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:
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.
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.
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.
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.
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.
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:
What are the most important steps parents can take to help their children grow up healthy?
Unfortunately, parents tend to be blamed when their children grow up to have health problems, but most parents cannot control the economic and environmental factors that allow kids to grow up in good health.
I’d like to say: provide a healthy diet, make sure your kids get plenty of fresh air and exercise, keep them away from known pathogens. Yet it’s important to realize that many — perhaps even most — parents cannot afford a consistently healthy diet and/or are working too many hours in order to pay bills for them to have time to cook healthy meals everyday. Similarly, parents don’t control the levels of air pollution and water pollution that their kids are exposed to, and many parents raise children in neighborhoods in which there are no safe, green spaces for kids to play. And, given that most kids grow up in households where all adults need to work in order to get by, parents cannot avoid sending their kids to school when they are a bit sick.
I do think that most parents can restrict their kids’ access to the most nutritiously unsound foods (for example, sweet soft drinks, candy, processed meats) and can encourage kids to participate in gym and other school activities. I also think parents can and should make their voices heard in their communities and to politicians. If there is garbage on the streets in your neighborhood, bug the City to improve garbage pick-up. If nearby factories are shooting toxic chemicals into the environment, organize a protest.
Another piece of advice I’d give parents (and I am speaking as a mother of four as well as in my role as a sociology professor) is to help your kids find something that they love doing: drawing, singing, playing ball, doing math equations — whatever your kid likes. When we do things that we enjoy we feel better about ourselves and about the world, and that feeling leads us to want to make healthy choices. And something that nearly every American parent can and should do – vote, so that we can build policies that nurture kids’ health.
Do you believe children are prescribed too much medication in the US today?
Yes. I am especially concerned about the over-prescription of psychiatric medication in order to control the behavior of kids. While some kids are in fact deeply troubled and need medication, we shouldn’t be drugging kids for being “too” active or “too” disobedient. I also am concerned about the over-use of over-the-counter medication for colds and coughs. Oftentimes, what kids (and adults) need is rest and soup, but television ads encourage us to purchase quick fixes for ailments both major and minor.
Do you think the government should ensure all children have health insurance coverage?
Yes, absolutely. It is devastating for parents not to be able to take their kids to the doctor, and untreated illnesses cause kids to fall behind in school and in overall physical, emotional and cognitive development.
In evaluating the best states for children’s healthcare, what are the top 5 indicators?
Since S-CHIP is a federal program, there is not a huge amount of difference between the states in children’s access to care. However, there are enormous differences among the states in adults’ access to care. In states that expanded Medicaid eligibility under the ACA, most adults now have healthcare coverage. In those states that did not expand Medicaid, the numbers of uninsured adults have remained higher.
While all parents do their best to raise healthy kids, parents who are struggling with their own poor health have the cards stacked against them. So, I’d say the number one indicator at this time in the U.S. is the overall rate of health care coverage for all people — children and adults. Other factors that I see as important include well-resourced school nurse programs, strong immunization programs, strong oral health care programs, strong vision and hearing screening and programs.
The Republican plan to eliminate or change substantial portions of the Affordable Care Act is likely to have a disproportionately deleterious impact on women. This is why.
Women compared to men use more medical services and spend more on health care. Thus, any reduction in government support for health care will affect women more than men.
Women make more visits each year to primary care physicians than do men and are more likely than men to take at least one prescription drug on a daily basis. According to the Health Care Cost Institute, “In 2015, spending was $5,684 per woman and $4,581 per man. … From 2012 to 2015, the difference in spending between genders rose from $1,071 per capita to $1,103 per capita. Per capita spending for women was higher than for men on every type of service, except brand prescriptions.”
Given women’s higher healthcare needs, the ACA protected women by requiring all plans to meet a minimum level of coverage that includes a basic basket of necessary services. The Trump administration has announced that they will reduce the price of premiums so that Americans can have more “choice” to select less expensive insurance. Less expensive insurance typically covers less, which disproportionately hurts people who have need of more medical services. Lower premiums also may come with higher annual deductibles, meaning that people need to spend a large sum of money out-of-pocket before insurance will pay. Again, this places a particularly heavy burden on people who need more healthcare services.
