Tag Archives: health

The “Price” of Health

 I’ve spent far too much time over these past months trying to understand why the current administration does not seem to understand (or care about?) basic health care facts:
  1. All people get sick and injured over their lives; all people feel pain; human experience is unpredictable and none of us knows when disaster will strike; and all (or at least most) people try hard to manage their pain, disabilities and illnesses so that they can continue to engage in the normal activities of daily life.
  2. All people need the help of medical experts in order to minimize the damage caused by disease and injury. In the twenty-first century, expert help and procedures and remedies involve substantial expenses.
  3. Even with careful planning, most Americans cannot save up enough money to cover these expenses, especially in cases of long-term or chronic health challenges.
  4. Health “insurance” that requires people to guess what care they will need (so-called “more choice for the consumer”) presumes that people can prophesy the future and / or avoid all illness and injury.
  5. When members of our communities cannot access appropriate health care there are consequences for everyone: Infectious diseases spread; people miss work and vital businesses and services become understaffed; production drops; kids fall behind in school; and some people turn to illicit substances (including alcohol) in order to self-medicate.
  6. See point #1.

These points are consistent with what most people observe and experience in their own families and communities and should, one might think, serve as the basis for health care policy. That, however, is not the case. As regarding many other issues, the current administration invokes an alternative set of “facts” regarding the nature of health and health care. These “facts” do not tend to be articulated in a coherent statement, yet they do emerge as a sort of sub-text in a variety of situations.

Ebola Winners and Losers

Last week newspapers reported on Health and Human Services Secretary Tom Price’s first trip overseas to Liberia, the West African country where more than 4,800 people recently died from the spread of the Ebola virus. A new Ebola outbreak seems to be emerging at this time but Secretary Price did not address that. Rather, he made a point of praising survivors of the earlier outbreak, declaring that: “We celebrate their victory over Ebola.” Now, from my perspective as a medical sociologist, it’s hard to see that those who survived Ebola are deserving of any particular praise. Is Price’s (unspoken) implication that these survivors somehow worked harder than those who died? That they were smarter or made better choices? That they were more morally deserving to live? And in praising the survivors was Price implicitly criticizing those who did not survive?

“Waging war” is not the solution this country needs

At the time of the first outbreak, I critiqued the U.S. rhetoric of “waging war” on Ebola. I voiced concern that we have come to rely on our military as the only governmental agency capable of responding to any sort of crisis. And I pointed out that our America inclination to frame social problems in terms of war underpins our troubled history of crusades to stamp out vices and diseases (the two words often are used interchangeably) ranging from alcoholism to obesity to cancer. Declaring war on disease sends the message that the sufferer is somehow at fault and wars on disease too easily turn into wars on those who embody the disease. Our racially driven “war on drugs,” more aptly described as a “war on drug users,” and has led to local police departments being armed with military equipment (including tanks) and to the highest rate of incarceration in the world.

Bleak Binary Terms 

In the era of Trump and Price the rhetoric of “victory” takes on whole new levels of significance. From the start, the Trump campaign framed the world, and the people of the world, in bleak binary terms of “winners” and “losers.” Famous Trump remarks include “Believe me. You’ll never get bored with winning. You’ll never get bored!” and “Work hard, be smart and always remember, winning takes care of everything!” Candidate Trump’s comment that best sums up the winners vs. losers world view concerned Senator John McCain: “I supported him, he lost, he let us down. But you know, he lost, so I’ve never liked him as much after that, because I don’t like losers…He’s not a war hero…He’s a war hero because he was captured. I like people who weren’t captured.”

The Price of Winning and Losing

In the world of health and health care, this paradigm is dangerous. It comes close to the rhetoric of the eugenics movement (developed in the United States and most famously and energetically adopted by the Nazis) – the idea that some people are inherently better than others (the winners) and that those people deserve social praise, resources, and encouragement to reproduce themselves. Losers, in contrast, should be marginalized and discouraged from reproducing.

Today, the Trump Administration unveiled its first budget – a budget that rewards strength and punishes weakness. According to the New York Times, “The document, grandly titled ‘A New Foundation for American Greatness,’ encapsulates much of the ‘America first’ message that powered Mr. Trump’s campaign. It calls for an increase in military spending of 10 percent … [It also] calls for slashing more than $800 billion from Medicaid, the federal health program for the poor, while slicing $192 billion from nutritional assistance and $272 billion over all from welfare programs [over the next decade].”

Winners and losers, indeed.

 

See  the following for more on winner/loser paradigm, the health care system, and the rhetoric of war on the Ebola outbreak:

Pink Ribbon Extravaganza

Health Insurance Roulette: The House Always Wins

Why Can’t the US Help Solve Ebola Outbreak without “Waging War” and “Sending Troops.”

Health is Where the Home Is

Christmas House Decorations wallpapers

Maybe it’s because of the bitterly cold temperatures at night this week, or maybe it’s my own visceral response to overdosing on television shows with happy family Christmas scenes and neighborhood holiday lighting competitions, but I’ve been giving a lot of thought recently to how housing and homes impact health.

