitol on June 17, 2021. The bill intends to close the health insurance gap in Texas and 11 other states that have not expanded Medicaid to uninsured adults. A similar fix is part of the spending bill being debated in Congress this week, and would provide affordable coverage for more than 2.2 million Americans.

Win McNamee/Getty Images

For years, Millicent McKinnon of Dallas went without health insurance. She was one of roughly 1 million Texans who make too much to qualify for Medicaid in the state, but too little to buy her own insurance. This was the situation until she died in 2019. She was 64 and had been unable to find consistent care for her breast cancer.

Lorraine Birabil, McKinnon’s daughter-in-law, says she is still grieving that loss.

“She was such a vibrant woman,” she says. “Just always full of energy and joy.”

Health insurance for roughly two million Americans is on the table as Congress considers a $3.5 trillion spending bill.

This plan would extend health care coverage to people living in the 12 states that have yet to expand Medicaid to their working poor through the Affordable Care Act. In those states, people who aren’t quite poor enough to qualify for traditional Medicaid — but can’t afford to buy their own insurance in the individual marketplace – are left in what’s referred to as the “Medicaid gap.” Like McKinnon, most of these people work but do not have affordable health insurance offered through their jobs.

If Congress approves the measure, those individuals would have access to a health plan through the federal government.

This could be a lifeline to people living in Texas, where 17.5% of the population is uninsured, the most in the country.

A career in health care doesn’t always include health benefits

McKinnon was a descendant of runaway slaves who settled in Chicago. As an adult, she moved to Dallas and worked in health care her entire career. Her very last job was as a home health aide — taking care of elderly and disabled people. But McKinnon didn’t make a lot of money, according to Birabil, and didn’t get health insurance.

And that’s why, when McKinnon started feeling sick, she put off going to the doctor.

“She didn’t have the coverage,” says Birabil, an attorney who served briefly in the Texas House of Representatives. “She was doing everything she could do to live a healthy lifestyle. And so when she realized that something was wrong and she went to find out what it was, it turned out that it was Stage 4 breast cancer.”

In the year after her diagnosis, she bounced around hospitals. Doctors would stabilize her and send her home. Without coverage, consistent treatment was hard to find. Her family looked for insurance but found nothing.

All they could do in the end was be there as she slowly died.

“At the time that we found out, you know, we were also pregnant,” Birabil says. “And she kept saying, ‘I just want to meet my grandbaby.’ And she didn’t make it.”

A month before her granddaughter was born, McKinnon died. She was months away from getting Medicare.

Birabil says the health care system her mother-in-law spent her life working in ultimately failed her.

Health coverage could help decrease inequities among people of color

Patients and health advocacy groups have been pleading with state lawmakers for years to cover these uninsured Texans.

“But purely political opposition from our highest leaders, the governor and the lieutenant governor, is enough to block progress on an issue that is a basic right,” says Dr. Laura Guerra Cardus, deputy director for the Children’s Defense Fund in Texas.

That’s why Guerra Cardus and other advocates across the country are now looking to President Biden and Congress to fix this problem. The Democrats’ $3.5 trillion spending bill — it has been called Biden’s “human infrastructure” bill — includes money to extend health insurance to the uninsured through both the online health insurance marketplace and state Medicaid programs.

“We are asking them to choose to make America a country that does not block health care from anybody,” Guerra Cardus says.

When it first became law in 2010, the Affordable Care Act intended for every state to broaden eligibility for Medicaid coverage, allowing access to uninsured adults with incomes up to 138 percent of the poverty line. (Those with higher incomes could buy subsidized coverage on the online insurance marketplaces.)

However, in its 2012 ruling on the ACA, the Supreme Court allowed states to choose whether or not to expand Medicaid. Many states immediately implemented the change, while others took longer. Some Republican-led states were forced to expand Medicaid after voter-led ballot initiatives — most recently in Oklahoma and Missouri.

Texas is the most populous of the 12 states that still have not expanded Medicaid. The rest include the 7 states of the Southeast (Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, and Tennessee) and the states of Kansas, South Dakota, Wisconsin, and Wyoming.

This is the first time since the Affordable Care Act went into effect that Congress may have enough votes to address this issue, says Jesse Cross-Call, director of state Medicaid strategy for the Center for Budget and Policy Priorities.

“This really is the unfinished work of the ACA to ensure that everybody in this country who is poor or of moderate incomes has access to affordable health care coverage,” Cross-Call says.

Most of the uninsured people who would benefit from the Congressional fix are people of color who live in the South.

The racial disparity is even starker in Texas — where about 70% of folks in the health coverage gap are Latino or Black.

But this insurance lifeline is competing for money and attention with other priorities.

POLITICO reported Tuesday that this plan could be curtailed as Democrats negotiate a trimmed-down version of the spending bill.

For example, some lawmakers have suggested they would be willing to scale back health care coverage to those individuals in the Medicaid gap to just five years.

U.S. Rep. Lloyd Doggett, D-TX, chair of the House Ways and Means Health Subcommittee, said in a statement Tuesday that Congress “must permanently close this coverage gap,” so that people living in those Republican-controlled states are never again denied access to health care.

“Closing the coverage gap means getting access to a family physician, essential medicines and other health care for [millions of people] who have been left out and left behind for more than a decade,” he said.

Some Democrats have also raised political concerns –- namely that extending coverage in non-expansion states would be rewarding the Republican leaders in those states that have blocked Medicaid expansion for years.

Guerra Cardus says that argument “is so far from the point” when it comes to why Congress should address the coverage gap.

“This is about people who are dying and suffering from preventable treatable illnesses in the 21st century in our rich country,” she says.

This story comes from NPR’s health reporting partnership with KUT and KHN (Kaiser Health News).