In particular, women are more likely than men to suffer mental health challenges and women make substantially greater use of mental health services. Beginning in 2020, the GOP plan would eliminate the current requirement that Medicaid cover basic mental-health and addiction services. This roll back of mental health parity requirements will disproportionately hurt women.
Women are less able than men to afford health care.
According to the Department of Labor, women earn less than men. In 2014, for example, women who worked full time in wage and salary jobs had median usual weekly earnings of $719, which was 83 percent of men’s median weekly earnings ($871).
The Republican plan emphasizes tax credits and health savings accounts, both of which are irrelevant to low-income Americans.
According to the Department of Labor, women are more likely than men to be among the working poor. This is the group that has the most to lose with the Republican plan to decrease subsidies and eventually eliminate the Medicaid expansion.
The Republican approach to Medicaid disproportionately impacts women.
Nationally, women make up 56% of Medicaid recipients (in 2015). In states that did not expand Medicaid under the ACA, women are an even greater proportion of Medicaid recipients. In South Carolina, for example, 67% of Medicaid recipients are women. In Nebraska 66% are women. Thus, phasing out the Medicaid expansion will disproportionally hurt women.
The ethos of suspicion directed at Medicaid recipients will further hurt women. For example, the Republican plan requires states to re-determine Medicaid eligibilities “no less frequently than every six months.” Given that women bear the greater share of responsibility for arranging health care in American households, the need to frequently recertify eligibility will place an increased time burden on women to keep track and show evidence of eligibility.
Near elderly women are at particular risk of losing coverage under the Republican plan.
At the same time, many American women are married to men who are slightly or significantly older than they. This means that when the husband retires and becomes eligible for Medicare, the wife loses the “dependent” coverage she had while her husband was employed, but she herself will not yet be Medicare eligible.
This age group has particularly high healthcare needs that may become exacerbated while waiting for Medicare eligibility.
Under the A.C.A., plans can charge their oldest customers only three times the prices charged to the youngest ones. The Republican plan allows insurers to charge older customers five times as much as younger ones and gives states the option to set their own ratio.
The Republican plan singles out Planned Parenthood, prohibiting federal funding for Planned Parenthood for one year beginning with the enactment of the law. This will have a disproportionately negative impact on women.
Two and a half million women and men in the United States annually visit Planned Parenthood affiliate health centers for a variety of healthcare services. Most of these people are women who would stand to lose a wide range of primary healthcare services including, but not limited to, contraception.
Under the Republican plan, qualified health plans cannot include abortion coverage except for pregnancies that present life-threatening physical risks (not mental health risks) and pregnancies that resulted from rape or incest.
This provision not only reduces access to a needed medical procedure, but it also seems to require some sort of process for determining whether a pregnancy is life-threatening or confirming that a pregnancy is a result of rape or incest. This potentially could force women to prove (to the satisfaction of an insurance company) that she indeed was raped, and it certainly would delay performing the abortion – a delay that in and of itself presents health risks to women.
The Republican plan does allow insurance to pay to treat “any infection, injury, disease or disorder that has been caused or exacerbated by the performance of an abortion.” Since legal abortions performed by a qualified medical provider in a suitable medical setting are extremely safe, this provision seems to be set up for women who have resorted to “backstreet” abortions. While it is unlikely that the plan’s intent is to encourage illicit abortions, this provision seems to acknowledge that an increase in unsafe abortions may be a consequence of the plan.
This analysis was prepared by Susan Sered on March 8, 2017. Healthcare legislation currently is highly volatile with many changes proposed. Stay tuned – I will come back and update this analysis as more information becomes available.
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.