About a decade ago I traveled to the Mississippi Delta, Texas’s Rio Grande Valley, south-central Illinois, the mountains of northern Idaho and the cities of eastern Massachusetts to speak with individuals and families scraping by without health insurance. Most of these people worked in construction, retail, agricultural or service jobs. The details varied, but across the country I heard about spiraling poor health, declining employability and growing poverty. In 2015 I made return trips to check in with the people I’d met ten years earlier.[i] While I was able to locate nearly all of the original interviewees who owned their homes (including very modest homes of immigrants in colonias in the Rio Grande Valley), I only located a minority of the renters. Typically, their original phone numbers were disconnected and original addresses belonged to subsequent tenants. When I knocked on neighbors’ doors the most common response was, “I don’t know [so-and-so]. I’ve only lived here for a few months myself.”

In previous posts I’ve written about marginalized Boston-area women who cycle through shelters, jails and the streets. In those contexts the “problem of homelessness” is relatively easy to see and define – all I had to do was visit shelters or walk through the public parks in which people without homes congregate during the day. But for me, it took weeks of trudging through muddy housing developments on the outskirts of Mississippi towns and knocking on doors in public housing complexes in a central Illinois cities to get a glimpse of the lives of those less visible Americans who generally manage to rent housing of some sort for periods of time but teeter on a financial edge that keeps them moving from place to place.

Unfinished housing project at 47-04 198th St. in Auburndale stands abandoned for several years.

On my 2015 reprise tour I looked for a total of 145 people in five states and was able to locate 98 of them. The missing people were not evenly distributed either geographically or by race. In Mississippi, the state that consistently has the poorest health profile in the country, I managed to locate only 11 of the 28 people whom I sought. The utter disappearance of 17 of 28 people did not surprise one local healthcare advocate (he asked to remain anonymous): “People move away to Birmingham or Tupelo to look for work. There is very little home ownership in Mississippi. The common thing is ‘lease to own’ in which a developer arranges for people to ‘lease’ (pay rent) and after 20 years they have an option to buy – to switch the rent to a mortgage. But people almost never make it to the 20 years so the developers keep leasing the same houses over.” Many of these houses would not pass even the most cursory safety inspection in other states.

I was able to locate 70 out of 88 white people I’d originally interviewed and 21 of 28 Latinos / Latinas (mostly in the Rio Grande Valley), but I only found 10 of 29 African Americans. This is consistent with national patterns. According to the US Census, the homeownership rate for the fourth quarter 2014 for non-Hispanic White householders was highest at 72 percent. The rate for All Other Races householders was 55 percent. And for Black householders it was only 42 percent. According to researchers Gregory Sharp and Matthew Hall, “The 1968 passage of the Fair Housing Act outlawed housing market discrimination based on race. …  However, emerging racial disparities over the next three decades resulted in black owners who bought their homes in the 2000s being 50 percent more likely to lose their homeowner status than similar white owners.” Even after adjusting for socio-economic characteristics, debt loads, education, and life-cycle traits like divorce or job loss, blacks were more likely to lose their homes than whites.”

Shanice’s Story

I first met Shanice in 2003 at one of the larger Black churches in Decatur, IL – a church known for its strong fellowship and advocacy on behalf of the community. She was happy to share her story with me:

“When I was 18 I worked a job, it was right after coming out of high school. No insurance and they said I wasn’t eligible for Medicaid. My doctor said that I needed to get my tonsils taken out cause they were so swollen it was almost causing me not to be able to breathe. … And so I had to go on like a payment plan with the doctor. … The whole surgery, the surgeon, the day at the hospital and then I had a setback and had to go back into the hospital cost $15,000. During the following year collection agencies called day and night, often making threats. They’d [especially] call on Sunday nights. Said that I would be going to jail if I didn’t pay them.” At age 20, Shanice filed for bankruptcy.

A few years later Shanice gave birth to her daughter. By this time Shanice was working for a storefront loan company that provided health insurance for her, but not for her daughter (she would have had to pay a premium that she could not afford on her salary.) A few years later their statuses reversed: When Illinois expanded Medicaid for children (Kid Care) her daughter became covered but Shanice, having made the decision to go back to school and learn a skill, became uninsured. Shanice was well aware of the risk she was taking was determined to build a better future for herself and her daughter. “It wasn’t just me living this carefree don’t worry about tomorrow life. Now I have someone that was dependent on me so I had to make decisions for the future. … We moved into a nice apartment, we got power, cable, phone and I got a new car.” During that time Shanice began to eat healthier meals and lost over one hundred pounds. In order to pay tuition, “I got Pell grants and student loans.” I asked Shanice how she was able to get credit to buy a car so soon after declaring bankruptcy. “Oh, they go after bankruptcy people like crazy [to sell them stuff]. I was getting credit cards in the mail every night.”

