industryterm:cancer treatment

  • Why Data Privacy Based on Consent Is Impossible
    https://hbr.org/2018/09/stop-thinking-about-consent-it-isnt-possible-and-it-isnt-right

    For a philosopher, Helen Nissenbaum is a surprisingly active participant in shaping how we collect, use, and protect personal data. Nissenbaum, who earned her PhD from Stanford, is a professor of information science at Cornell Tech, New York City, where she focuses on the intersection of politics, ethics, and values in technology and digital media — the hard stuff. Her framework for understanding digital privacy has deeply influenced real-world policy.

    HBR senior editor Scott Berinato spoke with Nissenbaum about the concept of consent, a good definition of privacy, and why privacy is a moral issue. The following excerpts from their conversation have been edited for clarity and length.

    HBR: You often sound frustrated when you talk about the idea of consent as a privacy mechanism. Why?

    Nissenbaum: Oh, it’s just such a [long pause] — look, the operationalization of consent is just so, so crummy. For example, as part of GDPR, we’re now constantly seeing pop-ups that say, “Hey, we use cookies — click here.” This doesn’t help. You have no idea what you’re doing, what you’re consenting to. A meaningful choice would be, say, “I’m OK that you’re using cookies to track me” or “I don’t want to be tracked but still want to enjoy the service” or “It’s fine to use cookies for this particular transaction, but throw unnecessary data out and never share it with others.” But none of these choices are provided. In what sense is this a matter of choosing (versus mere picking)?

    The farce of consent as currently deployed is probably doing more harm as it gives the misimpression of meaningful control that we are guiltily ceding because we are too ignorant to do otherwise and are impatient for, or need, the proffered service. There is a strong sense that consent is still fundamental to respecting people’s privacy. In some cases, yes, consent is essential. But what we have today is not really consent.

    Even if you tried to create totally transparent consent, you couldn’t. Well-meaning companies don’t know everything that happens with the data they collect, particularly those that have succumbed, against their better judgment, to the pressures of online tracking and behavioral targeting. They don’t know where the data is going or how it will be utilized. It’s an ever-changing landscape. On the one hand, requiring consent for every use isn’t reasonable and may prevent as many good outcomes as bad ones. Imagine if new science suggests a connection between a property, or cluster of properties, and a particular cancer treatment. Returning for consent may impose obstacles that are impossible to overcome.

    But on the other hand, what exactly does it mean to grant consent no matter what uses may come up in the future? Think about a surgeon explaining a procedure to a patient in great medical detail and then asking, “Are you OK with this?” We kid ourselves if we believe that consent is all that stands in the way of surgery and outcome. Most of us say OK not because we deeply grasp the details and ramifications but because we trust the institutions that educate and train surgeons, the integrity of the medical domain, and — at worst — the self-interest of the hospitals and surgeons wishing for positive acclaim and to avoid being sued.

    It’s not that we don’t know what consent means; it’s that getting to a point where we understand the true sense of what consent means is impossible.

    Annexe : devinez chez quel éditeur le livre Obfuscation d’Helen Nissenbaum va paraître cet automne ?

    #Helen_Nissenbaum #Vie_privée #Consentement

    • Merck Is Lowering Drug Prices. There’s a Catch. - The New York Times
      https://www.nytimes.com/2018/07/19/health/merck-trump-drug-prices.html

      The drugmaker Merck said Thursday that it would lower prices on several drugs by 10 percent or more, but its rollback affects minor products and would not lower the cost of its top-selling, expensive cancer and diabetes products.

      The move follows recent announcements by Pfizer and Novartis that they would freeze price increases for the rest of the year, as the industry confronts sustained criticism from President Trump, lawmakers and the public over the rising cost of prescriptions.

      Merck’s action shows just how cautiously the industry is shifting strategies: It did not cut the prices of any blockbusters like the cancer treatment Keytruda or the diabetes drug Januvia. Instead, it said it would reduce by 60 percent the list price of Zepatier, a hepatitis C drug whose recent sales have dipped so low that, after paying after-the-fact rebates to insurers, the company recorded no sales in the United States for the product in the first quarter of this year.