The first time I met Junie I mostly noticed the scars on her face. They were the result of a stove blowing up when she’d been left alone in the house at the age of three. As it turned out, that was only one in a long series of disasters she suffered throughout her life. Junie was the victim of sexual abuse and of trade in women’s bodies, of drug dealers who pushed crack through the streets and alleys of poor neighborhoods in the 1980s, and of the so-called war on drugs that utterly failed to get dangerous substances off the streets but that succeeded in destroying the lives of far too many African American men and women.
I had the honor of knowing Junie for close to ten years. There were times she’d drop out of sight, but we’d always reconnect and then she’d always thank me for not giving up on her. Each time we spoke it seemed like some new rotten thing had happened to her recently: She was arrested for stealing infant formula for a friend who just had a baby (she was indignant about this); she was kicked out of a homeless shelter for bringing in booze (she laughed about that one); she was turned down for housing for people who are HIV positive (she didn’t know why since she’d been HIV positive since the 1980s); she had a fight with the sister who had always been her most stable source of support (she understood her sister’s point of view: “she doesn’t like me hanging out [on the streets or using drugs]”); she was picked up on an old shoplifting charge by police doing random warrant checks on people socializing outside a homeless shelter, and spent two days in jail waiting for a judge to release her pending a court date (she took this in stride, seeing it pretty much par for the course.)
A few years before her death she and Joe, her beloved life partner, moved from Boston to the Midwestern town where Junie was born. They liked the slower pace of life, the lower rental prices (they were able to afford a small apartment, something that was completely out of reach for them in the Boston area), and the warm and and the welcoming church where Junie became a member of the choir.
She couldn’t however, get access to HIV care in the Midwestern town. When her viral load exploded and she developed full-blown AIDS she and Joe had to choose between housing in the Midwest and medical care in Boston. With her health rapidly deteriorating they returned to Boston where Junie eventually was placed in a nursing home twenty miles outside of the city. Three times a week she was brought into Boston for dialysis. In our last conversation, in late February 2016, I asked her if all of the travel back and forth was wearing her down. She told me that it was fine because dialysis appointments were the only time she and Joe could spend together; he had no way of getting to the nursing home to see her.
Last week Joe’s mother told me that Junie decided that she’d suffered enough and that “she passed” shortly after stopping dialysis. Devastated, Joe decided to turn himself and “clear up” an old warrant by serving a few months in prison.
Her death certificate likely reads “kidney failure due to complications of AIDS.” It should read “national failure due to complications of racism, poverty and violence against women.”
When I first met the people featured in the videos, all were stuck in spirals of deteriorating health, low-wage employment and medical debt, with no obvious way forward.
Taneila was a college student with diabetes who was supporting herself with a part-time job. When she turned eighteen she was no longer eligible to remain on her parents’ health insurance, and as a part-time worker she was not eligible for insurance from her employer.
Cindy, a young mother, had left the workforce to care full-time for her special needs baby. Her husband’s employer did not offer affordable insurance to “dependents.”
Laura was working in the hotel industry, notorious for not providing health insurance for employees.
Joyce was working on and off as a nursing home aide and her husband, Marcellus, was working full time in a warehouse. Neither had ever been offered insurance by an employer and both were experiencing serious health challenges as a result of the heavy lifting required in their jobs.
All five people had applied for Medicaid but earned too much to qualify for assistance under the old (pre-ACA) eligibility thresholds that limited coverage to low-income parents and severely disabled adults.
Post-ACA all now are insured.
Taneila now has a factory job that provides health insurance benefits. She wishes that when she had turned 18 she could have remained on her parents’ coverage like young people until age 26 now can under the ACA rules. If she had been able to stay on their insurance, she believes, she would have finished college and would now have a better job than working in the factory.
Cindy continues to cycle on and off coverage with her seasonal job in the local school system, but at least she has insurance for most of the year, which has allowed her to manage her chronic health challenge and maintain a good level of health.
Marcellus became sufficiently disabled (as a consequence of poor working conditions in his jobs and poor access to healthcare) to qualify for Social Security Disability. As a consequence, he is now insured through both Medicare and Medicaid.
