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(Thank you to Lois Ahrens for bringing the pink handcuffs to my attention.)

Each October, as national breast cancer month rolls around, I find myself fluctuating between pink-nausea and pink-rage. The pink ribbon extravaganza, a month-long consumer fest that turns women’s suffering into cold hard cash makes the absence of a national commitment to identifying and eliminating the environmental causes of breast cancer seem that much worse. The sanitized cuteness of pink-ribboned teddy bears makes the slash and burn treatments of the bio-medical cancer industry feel all the more painful. And the pink-painted messages praising “strength” and “optimism” reinforce the “holistic sickening” at the core of many of the complimentary and alternative healing modalities that “explain” breast cancer in terms of poor lifestyle choices, suppressed anger, or denial of one’s true femininity.

This year I’ve collected a few of the new (or at least new to me) egregious efforts to commodify, to normalize, to exploit — and to “cutefy” — breast cancer. Click here and here for more serious analyses. And as always, to learn more about “pinkwashing” and to support the work of Breast Cancer Action, click here.


As you can see in the feature photo, the pinkwashing Olympics have their new champion: the police department of Greenfield, Massachusetts announced on Facebook that for the month of October, they’ll be using pink handcuffs. Officers will also sport pins reading “Arrest Breast Cancer.” Because there’s no problem you can’t solve that way.

The news of this very well-intentioned, probably, gesture comes via CBS Boston and also the department’s own exuberant press release:

October is National Breast Cancer Awareness month. While most people are aware of breast cancer, many forget to take the steps to have a plan to detect the disease in its early stages and encourage others to do the same.

Many of our community members, including some of our own friends and family members, have been affected by breast or other types of cancer.

Officers of the Greenfield Police Department have “gone pink” in order to raise awareness for the disease! All of our officers have changed their collar pins, which were blue and white state seals to pink and white pins which states “ARREST BREAST CANCER – UNLOCK THE CURE” surrounding a pink ribbon and a pair of handcuffs. Some of our officers have even replaced their on duty silver handcuffs with pink ones and will be using them during the course of their work day.

Help us ARREST BREAST CANCER by spreading the word and by making your own early detection plan.

 

Remember: when placing a suspect in a light chokehold or frisking them against a vehicle, always ask if they’ve performed a monthly breast self-exam. There’s no awareness like the kind that takes hold in the back of a squad car.

In this era of stop and frisk, rising rates of incarceration among women and continued sexual abuse of women in prison it’s hard to get excited about a pink police car. “In 2006, a Department of Justice (DOJ) study found that women in prison are at significantly greater risk for cancer than their male counterparts. Out of every 10,000 incarcerated women, 831 had cancer, compared to 108 per 10,000 men.” According to the Department of Justice there are over 1,000 incarcerated women who either have or have had breast cancer. To learn more about  the suffering of “breast cancer behind bars” click here.

Pinkwashing has also expanded in the usual commercial way:

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(Image courtesy of the Shultz Shoes Website.)

Just what every woman needs to stay healthy: Pink stilettos. Perhaps the message is: Don’t worry about dying of breast cancer when you can kill yourself running for the train in pretty pink shoes.

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(Image courtesy of the Hard Rock Hotel Website.)

This year the Hard Rock Hotels are offering “Pink Rooms” with pink bed sheets and an option to purchase pink bathrobes. The activists among us will be relieved to know that we can stop organizing, lobbying, researching and lecturing. All we need to do to eliminate breast cancer is “Get into bed” and “relax for the cause.”  And in case you’re more of a “party for the cause” than a “relax for the cause” kind of gal, Hard Rock Hotels have you covered as well. Who knew that pink margaritas prevent (or is it cure?) breast cancer?

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Pink ribbon and other cause marketing can mask conflicts of interest, like when companies promote the idea of cancer research but also manufacture ,disseminate, or sell products that contain toxic or carcinogenic ingredients. I’ve recently seen dry cleaning companies jumping on the Pinktober bandwagon:

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(Image Courtesy of Westportnow.com)

What this and similar ads leave out is that PERC, the solvent used in most dry-cleaning, is a known carcinogen.

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(Image Courtesy of Glamour.com)

Recent studies also show the harmful effects of working in a nail salon surrounded by fumes from chemicals in nail polish and yet companies are selling nail polish to “promote breast cancer awareness.”

And finally, to take away the sour tastes in our mouths (whether caused by chemo or by pinkwashing): Nothing promotes the health and wellness of women quite like sugar filled candies with cute little pink ribbons all over them.

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(Image courtesy of orientaltrading.com)

 

 


We Can Do Better

While spending on breast cancer detection and treatment continues to increase, funding for prevention – for learning about the causes of breast cancer – is far less marketable. In past years my home state, the Massachusetts legislature failed to fund research on potential carcinogenic impacts of chemical exposure despite clear findings that there are specific communities in Massachusetts with particularly high rates of breast cancer.

As for me, I’ll skip the pink bathrobes, candy, nail polish and (hopefully) police cars, and spend my money on real research into breast cancer prevention. For more on the Silent Spring Institute click here.

Thank you to Robin Yang and Ashely Rose Difraia for help with this post.