      The six other products that Merck said it was discounting were drugs that had lost their patent protection and are available from other manufacturers as low-cost generics.

  • #hacking the Whole #body Approach to #health
    https://hackernoon.com/hacking-the-whole-body-approach-to-health-64b31a8278e?source=rss----3a81

    Eastern and Western approaches to medical practice have often been seen as complete opposites. In fact, many studies have show this view to be folly, and Eastern, also known as Traditional Chinese Medicine (TCM), practices are proven to help alleviate ailments ranging from arthritis, gynecological pain, and migraines to cancer treatment side effects. It has been a mystery why exactly the implementation of acupuncture, yoga, and other TCM practices seem to work, but a new scientific discovery is clearing up the Eastern medicine phenomena that has puzzled Western practitioners.This past March, a team of doctors led by researcher and doctor of pathology Neil Theise of NYU’s Langone School of Medicine discovered what they are referring to as a new organ.It’s name―the interstitium.Using pCLE, (...)

    #healthcare #tech

  • Goldman asks: ’Is curing patients a sustainable business model?’
    https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patients-a-sustainable-business-model.html

    “Is curing patients a sustainable business model?” analysts ask in an April 10 report entitled “The Genome Revolution.”

    “The potential to deliver ’one shot cures’ is one of the most attractive aspects of gene therapy, genetically-engineered cell therapy and gene editing. However, such treatments offer a very different outlook with regard to recurring revenue versus chronic therapies,” analyst Salveen Richter wrote in the note to clients Tuesday. “While this proposition carries tremendous value for patients and society, it could represent a challenge for genome medicine developers looking for sustained cash flow.”

    (…) “GILD is a case in point, where the success of its hepatitis C franchise has gradually exhausted the available pool of treatable patients,” the analyst wrote. “In the case of infectious diseases such as hepatitis C, curing existing patients also decreases the number of carriers able to transmit the virus to new patients, thus the incident pool also declines … Where an incident pool remains stable (eg, in cancer) the potential for a cure poses less risk to the sustainability of a franchise.”

    #économie #recherche #pharma #biens_publics #merci @archiloque

  • What Needs to Change in Cancer Treatment for Young Adults - Facts So Romantic
    http://nautil.us/blog/what-needs-to-change-in-cancer-treatment-for-young-adults

    For a while, oncologists didn’t get it. Many were, both during and after these young patients’ treatment, often oblivious to and ill-equipped to meet their needs.Photograph by U.S. Air Force photo/Tech. Sgt. Peter DeanI treated an inspiring teenage girl in my clinic the other day. Although Sadie has made a complete recovery from her liver cancer and bears no physical scars from the treatment, anxiety and depression followed her through childhood and adolescence. Last year, I introduced her to our local support group for these adolescent young-adults patients, 13thirty Cancer Connect, and she’s blossomed. She hangs out at their local center weekly, has countless new friends, all of whom had or have cancer, and goes on field trips and other programs with them. Her comfort in her own skin (...)

  • Despite What the Press Says, “Maverick” McCain Has a Long and Distinguished Record of Horribleness
    https://theintercept.com/2017/07/27/john-mccain-fake-maverick-horrible-record

    WHAT SORT OF PERSON takes a break from taxpayer-funded cancer treatment and flies 2,000 miles to cast a vote that could result in 22 million people losing their health insurance and tens of thousands of them also losing their lives, then makes a big speech about how messed up the whole process is?

    Perhaps the same sort of person who relentlessly agitated for an invasion and occupation of Iraq that caused the deaths of hundreds of thousands of Iraqis and led to millions of others being displaced from their homes?

    Or maybe the same sort of person who put personal and party interests ahead of the national interest when he picked the know-nothing, far-right demagogue Sarah Palin, the ur-Trump, as his running mate in 2008?