The ACA was crafted to include federal funding for expanding Medicaid eligibility for more Americans. However, the Supreme Court ruled that Medicaid expansion must be optional for states. In Illinois, like in other states that chose to expand Medicaid, there have been substantial drops in the numbers of uninsured residents. Joyce and Laura, both of whom work part-time, are now covered by Medicaid. (In contrast, most of the people I caught up with in Texas, Mississippi, and Idaho—states that so far have declined the Medicaid expansion—are still uninsured.)
When we talk about the successes and shortcomings of the Affordable Care Act (ACA) – and health care in the U.S. in general – little attention is given to dental care.
While the ACA defines dental coverage as an essential benefit for those under 18, insurers aren’t required to offer dental coverage for adults. Medicare, the nation’s largest insurer, doesn’t cover routine dental work. And coverage for adults through Medicaid varies from state to state.
Oral health isn’t just about nice teeth. As the surgeon general noted in a 2000 report, oral health is intimately connected to general health and can be implicated in or exacerbate diabetes, heart disease and stroke, and complications during pregnancy.
The absence of comprehensive dental care exacts a toll on millions of Americans in terms of poor health, pain and the social stigma associated with bad teeth.
People desperately need dental care
In 2003 and 2004 (pre-Obamacare), I conducted a national study of uninsured Americans in southcentral Illinois, northern Idaho, the Mississippi delta, the Rio Grande Valley of Texas and in eastern Massachusetts.
I asked nearly 150 interviewees: “If President Bush were to declare universal health care for everyone starting tomorrow, what is the first problem you would take care of?” The most common answer by a landslide echoed this respondent’s: “I’ll be waiting outside the dentist’s office at 5:00 in the morning waiting for it to open.”
Many of the people I interviewed lived with untreated diabetes, asthma or even cancer, yet their oral health problems presented the greatest challenges to their quality of life.
Recently I returned to these communities to reinterview the people I’d met over a decade earlier. Very little has changed. While the majority of the people I interviewed now had health care coverage of some sort (for nearly 20 percent of them, it was as a consequence of becoming sufficiently disabled to be eligible for Social Security), very few had managed to secure dental coverage.
Then and now, people told me about visiting emergency rooms in hopes of alleviating pain or using addictive pain medications to make it through the day. People even told me that they had resorted to pulling out their own teeth.
Take Misty, for instance. When I met her 12 years ago in Mississippi, she was a “dirt poor” (her words) married mother of five, and she was living with diabetes, domestic violence and excruciating headaches. Despite all of these quite serious problems, she told me that she was more troubled by her bad teeth than by anything else. In fact, Misty told me that she’d had such bad toothaches that she pulled her own teeth. When I asked her how she can face the pain of pulling out her own teeth, she said:
[the infected tooth] hurts so bad… it’s a relief just to get it out of there.… I’ve gone two weeks with just being able to eat soup, because they are just so bad.
By 2016 Misty had left her abusive husband, moved to Arkansas and was accepted onto disability (SSI), which allowed her to get health care coverage through Medicaid. Still, however, she suffered because of her teeth.
It can be very hard to find dentists who accept Medicaid, and when Misty finally did, she had the rest of her teeth – 25 in all – pulled in one day.
Misty’s situation isn’t uncommon. I have met women and men of various ages who, like Misty, have pulled their own teeth. I’ve also met people who were able to get part of their dental needs taken care of during brief periods of Medicaid coverage but then were left with unfinished treatment when the coverage ended.
Insurance stops at the teeth
Even though the link between dental health and overall health is clear, insurance plans tend to ignore teeth.
As health insurance began to appear to appear in the U.S. – initially in the 1920s and then more widely during World War II and in the postwar era – dentistry wasn’t part of the standard package of covered services.
As the nation’s largest insurer, Medicare plays an important role in shaping health care coverage norms. Medicare does not cover dental care. Today, according to government estimates, 70 percent of seniors lack dental coverage.
Since Medicare doesn’t cover dental, Dr. David Kroll, senior program officer at the Robert Wood Johnson Foundation, argues that this “inertia spilled over into the ACA.”