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During the first week of August 2015, newspapers reported that the White House is drafting an executive order requiring federal contractors to provide their employees with at least seven days of paid leave per year for illness or to care for family members. The notion that workers are are flesh-and-blood human beings who sometimes get sick, sometimes need to care for family members who are sick, and often cannot absorb the loss of salary while they are sick should be pretty self-evident. And, one would assume, acknowledgment of basic human rights should be sufficient reason to require employers to provide their workers with at least some paid sick leave. Yet, within days of reports of this seemingly modest policy move, industry leaders have made it clear that they will oppose this executive order in court; that they will do their best to dilute it’s provisions; and they will do their best to ensure that it applies to as few workers as possible.

Fortunately, despite harumphing out of Washington that paid sick leave would kill job growth, interfere with the free market and turn American workers into sniveling babies, a number of states have gone ahead and passed paid sick leave ballots or legislation. I’ve re-posted here an essay on the critical importance of paid sick leave that I wrote right after the 2014 elections. Continue reading

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

 

 

Candidate Charlie Baker; photo by Matt West

After running on a campaign of new and smart ways to reduce government spending, Massachusetts Governor Charlie Baker (R) has proposed budget cuts for fiscal year 2016 that are neither new nor smart — going after the low-hanging fruit of government funded Medicaid (MassHealth) for the Commonwealth’s poorest, sickest and most vulnerable residents. Most of the proposed savings to MassHealth in Gov. Baker’s plan are merely a matter of bookkeeping – shifting costs from fiscal year 2016 to fiscal 2017. But the Administration also aims to reduce spending by requiring over one million residents enrolled in MassHealth to prove that they are still eligible. Though the Administration has not provided an estimate of how many ineligible people are enrolled, Baker’s budget team estimates that this move will save the Commonwealth $210 million.

The immediate plan is for the Commonwealth to contact 1.2 million people who were automatically re-enrolled in MassHealth when the Health Connector (‘Exchange’) website experienced technical failures in 2013. Each of these people will receive two letters asking them to reconfirm their eligibility. After 60 days those who do not respond will lose coverage. That may not sound unreasonable, but as a sociologist who works with low income women, I suspect this plan presents disproportionate hardships for residents who do not have permanent addresses or who struggle with understanding government forms and with gathering the required documentation; that is, the people who most need consistent healthcare coverage. Individuals who lose eligibility will be allowed to re-certify in the future, but the immediate effect will be disrupted care and an uptick in expensive emergency department usage.

The scanty information released by Governor Baker’s office indicates three categories of potentially ineligible people who would be eliminated from the MassHealth rolls. The most straightforward are people who still are on MassHealth plans but have moved out of state and receive coverage elsewhere. These people, however, would not seem to account for much spending given that they have other insurance where they actually live so are unlikely to use MassHealth benefits. The second category is people who have had a change in income sufficient to place them over the eligibility threshold. Given the absence of a meaningful economic recovery for low wage workers in Massachusetts, this category likely consists of individuals and families whose current earnings push them marginally over the eligibility line. Switching these people from MassHealth to the heavily subsidized insurance policies that they are eligible for through the Health Connector is unlikely to make much of a difference in the budget.

A third category – people who are purposely cheating or “working the system” — has not been explicitly singled out in statements from the Governor’s office. But given 2010 gubernatorial candidate Charlie Baker’s fake electronic benefit cards that said: “Deval Patrick’s Massachusetts EBT Welfare Card. Swipe me for booze, cash, cigarettes, and/or lottery tickets at taxpayers’ expense,” weeding out Medicaid cheaters certainly lurks behind the call for re-certification. Again, we have no information regarding numbers, but we do know that hunts for fraudulent welfare claims consistently turn up very little cheating and thus very little cost-saving. Last year, for example, Maine Gov. Paul LePage (R) released data intending to prove widespread welfare abuse but in fact showed that 99% of all welfare benefit transactions were legitimate and legal.

The re-certification process in and of itself will be costly. If we calculate (modestly) 15 minutes for a government worker to process a straightforward re-certification, the 1.2 million re-certifications will take approximately 300,000 hours. And if we assume (modestly) a salary of $15 / hour for the workers who process re-certifications, the bureaucratic cost will come to 4.5 million dollars – a substantial chunk of what the Administration is looking to cut from the MassHealth budget and money that surely could be spent in a manner more conducive to protecting the health of Massachusetts’ residents.

These numbers are just an estimate, and I assume the Governor’s staff has more accurate numbers. But even if I’m off by 50%, we’re still looking at a cost cutting plan that is likely to cost the Commonwealth a great deal both in terms of salaries and in terms of health.

For more on the larger picture of  health care coverage click:  Health Insurance Roulette: The House Always Wins

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feature image via Cody Glenn, The Daily Journal

Francesca, a woman I have come to know during the past seven years, has tried hard to rebuild her life after fleeing an abusive marriage, overuse of pain medication, homelessness and a stint in prison. She popped into my mind this week when I read an article about Maria Fernandez who died of exhaustion. Working more than eighty hours a week at minimum wage jobs in fast food chains, she sat down in her car to take a nap between shifts. A gas container tipped over and Maria never woke up.

With a prison record, Francesca can barely find one job, let alone the four that Maria juggled. But she certainly understands what Maria was going through at Dunkin Donuts. A couple of years ago Francesca was hired at a Boston-area Dunkin Donuts where she worked erratic, long shifts at the whim of the manager. She rarely knew ahead of time when she’d be called into work, or for how many hours. After a few weeks she found herself in pain — bone spurs in her foot had been exacerbated by the long hours standing on her feet. Her manager told her that if she took off time or reduced her shifts he would let her go. Fortunate to be a recipient of Massachusetts’ generous health insurance coverage, she went to her doctor who gave her an orthopedic boot to wear at work. Unfortunately, the boot caused her to trip at work and she was fired on the spot.