    Meet John Sidney McCain III…

  • This Man’s Immune System Got a Cancer-killing Update - Facts So Romantic
    http://nautil.us/blog/this-mans-immune-system-got-a-cancer_killing-update

    William Ludwig was almost dead when he became Patient Number One in a radical new cancer treatment, one that’s just won the endorsement of F.D.A. advisors.Photograph by sebastianosecondi / ShutterstockWilliam Ludwig was a 64-year-old retired corrections officer living in Bridgeton, New Jersey, in 2010, when he received a near-hopeless cancer prognosis. The Abramson Cancer Center at the University of Pennsylvania had run out of chemotherapeutic options, and Ludwig was disqualified from most clinical trials since he had three cancers at once—leukemia, lymphoma, and squamous cell skin cancer. In a later interview, the scientist Carl June described Ludwig’s condition as “Almost dead.” Alison Loren, an oncologist at Penn, had been taking care of Ludwig for five painful years. If chemotherapy is (...)

  • Cancer’s Financial Cost Can Be Almost as Toxic to Patients as the Disease Itself - Facts So Romantic
    http://nautil.us/blog/cancers-financial-cost-can-be-almost-as-toxic-to-patients-as-the-disease-itse

    Financial distress due to cancer treatment could count as another cancer mortality risk factor, alongside smoking, diet, and exercise.Photograph by John Piekos / FlickrAdd a new entry to the list of factors that can exacerbate a cancer diagnosis: money. Paying for cancer treatment is expensive, and for many patients, the financial distress can be severe—so much so that, as recent evidence suggests, it could count as another cancer mortality risk factor, alongside smoking, diet, and exercise. So researchers began calling this distress “financial toxicity,” because of how it influences patients’ well-being, their treatment decisions, and health outcomes.Yet video-recorded clinical interactions show oncologists and patients broaching the subject of expense in fewer than half of their (...)

  • This Cancer Treatment Extends Life Without Pills, Radiation, or Surgery - Facts So Romantic
    http://nautil.us/blog/this-cancer-treatment-extends-life-without-pills-radiation-or-surgery

    The very act of existential unburdening proves to be life prolonging.Photograph by UpperCut Images / GettyWhat would go through your mind if I told you that you had cancer? Perhaps you’d wonder how you got it, or how you were going to get rid of it. Maybe you’d worry about whether you could keep working, or, if you have children, how they might react when you broke the news to them. You always had good hair, you think, but all good things…well, let’s not finish that thought just yet. Or maybe you’d have a sense, false or otherwise, that you would not best cancer, but that it would best you. Now what if I told you that counseling led by a specialist physician on the psychological, social, and existential qualities of the disease could make you live longer? For far too long, the medical (...)

    • #cancer #psychologie #douleur #souffrance #solitude

      Patients who received palliative care not only reported better quality of life and less depression, but they actually lived nearly three months longer than the group that didn’t receive palliative care.

      (une boîte #pharma qui aurait un médicament avec ce genre d’effets vaudrait immédiatement plusieurs dizaines de milliards de dollars en Bourse)

  • Roche says flexible pricing ready for cancer, not MS drugs | Reuters
    http://uk.reuters.com/article/us-roche-novartis-pricing-ms-idUKKBN132159

    new data-driven flexible pricing schemes the Swiss drugmaker and others in the industry are pushing to replace today’s “pay-per-pill” approach are well advanced in cancer treatment (…)

    Such schemes foresee drug pricing based on measurable benefits for a patient or health care systems, an approach seen as becoming more important as aging populations and chronic disease put the squeeze on health care systems.

    Roche has introduced flexible pricing for cancer drugs in about a dozen European countries, including Italy, Belgium, Hungary, Switzerland and Austria. For instance, it already prices drugs like Avastin differently in some markets depending on the cancer being targeted.

    #cancer #pharma #prix_à_la_tête_du_patient

  • A Souvenir Smuggled Home From Cuba : A #Cancer Vaccine
    http://www.nytimes.com/2016/11/15/health/cancer-vaccine-cuba-medical-tourism.html

    Since beginning to normalize relations with the United States in 2014, Cuba has become a hot tourist draw with its unspoiled beaches and vibrant night life. But the country also has a robust biotechnology industry that has generated an innovative vaccine called Cimavax. It is part of a new chapter of cancer treatment known as immunotherapy, which prompts the body’s immune system to attack the disease.

