In previous posts, I shared stories of Americans who had been uninsured when I first met them a decade ago and who, in the wake of the ACA, now are insured. These stories were inspiring, encouraging and – in a few cases – disappointing in that health insurance alone cannot make up for a lifetime of sub-par living conditions, harmful working conditions, and the cumulative ill effects of inadequate health care.

As the president-elect and Republican congressional leaders are reiterating promises to repeal the Affordable Care Act, it’s crucial to remember what it’s like for Americans to try to scrape by without dependable access to health care. The experiences of people living in states that elected NOT to expand Medicaid eligibility under the ACA serve as a wake-up call for what things were like during the bad-old-days. In this article published in Health Affairs I share the story of Texas parents valiantly struggling to care for a child with disabilities, even while their own health deteriorates due to lack of medical attention.

I ended that article with a section I called “Playing Prophet.”

For the time being, at least, it seems unlikely that the Texas health care landscape will change. The barrage of anti-Obamacare radio, television, and billboard ads I heard and saw when I visited Texas during my research represent a well-financed campaign that, unfortunately, has convinced even those people who would benefit the most from the ACA.

Luis and Daniela’s situation probably won’t change much, either. Luis will get older, still working long shifts driving trucks and loading and unloading them. Daniela will age, too, still lifting Alexa. Alexa will never be able to care for herself. And her brother, now a teenager, will age out of CHIP and either become one of the lucky few in the Rio Grande Valley who finds a job that offers insurance or hope and pray that he remains healthy enough not to need much medical care. It’s likely that the next time I visit them, either Luis or Daniela, or possibly both of them, will have become too disabled to continue working and finally will have health care coverage through Disability—which will come at the price of a substantial drop in family income as well as a blow to their self-esteem as providers. It’s hardly an ideal solution for their family or for Americans overall.

Post-election, this prophecy actually feels overly optimistic. In light of Republican promises to privatize Medicare — as well as the president-elect’s mocking impromptu performance and history of unethical practices regarding people with disabilities — I fear that the family’s worry that Daniela will end up in a horrid, underfunded institutional will happen sooner rather than later.

This brief is offered as a contribution to current deliberations regarding Medicaid expansion and healthcare reform in the Idaho state legislature. Idaho, like many other “blue” states, did not accept the Affordable Care Act’s Medicaid expansion. As a consequence, Medicaid in Idaho, at this time, is only available to children, pregnant women, parents of children under the age of 19, disabled people and the elderly. Even within those categories not many meet the Idaho Medicaid criteria: A family of 4 must earn less than $650 / month to qualify.

Research Findings

In 2003 I conducted in-depth interviews with uninsured individuals and families in northern Idaho, south-central Illinois, Texas, Mississippi and Massachusetts. All 37 Idahoans – at the time – were in the work force, though many were struggling to maintain a level of health sufficient to allow them to continue working and caring for their families. As I wrote in Uninsured in America: Life and Death in the Land of Opportunity (University of California Press, 2015), I was struck by the “rugged Idahoans” who shared with me stories of swallowing handfuls of Ibuprofen each day in order to manage pain, using a pocketknife to shave off bone spurs from their feet, turning to friends who worked as aides at nursing homes for help bandaging wounds, and confronting medical bills of $100,000 or more in the wake of an accident or health crisis.

In 2015 I returned to Idaho and the other four states in which I had carried out research in 2003.

  • In Idaho I looked for 37 people and was able to re-interview 20 of the 37.
  • Five of the 37 were dead: all five had passed away prematurely (in their 40s, 50s or early 60s).

One of the dead, who passed away at the age of 58, had worked in the mines his entire life. He left behind a wife and children.

  • Five are now recipients of SSI or SSDI by virtue of having become too disabled to continue working.

Jane used to work at three jobs: cleaning houses, doing laundry in a nursing home, and waitressing at a café. “Eventually I cut back to just the café job because it was my social life,” she explained, “but finally I couldn’t do it anymore. I even kept working through double pneumonia because I had to pay my bills, but eventually I had to stop because of my legs – you see my feet and ankles hurt and then turned black.” When she was finally diagnosed with diabetes at a free clinic she was told that she most likely already had diabetes for seven to ten years, but it had never been diagnosed or controlled. The staff at the free clinic would give her free samples of her medication whenever they had it available, but that was not a consistent source. At age 57 Jane was granted Disability (SSDI), but then had to wait two more years to become eligible for Medicare. By 2015 was able to access care through Medicare and Medicaid, but it was too late. She now is housebound.

  • Five now receive insurance through their employers and none of the five are able to cover their dependents through their employers. According to the Idaho Department of Labor, approximately 95% of Idaho businesses employ less than 50 workers, exempting the businesses from the ACA mandate to provide health insurance.

Marla and Peter, parents of three young children, were uninsured when I met them in 2003 and remained uninsured until a year or so ago. This was challenging because Peter has a blood disorder, ulcerative colitis and glaucoma. Throughout his adult life he has worked steadily for a company that he likes and likes him, but does not provide health insurance. When their kids reached school age Marla took an office job, but it did not provide health insurance. To take care of her family’s health needs, Marla drove them to doctors all over the northern part of the state – sometimes putting hundreds of miles on the car. At each office she would accumulate a manageable bill that they tried to pay off over time. Typically, the doctor would not see them again until they fully paid the bill. Knowing they needed healthcare coverage, Marla began to work for another small business owner who agreed to pay half of their monthly health insurance premium. But the remaining half was so high that after it was deducted from her salary she ended up taking home about $5 / hour. In 2015 she moved to a job with somewhat better insurance. Her premium now is $250 / month, but the deductible is $3000 per person and there are hefty co-pays and co-insurance.