Paid Sick Leave

In a mid-term election cycle that resulted in few reasons for young, sick, poor or vulnerable Americans to look forward to positive changes in their circumstances, there was at least one bright light. Massachusetts voters (yes, the same folks who voted in Republican Charlie Baker for governor) approved a ballot measure in support of the country’s most robust requirements for providing paid sick leave to workers. The new Massachusetts law entitles people to earn up to 40 hours of paid sick time each year if they work for businesses with 11 or more employees; staff at smaller companies would earn 40 hours of annual unpaid sick time. Sick leave could also be used to care for a sick child, spouse, or parent.

With that vote, Massachusetts joins two other states (California and Connecticut) and about a dozen municipalities. Paid sick time questions were also on the ballot in three cities in this election, and passed in all three.

It’s not hard to argue that paid sick leave is good for everyone, not just for Francesca or Maria. For parents, it means being able to take off from work to care for sick children. For consumers, it means less likelihood that the people serving your meal, ringing up your groceries or checking you in at the doctors’ office will spread germs by coming into work sick. It also means less likelihood that someone doped up on Nyquil will be at the wheel of a car or truck. Or that construction workers, bank tellers and security guards will make the kinds of illness-induced errors that can lead to roofs collapsing, money going astray, or weapons making it into public institutions. But it doesn’t end there. Paid sick leave is also good for employers: Productivity and profitability go down when workers are forced to come to work when they are sick. One study on the impact of illness on productivity estimates that businesses lose twice as much money to workers who show up at work while sick then when workers stay home due to an illness.

Tip of the Iceberg

But there are more macro reasons that the four sick leave ballot votes are a cause for elation. On a deep level, paid sick leave pushes back against a corporate culture in which workers, and especially low-wage workers, increasingly are treated as replaceable cogs in the money-making wheel.

In the best of all possible worlds (actually, in the world that the labor movements of the early twentieth century fought hard to create), employers and employees would collaborate in creating a safe working environment, a first rate product, and profits for the company and livable wages and solid benefits for the employees. In that world, the health and safety of the employee would be seen as serving not only the moral but also the financial good of the employer. Employers would understand that they could not prosper without the dedicated services of their employees. They would nurture that dedication through an occupational culture of respect and fairness, and they would do everything in their power to hold onto their employees’ services. These employers would know that it is in everyone’s interest to ensure that the workplace environment minimizes the risk of injury and thus minimizes lost workdays, and that in the case of accidents or illness employees receive the best possible medical treatment so that their return to work is expedited. These employers would also respect that their workers have lives outside of the factory or store or restaurant or office. They would understand that workers, like themselves, are also human beings living in the frail bodies. And workers, like employers, are embedded in the family and social networks of mutual obligation that provide the truest safety net when we – as all humans do – are born, give birth, become ill, age and die.

This scenario is rooted in an idealized business ethos of respect that recognizes the mutual dependency between owners and workers, and it is actualized through specific health and safety programs that employers support on both moral and business principles. Employers know that it is economically inefficient to deal with frequent turnover in their workforce so they want employees to work for them for a good long time, to improve their job skills, and to develop company loyalty. To some extent, it is irrelevant whether this goal is driven by pure altruism, by the profit motive, or by a combination of the two. Whatever the motive, in our ideal world, it wouldn’t be such a bad idea to link health care to employment or for workers to depend upon their employers to compensate them for work related injuries.

Unfortunately for American workers, however, that ideal world does not exist (at least, not outside of occasional nostalgic TV sitcoms). The current American work world is highly mobile and transient; many of the largest employers in, for example, the fast food industry, seek ways to structure employment so that workers are easily interchangeable; multi-national conglomerates neither feel loyalty towards their employees nor expect their employees to feel loyalty towards them; small businesses go under faster than they get started; and manufacturing and other business associations spend billions of dollars lobbying Congress and state legislatures to limit laws requiring and enforcing workplace safety standards.

In the real world, employees and employers often experience their relationship as more adversarial than cooperative. Rather than collaborate on a mutually beneficial social contract that balances the well being of workers with profits and productivity, employers increasingly have chosen to pursue immediate profits. Employers frequently view living wages, strong worker benefits, and safe working conditions as coming at the expense of profits. Investing in the health of employees often is seen as superfluous in an economic climate in which the growing caste of the working poor can be hired on a temporary or contingent basis, and in which plants and factories can be moved to South America or Asia — places where employers need not bother with things like paid sick leave, health insurance or worker’s compensation, labor unions, environmental regulations, or child labor laws.

What’s Next?

Successfully passing paid sick leave ballot questions in a few states and cities cannot reverse decades of policies that created the work environments in which Francesca and Maria live, and die. But it is a meaningful move pragmatically for hundreds of thousands of people, and a meaningful move symbolically in terms of collective recognition of basic human rights of workers.

So, as I write this I can, for a few minutes at least, feel a bit better about the 2014 mid-term elections. That is, until I remember that Republican leaders have made clear that one of their highest priorities will be the repeal of Obamacare, which while far too watered down for my own tastes, does require employers of large companies to offer health insurance to their employees.

You can read more about these issues in Uninsured in America: Life and Death in the Land of Opportunity by Susan Sered and Rushika Fernandopulle.

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A newer version of this post (with more great photos) can be read here. And click here to get to the Bitch podcast “Popaganda Episode: Liberal Problems in which I read part of this post.