Americans who purchase dental plans typically find that the plans aren’t cheap, and often don’t cover much beyond routine preventative care. Plans often require hefty copays for procedures beyond preventative care and no or very limited coverage for dentures, bridges or periodontic work.
The ACA provided for an expansion of Medicaid eligibility, though not all states accepted the offer of federal funding to expand Medicaid coverage. Even in the states that expanded Medicaid under the ACA, strict limits on oral health care remain for most low- and moderate-income Americans.
There is one bright spot: children’s dental coverage is a required benefit included on all ACA compliant plans, and Medicaid as well. According to national calculations of the Health Policy Institute and the American Dental Association, dental care utilization among Medicaid-enrolled children increased from 35.3 percent in 2005 to 48.3 percent in 2013.
Oral health isn’t just about nice teeth
In the absence of coherent oral health services, too many Americans end up like Gina, a young Idaho woman who holds her hand in front of her mouth while she talks so that no one will see her rotted teeth. She can’t even get a job as a telemarketer because she cannot speak distinctly enough to be hired.
Many Americans incorrectly assume that rotten teeth are the product of bad decision-making; if someone had just brushed and flossed then they’d have nice teeth. But routine dental care – think of the twice-yearly checkups that are routine for people with dental insurance – keeps teeth healthy and can catch problems when they are easy to treat.
The reality is that tooth decay signifies poverty in pernicious ways. Without expanding insurance to cover oral health, millions of Americans will continue to live with pain, stigma and the risks of systemic diseases that could be averted through an accessible and integrated system of dental care.
This post is part of a blog carnival. Mothers, activists, healthcare professionals and researchers around the world have come together to ask the UN Secretary General to recognize April 11 as the International Day for Maternal Health and Rights. Please join by using #IntlMHDay
Without rights to safety and bodily autonomy, women may be prevented from carrying and raising children whom they dearly wish to nurture.
Without laws guaranteeing women’s right to choose when or when not to be mothers, they may be forced to endure pregnancies that endanger their health and well-being.
Without rights to clean water and air, adequate nutrition and stable housing, women may enter pregnancy already in poor health. Women whose health is compromised are more likely to suffer miscarriages, complications during birth, low birth-weight babies, infections during the post-partum period, insufficient milk and heightened rates of maternal and child death.
Without rights to paid maternity leave women may not have the financial resources to properly nurse infants or allow their bodies to heal after childbirth. And without access to appropriate, respectful and high quality health care, mothers may become too weak, tired, discouraged or sick to advocate for their rights and for the rights of their children.
The U.S. Healthcare “Non”-system
Maternal health in the United States — to be blunt — is not good. The US ranks 61st in maternal health standards, by far the worst rank among all developed countries. And among 25 of the wealthiest capital cities surveyed around the world, Washington, D.C. has the highest infant mortality rate, with babies from the District’s poorest wards dying at much higher rates than the city’s already high average.
The United States lacks a system of universal health care access. Although the Affordable Care Act (Obamacare) has expanded Medicaid eligibility for women and men living in about half of the states, local governors and state legislatures in the other half of the country have refused federal money to expand Medicaid in their states. Especially in the states that did not expand Medicaid, women may find that they get healthcare coverage temporarily while they are pregnant. This means that women’s health may not be optimal going into the pregnancy; there may be delays in prenatal care because they cannot afford to pay for the doctor visit to “prove” pregnancy; or that their eligibility ends too soon after birth or miscarriage. This sort of policy conveys a clear message that women’s health is not important in and of itself, but only insofar as the woman’s body is a baby-carrier.
Kim (all names used in this post are pseudonyms), a young Illinois woman, worked hard to balance college and her job. Though she managed to support herself, she could not afford health insurance, “I also tried to apply to public aid for a medical card [Medicaid], but they were telling me I have to have a child. They said that’s what I need in order to get help through the system. They make me think that they’re stupid, because, I mean, you have people out here like me with no kids and trying to go to school and trying to do the right thing, and I think we should also be helped. I was like, ‘Child, are you serious?!’”