    [...]

    “There’s no doubt that without this medicine, I would be dead,” said Mick Phillips, 69, of Appleton, Wis., who first went to Cuba in 2012 and has been returning annually ever since. “When we were children, we were taught that Cubans didn’t know what they were doing. Turns out they do.”

    [...]

    The Cuban health care system has long been recognized for providing high-quality health care. A 2015 report on the Cuban health system by the World Health Organization noted, “In Cuba, products were developed to solve pressing health problems, unlike in other countries, where commercial interests prevailed.”

    #santé #pharma

  • Sur le phénomène des #journaux_prédateurs (#spam scientifique) :

    Journal Accepts Paper Reading “Get Me Off Your Fucking Mailing List”
    http://www.iflscience.com/technology/journal-accepts-paper-reading-get-me-your-fucking-mailing-list
    http://www.iflscience.com/sites/www.iflscience.com/files/styles/ifls_large/public/blog/%5Bnid%5D/Screen_Shot_2014-11-21_at_10.19.51_AM.0.0.jpg?itok=4MeXBtp6

    A paper that largely consists of the words “Get me off your fucking mailing list” repeated 863 times has been accepted by a journal that claims to be peer reviewed. The move might appear to offer hope to scientists struggling to get marginal work published, but really just exposes the extent of scam publications pretending to be contributing to science.

    et un blog qui recense ces faux journaux qui permettent contre rémunération d’avoir des “publi” que personne ne lira jamais.

    http://scholarlyoa.com

    #bibliométrie #recherche via @anne

  • Early-Stage Breast Condition May Not Require Cancer Treatment - The New York Times
    http://www.nytimes.com/2015/08/21/health/breast-cancer-ductal-carcinoma-in-situ-study.html

    As many as 60,000 American women each year are told they have a very early stage of breast cancer — Stage 0, as it is commonly known — a possible precursor to what could be a deadly tumor. And almost every one of the women has either a lumpectomy or a mastectomy, and often a double mastectomy, removing a healthy breast as well.

    Yet it now appears that treatment may make no difference in their outcomes. Patients with this condition had close to the same likelihood of dying of breast cancer as women in the general population, and the few who died did so despite treatment, not for lack of it, researchers reported Thursday in JAMA Oncology.

    Their conclusions were based on the most extensive collection of data ever analyzed on the condition, known as ductal carcinoma in situ, or D.C.I.S.: 100,000 women followed for 20 years.

    #cancer #femmes #mastectomie #recherche #santé #médecine via @isskein

  • Access to #Cancer Treatment | Oxfam International
    http://www.oxfam.org/en/research/access-cancer-treatment

    In low- and middle-income countries, expensive treatments for cancer are not widely available. Unsustainable cancer medication pricing has increasingly become a global issue, creating access challenges in low-and middle-income but also high-income countries.

    This report describes recent developments within the pricing of medicines for the treatment of cancer

    #pharma #brevets

  • The French way of cancer treatment
    http://blogs.reuters.com/anya-schiffrin/2014/02/12/the-french-way-of-cancer-treatment

    In 2011, France’s expenditure on health per capita was $4,086, compared to $8,608 in the United States, according to the World Health Organization. Spending as a percentage of gross domestic product was 11.6 percent in France while in the United States it was a far higher 17.9 percent.

    Ainsi donc le système capitaliste qui veut tout privatiser nous mentirait ? Rhooooo.

    via https://n.survol.fr/n/une-question-de-redistribution-et-de-modele-social

    #santé #sécurité_sociale

  • Pharmaceuticals : The price of failure | The Economist
    http://www.economist.com/news/business/21635005-startling-new-cost-estimate-new-medicines-met-scepticism-price-f

    Among those rejecting this new figure as highly misleading are Médecins Sans Frontières, a charity, and the Union for Affordable Cancer Treatment, a patients’ group.

    The main point of controversy over such estimates is that they roll in the costs of those drugs that failed to win approval and, for good measure, the cost of capital required for the R&D. Tufts’s estimate includes $1.2 billion for the return on capital forgone while a drug is in development, on the assumption it would have otherwise earned a generous 10.5% a year. The remaining $1.4 billion is the average R&D cost of a random selection of drugs, multiplied by risk factors that account for the chances of failure at each stage.