It’s October – the leaves are turning yellow, porch ornaments are coming up pumpkin orange, the first frost is sparkling silver, and everywhere I turn the sight of pink ribbons assaults my eyes and affronts my sensibilities. The annual pink ribbon extravaganza, surely one of the most successful marketing campaigns in history, has millions of Americans walking, running, racing and selling merchandise “for the cure.” Having spent the first half of my career studying religious rituals, I can’t help but think that many of the ribbon bearers see their little scraps of pink as an amulet or a charm, a means of warding off an enemy over whom one feels impotent. If we just wear or sell enough pink ribbons during the month of October, we hope or we bargain with the cancer gods, then maybe we’ll be safe from breast cancer for the coming year.

10well_ribbon-blogSpanMaybe I’m a cynic, or an agnostic, but as a means of averting breast cancer I’d rather put my money on cleaning up toxic chemicals from the environment than on adding a bunch of pink ribbons to our November trash piles or on painting pink ribbons on football fields while the NFL allows known rapists and batterers to play in the league.

Winners and Losers

When my mother became ill with and eventually died of breast cancer in 1971, no one talked about it – not even her close friends were present to offer aid or comfort. Yet, today, as we paint the town pink, I am concerned that we have come to see breast cancer as a relatively normal part of the female life course: puberty, pregnancy and childbirth, followed by menopause and breast cancer. Pushing against this cultural tide, I feel a need to yell: Breast cancer is not normal; nor is it pinkly feminine or cute. The rise in rates of breast cancer over the past century is a palpable sign that something is wrong with our world.

America loves winners, and we have come to regard women who are diagnosed with but do not die from breast cancer as heroic battlers. Those women who die are hidden, lying somewhere outside of the victory circle, “victims” in a culture that at best pities and at worst blames victims for their own misfortunes. It feels absurd to have to say this, but it needs to be said: Breast cancer can’t be cured by the optimism or will power or athleticism or fighting spirits or strength of character of women who are afflicted with the disease. Breast cancer should not be treated as a challenge or as a measure of one’s moral fiber.

And it should never, ever be treated as a commodity.

Big Bucks

Gayle A. Sulik draws attention to some disturbing implications of the ubiquitous pink ribbon. First, pink ribbon marketing, like all “cause marketing,” primarily benefits the company, not the charity or cause. Second, as a result of cause marketing, people actually give less to charities. And third, pink ribbon and other cause marketing can mask conflicts of interest, like when companies promote the idea of cancer research but also manufacture, disseminate, or sell products that contain toxic or carcinogenic ingredients.

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Over the past few years the failure of the pink ribbon movement was brought home to many of us when the Susan G. Komen for the Cure foundation, the most visible promoter of pink racing for the cure, announced that it would no longer fund breast cancer screenings at Planned Parenthood, the health care home for millions of young and low-wage women. This decision, believed to reflect the Komen’s Foundations’ capitulation to anti-choice advocates, was reversed when donations to the organization plummeted in response.

 

Where is the Evidence?

Victory laps in races for the cure, together with the ubiquitous pink ribbons, may lead people to believe that far greater strides have been made in preventing and treating breast cancer than have actually been made. In a 2014 article published in the New England Journal of Medicine, Nikola Biller-Andorno, M.D., Ph.D. and Peter Jüni, M.D. report that data show no evidence that routine mammography screening of women at average risk saves lives. A high-quality study made public by the Swiss Medical Board, “acknowledged that systematic mammography screening might prevent about one death attributed to breast cancer for every 1000 women screened, even though there was no evidence to suggest that overall mortality was affected.”

The NEJM article also cites research showing that many American women overestimate their personal risk of breast cancer and the benefits of mammograms. In a study of U.S. women’s perceptions, “717 of 1003 women (71.5%) said they believed that mammography reduced the risk of breast-cancer deaths by at least half.” Exacerbating the dangers, as a major Canadian study discovered, 21.9% of breast cancers found through mammography screening represented over-diagnoses. In other words, thousands of women each year undergo surgery, radiation and chemotherapy for non-life threatening cancers.

Breast Cancer Action, a national non-profit organization calling for transparency in breast cancer research, treatment and education, has these harsh words to say: “While corporations [such as manufacturers of mammography equipment] have made billions off the disease, progress in breast cancer treatment, prevention, survival, and inequities has not been forthcoming. Three million women in the U.S. are living with breast cancer. Up to one-third of all breast cancers will metastasize, even when found in the early stages. Black women are still 40% more likely to die of breast cancer than white women. And each year, 40,000 women die of breast cancer.”

We Can Do Better

PieChartWhile spending on breast cancer detection and treatment continues to increase, funding for prevention – for learning about the causes of breast cancer – is far less marketable. This year, in my home state, the Massachusetts legislature failed to fund research on potential carcinogenic impacts of chemical exposure despite clear findings that there are specific communities in Massachusetts with particularly high rates of breast cancer. According to reports, “The Massachusetts Senate [2015] budget … did not include a $500,000 request to fund water quality and public health research by Silent Spring Institute.  The Massachusetts Breast Cancer Coalition requested this funding on behalf of its sister organization, Silent Spring Institute to study exposure to toxic chemicals in drinking water and homes in Central Massachusetts and on Cape Cod. Earlier this month, the House of Representatives failed to approve funding for Silent Spring Institute in the FY 2015 House budget. This is the second year in a row that budget requests for important water quality research in both the House and Senate have been excluded.”