In quite a few states, the eligibility threshhold for Medicaid is more generous for children than for adults. In these states, babies and children may be are eligible for healthcare coverage even when their mothers are not.
Jamie, a married woman in her early thirties, was diagnosed with gestational diabetes during her first and only pregnancy. The Illinois doctor told her that gestational diabetes put her at risk of developing type 2 diabetes later on. Her son was born with special needs, so Jamie left her job to stay home and take care of him. She and her husband were able to arrange Medicaid coverage for their son, and her husband was covered through his job, but the household income was too high by a couple hundred dollars a month for Jamie to be eligible for Medicaid. However, their income was too low for them to afford to pay for her as a dependent on her husband’s insurance. Jamie did have a few good years during which she would get her blood sugar tested at free health fairs held at churches and parks. Today, she has full blown diabetes.
The absence of a comprehensive healthcare coverage system creates a dangerous roller coaster for women.
This often seems to happen in Mississippi, for Alisha’s tubes were tied shortly after she gave birth. The reason for this, Alisha explains, is that the doctor encouraged her to get her tubes tied while she was still entitled to Medicaid by virtue of the pregnancy. A few months later, when she began menstruating, she experienced profuse bleeding. By this time, however, her Medicaid eligibility was over and she was not able to afford a medical assessment or treatment. “It started with the heavy, heavy bleeding and the days lasted longer,” Alisa explains, “And then it started with it going longer and longer into periods being heavier and harder for me. Sometimes I just lie on the floor and push real hard until it’s time and then get up and get on the toilet and then the blood clot comes. So I have periods like that now.”
Mothering in the Shadow of the Correctional System
The health challenges faced by low and moderate income American women are exacerbated when they are caught in the correctional system. The United States has the highest incarceration rate in the world – and the gap between U.S. rates and those of the next most incarcerating countries are even higher for women than for men.
At this time, more than one million women are under the control of the United States correctional system. Most of these women are mothers of minor children and the majority of these mothers lived with their children before entering jail or prison.
According to the Center for Investigative Reporting, doctors sterilized as many as 148 women inmates in California prisons during the five-year period from 2006 to 2010. Women can be shackled during labor or delivery in most U.S. states. Incarcerated women struggle to obtain routine prenatal services, and the majority of newborns are separated from their incarcerated mothers immediately following birth.
Kristin from Massachusetts went to prison for the first and only time in her life immediately after giving birth to her second child. (The state kindly allowed her to wait to start her sentence until the baby was born.) At her request, her married brother and his wife took custody of her eight year old son and her newborn baby. Shortly afterwards, the brother and his wife found it difficult to cope with behavioral problems the older boy began to exhibit when his mother was taken away. At Kristin’s initiative, the department of Social Service (DSS) placed him with foster parents who seemed well able to care for the boy. A year later her son was placed with a single man in his forties who has asked to adopt the boy. Kristin is suspicious of his motives in wanting to adopt a ten year old with special needs and cannot understand why the Court feels that he is a preferable parent to her – even after she finished serving her sentence for a non-violent crime. There is no record, evidence or even accusation that she ever abused or neglected her children, and the boy desperately wants to come home with his mother.
With all of this going on, Kristin found out that she was pregnant. This was an unplanned pregnancy, for at 41 years of age she thought that her childbearing years were over.
By the time, Kristin was able to see a doctor, who showed her ultrasound images of the fetus, SHE felt that she could not have an abortion. The various lawyers and social workers involved in her custody cases are outraged at her decision to continue the pregnancy, seeing it as “irresponsible”. Caseworkers have threatened that by going through with this pregnancy rather than having an abortion, she will “lose any chance” of regaining custody of her other children.
Kristin’s loss is not a rare event. Across the country in Idaho, a friend watched Child Protective Services rip a baby from the arms of a woman who had just given birth. This woman’s child was taken from her because her drug use was seen as a danger to her children. “She asked for help,” her friend explains, “She failed her drug first test, but passed every one since. She is clean and committed to staying that way.” To make matters worse, CPS deemed the woman’s family members as unacceptable to take the child because they do not live in the same state. She has no money for a decent attorney and is looking at a hard road ahead. “Today I will watch them rip her three year old son from her arms too,” her friend says, “The baby was born with no drugs in the system. A perfect healthy 7 pound 3 ounces bundle of love. I’m sad and mad today.”