In 2003, after spending time with Shanice and her daughter at the church where they sang in the choirs, participated in groups and clubs that helped them focus on making good decisions, and volunteered helping out the poor in their community, I described Shanice in my notes as “a young woman on the way up.” She was working part-time at her church with youth and looking for her first professional job. “I just completed 1540 hours of cosmetology school and I just graduated last Friday.”

When Shanice and I walked out of the small room where the church choir stored its robes, I asked her if as a cosmetologist she would get health insurance. She answered, “I can get a job but in this field they don’t give insurance. You have to arrange that yourself.”

….

A year or so later I spoke with Shanice again. With a sense of resignation, she told me that medical and credit card debt had piled up and she was preparing to declare bankruptcy a second time.

….

Fast forward twelve years. I returned to the address at which Shanice was living when I initially met her. She had moved on and none of the current neighbors even knew her name. On USSearch I found six other addresses for her and visited each one of them. Two of the addresses did not exist. One was in a decrepit housing project that had been shut down for several years, though some people continued to squat in the apartments. (I was warned that mostly gang members were there and that it wouldn’t be safe for me to go poking around.) One address was in a middle-class, white neighborhood – none of the neighbors whom I could find knew of anyone named Shanice. Two were inhabited by other Black families who had moved in recently. Stopping by her church, I was told that, “Shanice is no longer a member of this church. She’s moved.” No one at the church knew where.

Health and Housing

It’s not hard to understand the devastating health consequences of homelessness. Living on the streets exposes people to cold, rain and assault. Without a home it’s a challenge to eat proper meals, get enough sleep and keep oneself and one’s clothing clean. The stress of not knowing where one can lay one’s head contributes to misuse of drugs and alcohol. And infections of various sorts tend to spread quickly in crowded homeless shelters. Like the people in the shelters, these health consequences are easily identified and counted.

The health consequences of moving around are less immediately visible to the casual eye. But at a community health center in Decatur Illinois, nurse administrators Karen Schneller and Tanya Andricks elaborated on ways in which churn in housing is related to churn in healthcare. Different states and even different counties and towns have different healthcare resources available to residents. Different providers have different medication preferences and treatment protocols so people stop and start treatments. Even with dedicated staff efforts, it is impossible to provide follow-up care for patients who can’t be reached – whose phones are turned off and whose mail is returned “addressee unknown.”

Jenny Trimmell, public health administrator and Melissa Rome, community liaison at the Vermilion County (Illinois) Health Department explained that children like Shanice’s daughter particularly suffer from frequent moves. “When the Cabrini Green housing project in Chicago was closed to pave the way for gentrification former residents were offered vouchers by the Housing Authority and promised housing and jobs in towns in central Illinois. But there was not enough housing and not enough jobs, so people go back and forth to Chicago. There was a cultural adjustment for many moving from Chicago to more rural downstate.  People were unaware that services outside of the city of Chicago may be limited, such as access to health care providers; bus services that do not run 24/7, etc.  Everyone is frustrated. The kids are in and out of schools and medical records kept by parents are incomplete or non-existent. It is difficult for the Health Department to determine immunization status for these children and frequently immunization series have to be started over due to the unknown immunization status.” Trimmell and Rome went on to explain that without the kinds of community support children develop when they stay put in one school, “there are high drop-out rates, teen pregnancies and drug use.”

Musings

Getting to know and then losing track of Shanice and others in similar situations has made me more attuned to the health privileges of stable and secure housing. My home allows me to accumulate the material objects that anchor and enhance my life, both in immediate ways by giving me space to store medication and in less tangible ways by grounding me in the photos, books and furnishings that tie me to my past and to the people I love. My home provides a hidey-hole for times when the outside world feels overwhelming. It gives me a familiar bed and private bathroom when I am sick, and a kitchen in which I can cook the food that I want to eat when I want to eat it. My home allows me to cultivate neighbors who can lend a hand at times of need and offers me the space to nurture those special bonds with the family that looks out for my well-being. In my own home I have the power to keep out rats, roaches, mold and the dust and down that I am allergic to. I am not dependent on the vagaries of landlords or property management companies. No less important, my home gives me an address at which I receive and retain the paperwork that helps keep my financial, medical and legal life in order as well as reminders of when and where to exercise my right to vote (yes – for candidates who support legislation that makes my community healthier).

I plan to return to Decatur next week and resume my search for Shanice. Maybe she has found another supportive church community somewhere else in the area. Maybe she finally has her healthcare coverage straightened out. Maybe her daughter has escaped being one of the kids who’s been subjected to multiple rounds of vaccinations. Maybe she’s become the star of her high school marching band or debate team. I hope so.

 

 

[i] In each community I began with the contact information people had given me when we first met. Only a minority still lived at the same address or had the same phone number. Then I turned to phone books, social media, Google and other public-access online search engines, including USSearch that listed multiple address histories for many of the people. In each community, if my initial attempts to make contact failed, I then called on common acquaintances, knocked on doors of neighboring houses, and asked at local grocery stores, libraries and churches.

For more on this project:”The State(s) of the Affordable Care Act”

For more on housing struggles, take a look at this article about “Carly”