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Today, when I walked past the Massachusetts State House on my way to work and saw pink ribbons everywhere, women’s health pioneer Barbara Ehrenreich’s words came to mind. Writing about her own experiences with breast cancer, Ehrenreich wrote, “What sustained me through the ‘treatments’ is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with say, the last smug health insurance operator, strangled with the last pink ribbon.”

In honor and memory of my mother, Bernice C. Starr, let me say “Amen.”

 

Published on CommonDreams, Sept. 17, 2014

A fact sheet released on Tuesday by the White House outlines an expanded government commitment in response to the Ebola epidemic in West Africa. “[T]he humanitarian crisis there is a top national security priority for the United States.  In order to contain and combat it, we are partnering with the United Nations and other international partners to help the Governments of Guinea, Liberia, Sierra Leone, Nigeria, and Senegal respond just as we fortify our defenses at home.”  The President’s plan includes the deployment of 3,000 troops to the region. “The United States will leverage the unique capabilities of the U.S. military and broader uniformed services to help bring the epidemic under control. These efforts will entail command and control, logistics expertise, training, and engineering support.”

The President’s plan was quickly lauded with headlines announcing that the US has declared war on Ebola, and that the US plans to send troops to tackle Ebola .

I am, like most everyone else, pleased that the United States has finally, if belatedly, decided to send substantial resources to assist the impoverished communities and nations bearing the brunt of this infectious disease. Yet I can’t help but be put off by the militarization of the response.

The newly declared “war on Ebola” troubles me on several levels. First, I’m not convinced that sending uniformed troops to regions that have suffered excruciating armed conflicts over the past decades is a move designed to inspire trust or hope among the local population. One wonders how these troops will be used: Will they don shields and helmets while forcing residents of poor neighborhoods to stay put or to move to mobile treatment centers?  Will they carry weapons? Will the appearance of foreign soldiers frighten urban residents into fleeing into the countryside?

Turning our attention inward, I am concerned that we come to rely on our military as the only governmental agency capable of responding to any sort of crisis. Do we not have the resources within national health agencies to respond to major health crises?

Military organizations and military culture are not the best way to respond to human suffering. 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. Over the past decades, our disastrous national campaign against drugs has been framed as the “war on drugs.” This set of racially charged policies, more aptly described as a “war on drug users,” and has led to local police departments being armed with military equipment (including tanks) and, tragically, to the highest rate of incarceration in the world.

While we might find comfort in the belief that with sufficient technology we can conquer any foe, the world is far more complicated than that. Even if military and medical might could eliminate every single trace of the virus in West Africa, the conditions that made the region vulnerable to the rapid spread of a new infectious disease remain in place. These conditions include deforestation and environmental degradation, rapid movements of populations into overcrowded cities, and yes – wars and other political operations that eat up resources that in other circumstances could go into building a viable and stable public health infrastructure.

secret-serum-ZMapp

An earlier version of this post entitled “Ebola, Monsanto and Me” contained several factual errors. I thank the dedicated readers for pointing them out. Please be sure to use this version for circulation and re-posting.

During the first months of the growing Ebola outbreak in West Africa, other than on NPR it was hard to find any American thoughtful media coverage of this historic public health tragedy. In mid-July I attributed this apathy to several factors: the “otherness” of Africans; a sense that “it couldn’t happen here;” compassion fatigue, especially regarding Africa and Africans; and our own American disinterest in developing and supporting public health infrastructures.  Still today, this kind of “reporting” goes uncritiqued in the mainstream media: “Apparently, the Ebola virus now enveloping three West African nations wouldn’t have developed into an outbreak if not for the people’s ignorance and belief in witchcraft.” I’m hard-put deciding what appalls me most: The not-so-thinly-veiled racism and xenophobia (“people’s ignorance”), the uninformed dismissal of traditional healing practices (“witchcraft”) that effectively treat many illnesses and that are available before and after foreign aid workers swoop in, or the failure to recognize the role of poverty, malnutrition and deforestation in making a region ripe for the spread of disease.

But that’s old news. Ebola has finally grabbed American headlines with two new developments. First, two Americans working in Africa have become infected and – with the help of super-advanced aviation technology – have been flown back to the United States. Second, these two Americans are being treated with a wonder drug “secret serum” that “likely saved” them.

Now we Americans may not care about water purification or sewage treatment systems, but we sure do love secret serums. Hollywood has made millions from that plot line. Indeed, secret serums are such a shoo-in that I’m thinking of writing a blockbuster script about a secret serum that cures poverty (or at least my own poverty!).

But Ebola is no laughing matter. Except, of course, for the pharmaceutical companies poised to profit when the highly touted secret serum goes on the market.

Let me be clear. I am delighted to see that a medication that may cure Ebola is in the pipelines. And I am thrilled to see that the two Americans who received the serum seem to be recovering. But we’d be putting our heads in the sand to think that an untested drug used on two otherwise healthy and well-nourished people who received the highest quality care at every step of the way means much of anything in regard to the realities on the ground in West Africa. We can’t celebrate the great achievement in developing a potential cure for Ebola without considering the legacy that helped Ebola emerge and spread.