I share both the sadness and the anger. If there were any evidence that removing children from mothers like Kristin actually benefited children or mothers, I might feel differently. But children put into state foster care systems tend not to do well: they typically move from placement to placement, each time switching schools, doctors and caregivers. They are more likely than other American children to be overmedicated with cocktails of psychotropic prescription medication. And while some mothers may respond by trying as hard as they can to stay off drugs and to jump through every hoop demanded by every caseworker and judge involved in the case, some mothers become so despondent that, as one mother who lost her children told me, “After that happened I just gave up. When I had my kids, I admit, I sometimes used [drugs] but I always kept it under control – just small amounts on a Friday night, never in front of them, never got so high that I didn’t take care of them. But once they were gone I was off and running. There was no reason to try [to refrain from drug use] anymore. I stopped taking care of myself. I never cried so much in my life.”
While the brief stories presented in this post have to do with women whose mothering experiences are particularly harsh, once we understand the political, legal and economic contexts of mothering in the United States, we understand that these personal experiences are shaped by the same social forces that shape maternal health for all women.
Around the world maternal health is constrained and encouraged by both formal and informal social institutions. In the United States, mothering increasingly has become a matter of legislative policy and judicial control. The lack of universal healthcare coverage, narrowly limited coverage for pregnant women, abortion restrictions, mass incarceration, prosecution of women for prenatal harm, removal of children from mothers who use drugs, welfare (TANF) limitations on childbearing, and the authority of family courts in child custody decisions are manifestations of a broad cultural consensus that the State has legitimate powers to decide what constitutes maternal health, who is entitled to health-enhancing conditions and services, and who counts as a good enough mother.
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Click here to learn more about how to get involved in the movement to urge the UN to declare April 11 as International Day for Maternal Health and Rights.
If you live in Massachusetts, let your legislators know that you SUPPORT HB 1382: An Act to Provide Community-based Sentencing Alternatives to for Primary Caregivers of Dependent Children Convicted of Non-violent Offenses. If you live in other states or countries, find out about — or initiate — similar legislative efforts.
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.
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.
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.
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
The emergence and spread of the Zika virus is worrisome on many levels: the impact of global warming on the spread of infectious and mosquito-borne diseases (see “Getting Dumped On: Snowmaggedon, Women’s Health and Human Rights“); indiscriminate aerial spraying of poisonous chemicals — especially in poor regions — whether well-intended or not; and the reality that the poorest families in Brazil and other countries disproportionately bear the burdens of global warming and are disproportionately exposed to Zika virus due to living in crowded neighborhoods, reliance on public water pumps that often are surrounded by pools of standing water, and lack of adequate public health resources.
A related set of worries are products of structural gender inequalities: prohibitions on abortion in countries and US states at the same time as women are being warned not to become pregnant because of the presence of the Zika virus (see “Pregnant Bodies as Public Property“); the power of ‘rape cultures’ in which women may not be able to control access to their own sexuality and fertility (see “Fighting Rape Culture: Real Tips“); and a problematic history of public responses to viruses (such as HIV-AIDS) that may be spread through sexual contact, especially when the virus initially impacts disenfranchised or stigmatized groups.
In addition to alarm regarding the vectors of spread of the virus, there is cause for concern for the well-being of families affected by Zika virus. Here in the United States, Zika virus-bearing mosquitoes have shown up in Florida and other southern US states where many people are unable to access appropriate medical care because their state governments have refused to expand Medicaid under the Affordable Care Act (see “The State(s) of the Affordable Care Act“). Shocked and saddened by the pictures we are seeing in the press of babies born with microcephaly, the US’s continued refusal to sign the International Convention on the Rights of Peoples with Disabilities (see “Disabled Rights“) seems particularly indefensible at this time.