    #big_pharma #coûts #mensonges #r&d #cancer

    Je fais partie de ce groupe UACT nouvellement créé pour lutter contre le prix exorbitant des médicaments anticancéreux : http://cancerunion.org

  • Cancer Medicine Prices in Low- and Middle-Income Countries | Management Sciences for Health
    http://www.msh.org/resources/cancer-medicine-prices-in-low-and-middle-income-countries

    #cancer is one of the leading causes of death worldwide; in 2008, it accounted for approximately 7.6 million deaths (13 percent of all causes of death). More than 70 percent of all cancer deaths occurred in low- and middle- income countries (LMICs). While it is estimated that more than 30 percent of deaths can be prevented through early detection and modifying or avoiding key risk factors, the demand for cancer treatment, especially in low-income countries, is not being adequately met. High cost and poor availability of cancer treatment are significant barriers to access

    Download the #report

    #santé #inégalités

  • #Cancer Drug Innovation Surges As Cost Growth Moderates - FiercePharmaMarketing
    http://www.fiercepharmamarketing.com/press-releases/ims-health-study-cancer-drug-innovation-surges-cost-growth-mo

    In the U.S. market, which contributes 41 percent of total oncology drug sales, changes in the structure of healthcare delivery are impacting cancer treatment site of care, reimbursement and patient out-of-pocket costs. Physician practices are becoming larger, and healthcare organizations that care for underserved populations and are covered by the 340B Drug Discount Program have expanded their oncology presence, as have Accountable Care Organizations. This is resulting in a shift in patient care from physician offices to hospital outpatient facilities. (...) These higher costs are also associated with higher patient out-of-pocket costs depending on insurance plans and benefit designs, and can trigger reduced levels of therapeutic persistence by patients and higher overall cost of care.

    via @jamielove

  • American compares his #cancer treatment experience in #France and #USA
    and realizes he lives in the third world:
    http://blogs.reuters.com/anya-schiffrin/2014/02/12/the-french-way-of-cancer-treatment

    "I found people assumed [my dad] was getting VIP treatment or had a fancy private plan. Not at all. He had the plain vanilla French government healthcare.

    I had read many articles about the French healthcare system during the long public debate over Obamacare. But I still I hadn’t understood fully, until I read this interview in the New York Times, that the French system is basically like an expanded Medicaid. Pretty much everyone has insurance and the French get better primary care and more choice of doctors than we do. It also turns out, as has been much commented on, that despite all this great treatment, the French spend far less on healthcare than Americans.

    In 2011, France’s expenditure on health per capita was $4,086, compared to $8,608 in the United States, according to the World Health Organization. Spending as a percentage of gross domestic product was 11.6 percent in France while in the United States it was a far higher 17.9 percent"

    #insurance #healthcare #health

  • #Cancer Culture - S. Lochlann Jain
    https://anthropology.stanford.edu/people/lochlann-s-jain

    Usually cancer is studied as a distinct, finite, disease that some unfortunate people get. Nevertheless, over half of all Americans will be diagnosed with an invasive cancer. In this book, based in extensive analysis of the history, politics, and science of cancer, as well as years of fieldwork, I examine the ways that cancer is not separate from, but is central to medical, political, and social economies.

    lire en particulier “Be Prepared” et “Cancer Butch”

    • https://anthropology.stanford.edu/sites/default/files/jain.beprepared.pdf

      Did my mind declare war on my body ?

      J’ai passé un peu de temps pour mettre le pdf en texte ici (en OCR car ce sont des images du livre de mauvaise qualité), de manière à ce qu’il puisse être lu par les non anglophones. J’ai corrigé les premières pages, si j’ai le courage je ferais la suite au fur et à mesure.
      Dans tous les cas, ce texte méritait d’être diffusé, j’espère que l’auteur sera d’accord.