Poverty and environmental degradation — all too often the consequences of global economic policies — set the stage for outbreaks of disease. Deforestation with herbicides such as Agent Orange and RoundUp facilitate the spread of disease. Unlike traditional methods of weed control in which farmers and gardeners selectively remove particular plants in order to allow room for the desired crop to thrive, these herbicides typically are spray bombed from airplanes, indiscriminately wiping out plant growth over large areas and often enter the respiratory systems of the people who live in those areas. While the jury is still out, prominent zoologists and virologists hypothesize that emergent infectious diseases such as Ebola may jump from animal to human populations when eco-systems are disrupted, causing new intensities of human – animal contact. According to Nathan D. Wolfe of the Johns Hopkins School of Hygiene and Public Health, “Human activities that occur in lowland tropical forests, such as ecotourism, logging, and the hunting of wild vertebrates have the potential to increase the frequency of microbial emergence.” Coupled with the densely populated living quarters in urban settings that allow for diseases to spread quickly, and malnourished bodies that are less able to fight off infection, the Ebola outbreak seems almost predictable.

I’m not a big believer in conspiracies. I tend to think that just like us good guys, the bad guys are too busy in-fighting to pull off super-duper clandestine hoaxes. And I believe most people who work for even the greediest large corporations rarely intend to hurt others — but their bosses have certainly benefited from it. We need to recognize that the chemicals that made West Africa fertile for the spread of Ebola were highly profitable for the West, and the new miracle drugs to cure Ebola promise to be equally profitable. In these days of giant multi-national corporations it’s virtually impossible to parse out who manufactures what. But from my outsider sociologist perspective what I see is this: Poison the earth with herbicides and when the soil is ruined for everyone else, there’s even more money to be made patenting and selling GMO seeds that can grow in soil no longer suited to traditional agricultural and horticultural techniques. Convince mothers in poor countries to buy infant formula so that mom can come work at their poverty-wage factory, and then sell antibiotics when baby becomes sick because mom can’t afford clean water to mix the formula. Push cigarettes (especially in poor neighborhoods, as R.J. Reynolds does with its Kool brand cigarettes) and acquire Kentucky Bioprocessing to develop post-exposure Ebola serum.

So, on the unlikely chance that my secret serum blockbuster doesn’t work out, here’s another idea. Maybe I’ll start a company that entices people into buying tons and tons of sugary snacks. I’ll have my day-shift workers produce the snacks at factories I’ll build in states where my friendly congressmen and senators have eliminated worker safety regulations and labor unions. Savvy entrepreneur that I am, I’ll have my night-shift workers produce diabetes medication that all of those eaters of my sugary foods will need to take for their rest of their lives. And, just to cover my bases, I’ll require my workers to switch between twelve-hour day and twelve-hour night shifts. That way I can be sure that during any given twenty-four hour period a bunch of them will need pills to be able to sleep or pills to be able to stay awake. With my profits from those pills I think I’ll build a privately owned prison to house all of those criminals caught using illicit uppers or downers. In the crowded prison, tuberculosis and other infectious diseases will easily spread, expanding the market for the antibiotics produced in the factories I’ll open up in countries that don’t have pesky things like minimum wages. Oh – and just to dot my ‘i’s and cross my ‘t’s, I’ll be sure that the prison canteen sells my sugary snacks at twice the price at which they are sold on the open market.

I love it when a plan comes together!

This article was first published on Truthout

According to reports from Washington, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) may come up for a vote in the Senate (again) this week. The last time it came up, two years ago, it did not pass.

On the face of it, the Convention does not seem in conflict with American laws or values. The core principles spelled out in the Convention are respect for the inherent dignity of all persons, the right to individual autonomy including the freedom to make one’s own choices, non-discrimination against persons on the basis of disabilities, full participation and inclusion in society, equality of opportunity, accessibility, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities.

Initially negotiated under President George W. Bush and signed by President Barack Obama in 2009, the Convention has been ratified by 146 countries and is backed by virtually all US disability organizations, veterans’ organizations and women’s organizations. According to supporters, the Convention reaffirms many of the same safeguards already legislated in the Americans With Disabilities Act, including access to education and prohibitions of discrimination in hiring. And while it does not in any way weaken US domestic law or surrender US sovereignty, it provides a clear statement that America has joined with the international community in recognizing the rights of all people regardless of abilities or disabilities.

The most vocal opponent, pressing Republicans to vote nay, has been the Home School Legal Defense Association which maintains that the Convention could undermine the rights of parents, supersede US law and compel government funding of abortions. (There is nothing in the Convention that suggests this would be the case, but “abortion” is always a good buzz word for ginning up opposition to just about anything.).

Our failure to ratify UNCRPD is consistent with US refusal to sign other human rights treaties. For example, the US is one of only three countries not to have signed the Convention on the Rights of the Child. (The other two are South Sudan and Somalia.) We haven’t ratified the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW), the world’s primary document on women’s equality. And we haven’t signed The Convention against Enforced Disappearance, which prohibits the secret detention and abduction of people by the state.

Opposition to ratifying all of these treaties follows a fairly consistent line of argument: International treaties infringe on US autonomy and sovereignty, and anyway, “we” don’t need these treaties since we already are “better” than the rest of the world. Regarding the UNCRPD, Will Estrada, HSLDA’s Director of Federal Relations declared, “Our country has been a world leader for people with disabilities. We don’t need to ratify this treaty to do that.”

Disability and Poverty

Mr. Estrada is incorrect. In the United States close to 38% of working age adults with severe disabilities live in poverty; the children of poor parents are substantially more likely than children of non-poor parents to have a physical or mental disability thatlimits their activities and having a child with chronic illnesses or disabilities is associated with greater poverty for parents.

