A decade ago I traveled to the Mississippi Delta, Texas's Rio Grande Valley, the rust belt of Illinois, the mountains of northern Idaho and the cities of eastern Massachusetts to learn how uninsured Americans manage (or don't manage) their health and health care in diverse circumstances. This spring and summer I returned to these communities to seek out the same individuals and families I'd met 10 years ago. I wanted to hear how they've fared in the wake of the Affordable Care Act.
It is clear to me that the June 23, 2015, Supreme Court ruling in King v. Burwell is good news for millions of middle-class Americans living in states whose leaders chose not to set up insurance marketplaces ("exchanges"). People in those states will not lose their insurance subsidies because the federal, rather than the state, government facilitates the exchange.
The states impacted by King vs. Burwell are, however, mostly the same ones impacted by the 2012 Supreme Court ruling (NFIB v. Sebelius), which allowed states to opt out of the ACAs Medicaid expansion. Lower-income people in those states will continue to fall into the coverage gap - the no man's land for people who earn too little to qualify for subsidized insurance through the exchange but who do not qualify for Medicaid in their home states. In some of those states, only extremely poor parents and children are eligible for Medicaid, leaving large numbers of people who are childless or near elderly or poor, but not destitute, unable to access health care.
Texas, one of the states that did not expand Medicaid, has a federally facilitated marketplace. During my return trip to the Rio Grande Valley, I was able to locate 18 of the 26 individuals and families (all adults) I'd met a decade ago. At the time, all were uninsured. Fourteen of the 18 are now insured - a figure that, on the face of it, looks encouraging.
However, of the 14 who are insured, five now are covered by Medicare via disability (as a consequence of becoming sufficiently disabled to qualify for SSI or SSDI). In other words, a third of the newly insured people are covered because their health deteriorated to a point at which they no longer are able to work. One person is covered by Medicare because she is older than 65. Two people have Medicaid, but only as a supplement to Medicare; no one qualified for Medicaid as their primary insurance.
All four of the uninsured people fall into the coverage gap; when they applied for insurance on the exchange, they found that their incomes are too low to qualify for subsidies. The experiences of the Martinez family (a pseudonym) are typical. Maria works full time in a food-service job that provides health insurance for her but requires a biweekly payment of $250 to cover her children. Her biweekly income is $500, so she had to turn down the coverage.
Her husband, Enrique, is a truck driver whose employer does not offer insurance, but he earns too little to qualify for a subsidized premium on the exchange and does not qualify for Medicaid in his state. For a short time their youngest child was eligible for Medicaid (CHIP), but then Enrique's income went up (marginally), and she no longer qualified.
In 2013, Enrique spoke with an ACA enrollment specialist who helped him apply for an exemption from the penalty for not having insurance. In 2014, he forgot to reapply and had to pay $190 in fines ($95 for himself and $95 for their 21-year-old child.) In the meantime, he takes medication for high blood pressure when the border with Mexico is safe enough for him to cross over and buy pills there. I make no claim to extraordinary prophetic powers, but my guess is that in another five years, he will join the ranks of disabled Texans.
That leaves five who are insured via the exchange and five now insured through employers - certainly a step up from when I first met them. However, all 10 of these Texans are unhappy with their insurance, for the most part because of high deductibles and copays.
Rosa, an energetic and articulate middle-aged woman, is reimbursed by her employer for part of the cost of the premium she purchased through the exchange. Because of her low salary, she chose a "bronze" plan with a low monthly premium (all that she could afford) but it also has a $4,500 annual deductible and a $1,000 copay for hospitalization. With a history of tumors in her breast and kidney, she needs scans that she cannot afford, even with insurance.
Shortly after the Supreme Court's ruling on the ACA, President Obama spoke from the Rose Garden celebrating our national declaration that health care is a right, not a privilege. Now the challenge is to turn that declaration into reality on the ground - even in states whose leaders would rather thumb their noses at the feds than allow residents of their state to access the care that they need to remain healthy.
For more on health insurance read Health Insurance Roulette: The House Always Wins. For more on the original research in the five states read Uninsured in America: Life and Death in the Land of Opportunity.