      I don’t blame people for not knowing how to engage with a person with cancer.
      How would they? Heck, I hadn’t either. Despite the fact that each
      year 70,000 Americans between the ages of fifteen and forty are diagnosed
      with the disease and that incidence in this age group has doubled in the last
      thirty years, many of my friends in their thirties have never had to deal with
      it on a personal level.

      I remember when my cousin Elise was undergoing chemotherapy treatment while in her early thirties. When I met her I couldn’t even mention it,
      couldn’t (or wouldn’t, or didn’t) say that I was sorry or ask her how it was
      going---even though it was so obviously the thing that was going on. I was
      thirty-five for God’s sake, a grown—up, a professional, a parent, and cancer
      was so unthinkable that I couldn’t even acknowledge her disease. When my
      former partner’s sister showed up at our house all bald after her chemotherapy, my only remark was, “Hey, you could totally be a lesbian.” I was terrified,
      or in denial. More likely I had picked up the culture of stigma and this disabled me from giving genuine acknowledgment. But whatever sympathetic spin you want to put on it, I sucked in all the ways that I had to learn how to deal with later. Indeed, an assumption of exceptionalism was only the flip side of my own shame.

      Fantasies of agency steep both sides of diagnosis. On the “previvor” side,
      images continually tell us that cancer can be avoided if you eat right, avoid
      Teflon and smoking, and come from strong stock. Alternatively, tropes of
      hope, survivorship, battling, and positive attitude are fed to people post-
      diagnosis as if they were at the helm of a ship in known waters, not along
      stormy and uncharted shores. And yet, so little of cancer science, patient
      experience, or survival statistics seems to provide backing for the ubiquitous
      calls for hope in the popular culture of cancer. After all, who would celebrate
      a survivor who did not stand amid at least a few poor SOBs who fell?

      Everyone who has "battled,” “been touched by,” “survived,” been “made
      into a shadow of a former self,” or has been called to inhabit the myriad can-

      170

      car cliches has been asked to live in a caricature. As poets say in rendering
      their craft, clichés serve to shut down meaning. Clichés allow us not to think
      about What we are describing or hearing about: we know roses are red. People
      with cancer are called to live in and through—even if recalcitrantly—these
      hegemonic clichés by news articles, TV shows, detection campaigns, patient
      pamphlets, high—tech protocol—driven treatments, hospital organizations and
      smells, and everyday social interactions. Such cultural venues as marches
      for hope, research funding and direction, pharmaceutical interests, survivor
      rhetoric, and hospital ads constitute not distinct cultural phenomena, but
      overlap to form a broader hegemony of ways that cancer is talked about and
      that in turn control and diminish the ways that cancer culture can be inhab-
      ited and spoken about. Cancer exceeds the biology of multiplying cells. But
      the paradoxes of cancer culture can also be used to reflect on broader Ameri—
      can understandings of health and the mismatch of normative assumptions
      with the ways people actually live and die. "lhe restricted languages of cancer
      are not innocent.

      For an example of how individuated agency is used in cancer, one might
      look to the massive literature and movement spurred by Bernard Siegel,
      which is based in the moral complex of cancer and what he describes as the
      “exceptional patient.” In Love, Medicine, and Miracles: Lessons Learned about
      Self—Healing from a Surgeon’s Experience with Exceptional Patients, Siegel
      writes about having the right attitude to survive cancer(1). In Siegel’s View and
      its variants, surviving cancer becomes a moral calling, as if dying indicates
      some personal failure. Siegel—style literature offers another form of torture
      to people with cancer: Did my mind declare war on my body? Am I a cold,
      repressed person? (Okay, don’t answer that.) This huge and punishing industry preys on fear as much as any in the cancer complex and adds guilt to the mix.
      As one woman with metastatic colon cancer said on a retreat I attended,
      “Maybe I haven’t laughed enough. But then I looked around the room and
      some of you laugh a lot more than I do and you’re still here.” She died a year
      later, though she laughed plenty at the retreat.