American responses to disability are based on needs rather than on rights; that is, we allocate resources to help individuals on the basis of shifting definitions and thresholds of “neediness” rather than on a stable foundation of inherent rights to goods such as food, housing and healthcare. We also tend to be suspicious of claims of neediness. Services for those who are disabled typically require recipients to spend great amounts of time and energy certifying their eligibility and place a great deal of power in the hands of doctors, courts and bureaucrats to decide whose needs are legitimate. Our safety nets for people too disabled to work – SSDI (Social Security Disability Insurance) and SSI (Supplemental Security Income) – allot average monthly stipends of $1,186.60 and $536.75 respectively. That is not enough to cover the cost of daily necessities of life in most American cities, let alone sufficient for disabled people to live with dignity.

The higher SSDI are provided to individuals who have worked a sufficient number of years for employers who paid into Social Security; SSI is for those who have either been unable to work or whose employers did not pay into Social Security. At this time nearly 8.4 million people receive SSI. More than half of those recipients have been diagnosed with a mental disorder, and the majority of recipients are women (about 55%). These large numbers suggest either that as a nation we are losing our minds and / or that millions of Americans submit to being labeled mentally ill in order to receive the $536.75 per month that allows them access to (minimal) food and shelter in an economic climate that has not been friendly towards the 90% of us who are not born into wealth.

Disability and Punishment

The number of Americans receiving SSI went up at about the same rate as the number of Americans receiving welfare went down in the wake of the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (so-called “welfare reform”). Shifting people from welfare to SSI may be seen as a simple bookkeeping ploy, but by labeling certain people or groups as “needy” or “disabled,” we in fact define them as weak, as lacking in the attributes that we as a society admire. Indeed, given the negative qualities associated with need and weakness in American culture, disabled individuals are more likely than other Americans to become targets of correction and punishment.

According to a recent report by the National Center for Special Education Research forty-seven percent of young adults with disabilities report having been stopped by police for other-than-a-traffic violation and twenty-three percent report having been arrested. These rates are twice those for youth in the general population. Young adults with disabilities enter the juvenile correctional system at rates four to five times those of non-disabled youth. An estimated 37 percent of youth in state juvenile corrections facilities are eligible for special education and related services under IDEA, yet 16 percent of youth in short-term youth detention facilities, 52 percent of those in long-term youth corrections facilities, and 71 percent of those in adult corrections facilities were not enrolled in any kind of educational program during their incarceration. And the school to prison pipeline disproportionately picks up disabled youth of color.

Involvement with the juvenile justice system increases one’s probability for involvement with the adult correctional system. With the highest incarceration rate in the world, over seven million Americans are under some form of correctional supervision. Over half of the incarcerated population has a serious mental health issue and 40% suffer from chronic physical illness. Among women the numbers are even bleaker. Of the 47 formerly incarcerated Massachusetts women whom I have come to know over the past six years, 81% live with chronic physical illnesses including asthma, high blood pressure, heart disease, liver disease, Hepatitis B, Hepatitis C, HIV, chronic headaches, chronic pain, arthritis, disk degeneration, cancer and unresolved gynecological problems. Most live with more than one of these health challenges and more than half also have been identified as having learning disabilities. While unhealthy prison conditions coupled with the poor employment prospects facing ex-offenders partly explain the substandard health profile of Americans involved with the correctional system, the fact is that Americans entering prison are already sicker and poorer than other Americans.

Health, Wealth and Moral Worth

Americans are no more mean-spirited than people in the 146 countries that have ratified the United Nations Convention on the Rights of Persons with Disabilities. When I read books or see movies that describe cultures in which disabled people are mocked, teased or even killed, I am thankful for our sense of decency, for the Americans With Disabilities Act, for the accommodations (however deficient they may be) for disabled people. At the same time, however, I can’t help but notice that we are criminalizing disability. And that trend, while particularly dramatic during this age of mass incarceration, is deeply rooted in American culture. Since the time of the Puritans, Americans have identified good health (as well as wealth) with moral worth – with living an estimable life style, with working hard, “taking care of oneself,” doing the “right thing.”  This association between health and moral worth is neither natural nor universal; in many cultures people who struggle with pain, illness or disability are recognized for having greater spiritual gifts, for being closer to or chosen by God or for developing greater sensitivity to the suffering of others. In our culture people living with disabilities are recognized as having greater needs – and we do a great deal to meet those needs. But we have not yet recognized that while needs make one “needy,” rights give pride, autonomy and dignity.

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“As Profits Roll In, Aetna To Expand On Obamacare Exchange In 2015” 

“The Obama administration issued rules to allow for a taxpayer-funded insurer bailout.”

According to Forbes Magazine, health insurance companies have recorded substantial profits in the wake of eight million people signing up for coverage during the first “Obamacare” open enrollment period. That’s great news for stockholders, CEOs, CFOs and a handful of other lucky people. But given that the United States spends more on healthcare while ranking at the bottom of the industrialized world in terms of health outcomes, this isn’t such great news for the rest of us.