Al, a farmer in his early 60s, was embarrassed to admit to liking “Obamacare.” But he certainly has benefitted from expanded healthcare access. Diagnosed with lung cancer a number of years ago, he had not been able to obtain health insurance before the ACA because of his pre-existing condition. During those years, hospital bills were as high as $300,000 annually, leaving him in horrendous debt. Now he pays $12 / month for insurance through the Exchange and his doctor is satisfied that “there are no new tumors.”

  • Four had moved out of state, primarily in order to access healthcare in Washington or other states that have expanded Medicaid under the ACA. No one in Idaho was receiving Medicaid in 2015.

Chris and Brittany, a vivacious couple in their thirties, moved from Idaho to Washington several years ago after Chris injured his leg on a construction job and the workers compensation ran out before the surgeries he needed were completed. While Chris was out of work Brittany took a job at a restaurant in order to tide them over. With her salary they earned too much for Chris to qualify for Medicaid and get his leg fixed. But without that salary they couldn’t survive. Today, they both are healthy and productively employed in the state of Washington, where they are raising their children and waiting for the day when it will be possible for them to return home to Idaho.

 Policy Recommendations

  • Senate Bill No. 1204, an act that proposes expanding Medicaid eligibility to persons under age 65 whose modified adjusted gross income is one hundred thirty-three percent (133%) of the federal poverty level or below, is an excellent first step towards allowing all Idahoans access to appropriate healthcare services and thus the ability to maintain better health.
    • Those with incomes below 133% of the federal poverty level cannot afford to pay for appropriate medical services. As a consequence, their health deteriorates and/or they amass medical bills that eventually are passed on to the counties or the state.
    • Idaho hospitals and clinics, for the most part, already accept Medicaid payments. Thus, the infrastructure is in place and implementation of this expansion should not involve additional costs or bureaucratic complications.
  • The proposed Primary Care Access Program (PCAP) is unlikely to substantially improve access to healthcare for Idaho’s low income residents.
    • While primary care is the core of any healthcare system, the reality of today’s complex medical world is that primary care visits alone are rarely sufficient for diagnosing or treating serious illness. For primary care providers it is frustrating not to have the capacity to send patients for tests, procedures or specialist care. Patients will find themselves in the frightening position of being told by a primary care provider that they need certain treatments but that the primary care program does not cover them.
    • There is no evidence that access to primary care alone, without parallel access to other medical services, improves the health of populations.
    • According to the published description, “The program requires payment for services on a sliding scale fee, which encourages greater personal responsibility for the patient’s own health.” Given that this program is aimed at people with very low incomes, it is more likely that fees will function as deterrents to care rather than as encouragement of personal responsibility.
    • In my research in Idaho I have never spoken with a single individual who can afford healthcare but irresponsibly chooses not to seek it. The most common reasons for not seeking care are: lack of insurance, deductibles that are too high to meet, lack of transportation to healthcare centers, inability to take off time from work during clinic hours.
    • By limiting access to healthcare to specific health centers, this proposal fails to address the needs of many Idahoans who do not live near any of the specified health centers.

 

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Acknowledgments: In addition to the uninsured and formerly uninsured individuals whom I interviewed, I spoke with Terri Sterling, ICAN; Charlotte Ash, Snake River Community Clinic; Ken Whitney, Jr., Mayor of Troy; Dr. Richard Thurston, St Maries Volunteer Clinic; Donald Duffy, Panhandle Health District; Moriah Nelson, Idaho Primary Care Association; Pam McBride, Clearwater Valley Hospital, Orofino; Ashley Piaskowski, Heritage Health, Coeur d’Alene; Dr. Ted Epperly, Idaho Healthcare Coalition and Family Medicine Residency of Idaho; Stephen Weeg, Board Chair, Idaho Health Insurance Exchange. I thank all of these people for taking the time to share their expertise with me. All opinions and errors are my own.

 

Contact Information: Susan Sered, PhD; Department of Sociology, Suffolk University; 73 Tremont Street, Boston MA 02108

Email: ssered@suffolk.edu

For more on this research see Health is Where the Home Is   Health Insurance Roulette: The House Always Wins   The State(s) of the Affordable Care Act     

ACArally

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 in order to learn how uninsured Americans manage (or don’t manage) their health and healthcare in diverse circumstances. This spring and summer I returned to these communities to seek out the same individuals and families I’d met ten years ago. I wanted to hear how they’ve fared in the wake of the Affordable Care Act.

It is clear to me that June 23, 2015’s 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 v. 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 healthcare.

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, 5 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 the point in which they no longer are able to work. One person is covered by Medicare because she is over 65. Two people have Medicaid but only as a supplement to Medicare; no one qualified for Medicaid as their primary insurance.

All 4 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 bi-weekly payment of $250 to cover her children. Her bi-weekly 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. 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 re-apply 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 5 who are insured via the exchange and 5 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 co-pays. 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 a $4500 annual deductible and $1000 co-pay for hospitalization. With a history of tumors in her breast and kidney, she needs scans that she cannot afford even with insurance. I fear that she too, will join the growing ranks of Americans who are disabled.

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 in order 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