      It’s no wonder that shame is such a common response to diagnosis. The
      dictionary helps with a description of shame: “The painful emotion arising
      from the consciousness of something dishonoring, ridiculous, or indecorous in one’s own conduct or circumstances, or of being in a situation which
      offends one’s sense of modesty or decency.(2)” Indeed, cancer does offend. People in treatment are often advised to wear wigs and other disguises, to joke
      with colleagues; they are given tips on how to make others feel more at ease.
      One does want to present decency, to seem upbeat. And so do others. A quick

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      “you look good,” with a response of “oh, thanks,” offers a Welcome segue to
      the next discussion topic and enables a certain propriety to circumscribe the
      confusion of proper responses to illness, to the stigma embodied by the possibility of a short life and a painful death. One person with metastatic disease
      calls herself, semi-facetiously, “everyone’s worst nightmare.” Others Speak
      about how hard it is to see the celebration of survivors while knowing that
      they themselves are being killed by the disease.

      Social grace is a good thing. But given the scope of the disease --- half of all
      Americans die of it and many more go through treatment --- one might wonder what or whom such an astonishing cultural oversight serves. After all how can cancer, a predictable result of an environment drowning in indus:
      trial and military toxicity, be dishonoring or indecorous ? I don’t mean its
      side effects; the physical breakdown of the body is perhaps definitive of the
      word “indecorousf” But these pre- and post-diagnosis calls to disavowal can
      help illuminate the ugly underside of American’s constant will to health, its
      normative assumptions about health and the social) individual, and generational traumas that it propagates. Expectations and assumptions about life span and their discriminatory and generational effects offer but one of many venues for such an exploration.

      Survivorship in America

      Perhaps it’s a class issue, but I didn’t really think about survival until I was
      called to consider being in the position of the one who might be survived.
      I was just tootling along until I was invited by diagnosis to inhabit this category, to attend retreats, camps, and support groups, to share an infusion
      room—to do all kinds of things with many people who have not, in fact,
      survived cancer—and thus to survive them at their memorial services, the
      garage sales of their things> and in the constructing and reading of memorial
      Websites and obituaries.

      To be sure, cancer survivorship (as opposed to either cancer death or
      just plain survival) comes with its benefits. I got a free kayak, albeit with a
      leak. When things are going really wrong I think about how my life insur-
      ance could pay for some cool things for my kids, or that maybe I don’t have
      to worry about saving for a down payment since in order for a home to be
      , a good investment you should really plan to live in it for five years. Some-
      times,when you find yourself buying into those cancer mantras of living in
      the moment, you can look around from a superior place at all the people
      scurrying around on projects you have determined do not matter—and then

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      go and do the laundry or shop for groceries, just like everyone else. Or like
      Bette Davis does in the movie Dark Victory as she dies of a brain tumor; you
      can consider yourself the lucky one, not having to survive the deaths of those
      You love. You have that strange privilege of being able to hold the materiality
      of your own mortality up against every attempt to make value stick. You may
      Wonder, as I do, how anyone survives the death of a parent or a sibling or a
      close friend or lover—the things that are purportedly normal life events—
      until you go through it yourself.3

      On the other hand, it may be easy to devolve into the narcissism of unremitting fear.
      I like to keep in mind what a driver once told me when I asked
      him what it was like to drive celebrities such as Oprah Winfrey around New
      York He said, “They like to think they are important. But after every funeral
      I’ve been to, people do the saaaaame thing. They eat.”

      The doctor survives the clinical trial, the child survives the parent, the
      well survive the sick But how have we come to take this survivorship for
      granted, as something to which we are entitled? Even a century or two ago
      there would have been a good chance that several of us would have died in
      childbirth or of some illness. Devastating as it may have been, we would have
      expected this. And we don’t exactly live in a medical nirvana. The United
      States is not even in the top ten for the longevity of its population. In fact, the
      United States is missing from the top twenty or even thirty for longevity in
      the world. In some studies, it’s not even in the top forty.4 Despite this statistic,
      the United States spends more than any other nation on health care. Part of
      Americans’ dismal life expectancy results from the broad lack of access to
      health care as well as the broader and well-documented discrimination in
      health care against the usual suspects: African Americans, women, younger
      people, and queers. But other factors that afiect even those with excellent
      access to excellent care play in as well: the high levels of toxins in the environment, including those in human and animal bodies; cigarettes; guns; little
      oversight for food, automobile, and other product safety; high rates of medical error.