The enormous resources that many Republicans have poured into attacking Obamacare have, to my eyes, lulled many of us on the left into forgetting that the Affordable Care Act was no more than a political compromise between middle-of-the-road Democrats and right-of-center Republicans. Though it includes a number of good provisions and a certain expansion of healthcare coverage, the ACA was never designed to overhaul the United States healthcare landscape. We still have a chaotic multitude of financing and delivery mechanisms. We still have for-profit and not-for-profit hospitals, though it’s not always clear which is which. We still use emergency rooms as expensive safety nets that by federal law are only required to assess and stabilize patients (and are allowed to charge a whole lot to do so), not to cure them. We still have a smorgasbord of donut holes, coverage gaps and nonsensical limits on rehabilitative services such as physical therapy. We still have no rational system for allocating services. Moreover, as the Forbes articles cheerfully proclaim, the ACA has been a bonanza for the very same insurance companies that have cherry picked “healthy” members, denied care to sick people, wasted healthcare dollars on astronomical administrative costs, and assessed outcomes in terms of the bottom line rather than in terms of health and well-being. The name Affordable Care Act obscures the reality that even with health insurance, healthcare is hardly affordable for most Americans.

Many of us on the left acquiesced to supporting the ACA because of a vague promise that this would be the first step to real reform, to developing a system of universal coverage in which all people have the right to healthcare. For the past six years I’ve been a good foot soldier for President Obama. I’ve donated money and signed petitions each time the Republicans come up with some new attack on Obamacare. But I want to be very clear: The ACA is not the endgame for progressives. It’s high time for us to stop worrying about the Republicans (who won’t pass any legislation in any case) and push forward a true progressive agenda.

Rights versus Responsibilities

Broadly speaking, there are two basic healthcare paradigms: healthcare as a human right and healthcare as a personal responsibility. Healthcare as a right rests on the deeper belief that all human beings are fragile creatures. Our two-footed upright posture makes us susceptible to injuries and accidents, and complicates the business of pregnancy and childbirth. We have long periods of infancy and childhood in which we cannot take care of ourselves. We live to be old enough for our bodies and (sadly) our minds to break-down over periods of many years. Our social instincts bind us in communities in which infections pass from person to person. Our large brains and nimble fingers develop remedies, manipulations and treatments that allow us to facilitate healing from the injuries and infections to which all humans are vulnerable. Recognizing both the universality and the unpredictability of those vulnerabilities, the rights paradigm valorizes and codifies our moral obligation to ensure that simply by virtue of being human we all have the right to appropriate, affordable, accessible and acceptable healthcare.

In the United States, in contrast, we typically understand both health as well as healthcare to be a personal responsibility rather than a human right. Each individual has a moral responsibility to take care of him or herself by exercising, eating nutritious foods, avoiding stress and going for annual exams such as mammograms (even if these “responsibilities” are impossible for many people to fulfill). Each is responsible for acquiring the resources to be able to afford healthcare which in effect frames healthcare as a privilege for those who can pay. Those unfortunates who can’t afford healthcare bear the responsibility for proving “true” neediness and for following through with requirements for certification and re-certification of that need in accordance with fluctuating policies and to the satisfaction of cadres of bureaucrats. Individuals also have the responsibility to take care of their own young children (this obligation does not extend to other family members or friends, though we do say nice things about people who do care for aging parents). Employers in certain types of companies have a responsibility to subsidize the costs of health insurance for their employees. And, under the ACA, individuals, with certain exceptions, have a responsibility (a.k.a. “individual mandate”) to be insured.

Fancy Gambling

Insurance is, of course, a fancy form of gambling. We purchase car, house, health and life insurance because we want to cover our bases in the event of an unlucky spin of the wheel or tumble of the dice: a fender bender, a lightning strike, a heart attack. We gamble that we’ll get back more than we pay out and the insurance company gambles that they’ll pay out less than they take in. Some people enjoy the adrenaline surge of choosing a number at the roulette wheel or waiting to uncover the next blackjack card. I do not.

When I look at the state and federal exchanges meant to serve those Americans who need health insurance, I feel overwhelmed. I have neither the time nor the knowledge to calculate which plan is the most economical for my particular constellation of medical needs or the needs of my family. The exchanges offer me a variety of packages with varying divisions between upfront premiums, co-pays, co-insurance and deductibles. Should I choose a plan with a high premium but lower out-of-pocket costs down the road? That would be a good choice if I knew in advance that I’d have a lot of health issues down the line and if I had the ready cash to pay the upfront premium. Or should I choose a plan with a lower premium but higher deductibles or co-payments? That would make sense if I knew in advance that I’d have a healthy year – but who among us knows that we will? Actuaries calculate these things on the basis of large populations – not for one individual. Indeed, in calculations I have made based on the Massachusetts exchange (Commonwealth Connector) people are just as likely to “choose” a plan that ends up costing them more than a plan that ends up costing them less.

“Choice” is one of the ACA mantras – that Americans should be able to “choose” the plan that is “right for you.” But that choice is phony. We do not choose our diseases. We rarely choose our doctors or hospitals, and when we do that choice is seldom based on any real data. We almost never know enough about modern medicine to be able to choose our treatments. And alternative and complementary medicine that might constitute real choices (vis-à-vis conventional medicine) is not addressed in the ACA.

In healthcare roulette, putting your dollars down on the wrong number can cost you more than you would ever wish to lose. But like in all games of chance, you cannot know which number is right and which is wrong. Not being blessed with the gift of prophecy, most of us cannot predict what medical needs might arise in the future. Insurance companies, however, hire brilliant mathematicians – trained actuaries – who study massive amounts of data which enable them to calculate how much to charge so that the insurance company takes in more money than it pays out. As they say in Vegas, the house always wins. The Forbes reports make that abundantly clear.

Susan Sered is the co-author of Uninsured in America: Life and Death in the Land of Opportunity.