In light of the recent outbreak of the Zika virus in Latin America and the Caribbean, the Women’s Global Network for Reproductive Rights (WGNRR) and the Latin American and Caribbean Women’s Health Network (LACWHN) join the voices of our feminist and women’s rights partners in admonishing regional governments’ limited public health advisories for women. In particular we denounce the calls of countries such as Colombia, Jamaica, Ecuador, and El Salvador, advising women to delay pregnancy until the virus is eradicated, and particularly the call of El Salvador for women to avoid becoming pregnant for a full two years.
Governments must recognize that when combatting the Zika virus, any public health strategy that does not have human rights, including sexual and reproductive health and rights (SRHR) at its core, will be limited in its impact and sustainability, while also creating massive grounds for human rights violations.
As a region, Latin America and the Caribbean is characterized by: high rates of unplanned pregnancy, where upwards of 56% of pregnancies are unintended; high levels of sexual violence; limited access to contraceptives and sexual and reproductive health services; and restrictive laws on abortion, where in some cases such as El Salvador, abortion is prohibited under any circumstances and women are routinely persecuted and even criminalized on suspicion of having abortion. Moreover, women who are young, from remote or low-income communities, and/or living in other vulnerable situations, disproportionately face multiple barriers when it comes to exercising meaningful decision-making power and control over their sexual and reproductive lives. In such a context, calls for women to simply delay or avoid pregnancy are not only unrealistic but irresponsible and negligent.
The rapid spread of the Zika virus and its strong association with marked increases in microcephaly and other neurological abnormalities is in many ways new terrain, with new elements continually coming to light, demonstrating a clear need for more research. This uncertainty makes it all the more imperative for governments to undertake from the beginning a holistic, sustainable, and rights-based approach to eradicating the virus and mitigating its effects. Anything less is careless and counter to governments’ human rights commitments under regional and international human rights law.
We thus urge the governments of affected countries both in Latin America and the Caribbean as well as other regions worldwide to undertake a rights-based, reproductive justice, and sustainable development approach towards the Zika virus and any other emerging health issue. Such an approach must be holistic, while recognizing gender equality and women and girls’ empowerment as a cross-cutting priority, in keeping with governments’ agreements and commitments under the 2030 Agenda.
In practice, this approach to combatting the Zika virus must include:
Ensuring universal access to a full range of high-quality, voluntary, and user-friendly contraceptive methods, including barrier methods such as female and male condoms, and emergency contraception, as well as comprehensive SRH information and services, including antenatal services to enable early detection of microcephaly.
Targeting both men and women in public health awareness campaigns, especially in light of recent evidence that Zika may be sexually transmitted, recognizing that the responsibility for safer sex methods falls on both men and women and cannot be shouldered by women alone.
Decriminalizing abortion, and removing all legal and implementation barriers to expand and ensure access to safe, comprehensive, free and high-quality procedures for pregnancy termination, free of requirements for marital or parental consent. As has been flagged by partners, in the context of the many uncertainties and increasing public fears surrounding the Zika virus, calling on women to simply not become pregnant when access to safe abortion is limited or even completely criminalized will inevitably risk driving up rates of unsafe abortion, and ensuing maternal mortality and morbidity. Moreover, restrictive and punitive abortion laws that force a woman to carry an unwanted pregnancy violate women’s right to be free from inhuman and cruel treatment, as noted by Human Rights Bodies.
Supporting pregnant women in Zika-affected countries who decide to remain pregnant to be able to carry the pregnancy safely to term, including access to comprehensive pregnancy, safe delivery, pre- and post-partum care and neo-natal care services; as well as the provision of special needs therapy, health and educational services as needed for children with microcephaly.
Systemic policy and programme changes that account for the intersections between climate change and SRHR.
Immediate implementation of related recommendations under the Montevideo Consensus as well as targets under the Sustainable Development Goals of the 2030 Agenda, particularly those related to health and gender equality, in order undertake effective and holistic protection measures and help curb the spread of the virus.