      In short, despite the insistent rhetoric of health, American economies
      simply do not prioritize it. That’s okay. There is no particular reason that the
      general health of a population should trump all other concerns. But given the
      evidence, how do we come to believe this disconnect between dismal health
      status in the United States and the entitlement to normative health and life
      span? What kind of management has this necessary disavowal required? And
      what about the obverse of this question: how do these stories constitute those
      who are forced to drop out? After all, if survival is a moral and financial

      173

      Figure 13.1: The 2006 “Put Your Lance Face On” campaign from American Century
      Investments. This version of the promotional photo omits the warning, required in print
      advertisement publications, that it is possible to lose money by investing (included in the
      original).

      expectation and entitlement, then mortality must be constituted as something outside of normal life, even though these early deaths pay for pension:
      and other deferred payments. Even though everyone will die. I hypothesize
      that stigma and shame offer a way to examine and challenge ideals of health
      and the Ways that normative life spans have been constructed.

      Accumulation

      For analytical wealth in this matter, nothing beats a recent advertisement for
      American Century Investments that featured Lance Armstrong (figure 13.1).

      Armstrong has provided something of a translational figure for the nexus
      of industry, cancer, and humanitarianism that constitutes the discourses of
      cancer survivorship, foregrounding and even heroizing cancer survivors. His
      own story relentlessly underpins this cultural work.

      174

      While some accounts of Armstrong’s success go so far as to credit chemotherapy for literally rebuilding his body as a cycling machine, and others link his drive and success to his cancer experience, Armstrong continually presents himself in public as a survivor, claiming that his greatest success and pride is having survived cancer. In his autobiography, It’s Not About the Bike, Armstrong describes how, when diagnosed with testicular cancer in 1996,
      he actively sought the best care available to overcome a poor prognosis. He
      chose a doctor Who offered a then-new treatment that turned out to revolutionize the treatment for testicular cancer, turning the disease from a highrisk cancer to a largely curable one even in its metastatic iteration. This coincidence in the timing of his disease and this new treatment has enabled him to make his own agency in finding medical care into another inspirational aspect of his cancer survival story.

      In fact, cancer treatments are some of the most rote, protocol-driven
      treatments in medical practice, perfect examples of what historian Charles
      Rosenberg has detected as the rationalization of disease and diagnosis at
      the expense of the humanness of individual patients.5 Yet Armstrong’s story
      serves several purposes. It overemphasizes the role of agency in the success
      of cancer treatment, a View that correlates well With the advertising messages
      of high—profile cancer centers. It overestimates the curative potential of treatments for most cancers, something we would all like to believe in. And it
      propagates the myth that everyone has the potential to be a survivor—even as, ironically, survivorship against the odds requires the deaths of others.

      This Armstrong story comes with real social costs for many people surviving with and dying of cancer. Mixiam Engelberg’s graphic novel, like so many cancer narratives, ends abruptly with the recurrence of her metastatic disease and her subsequent death. One prominent page other book has a cartoon with her holding a placard stating, “Lance had a different cancer,” in response to her friends’ and colleagues’ comparison of her With Armstrong and their terrifying denial of her actual situation.6 So, While many cancer survivors consider Armstrong an icon and inspiration, others feel that he is misrepresentative of the
      disease. He at once gives them impossible standards of survivorship while at
      the same time building his heroism on the high death rates of other cancers.

      The American Century Investments advertisement summons the reader
      to “Put Your Lance Face On.” After gazing into the close—up image of a determined looking Armstrong and thinking quietly to oneself, “What the fuck?”
      one reads that “putting on a Lance face” “means taking responsibility for your
      future. . . . It means staying focused and determined in the face of challenges.
      When it comes to investing . . .” This ad is about Lance the Cyclist, sure; it

      175

      is also about Lance the Cancer Survivor. Control over one’s future h
      together the common thread of cancer survival, Tour de France victor Olds
      smart investing. But all this folds into the tiny hedge at the bottom of tfieand
      Past performance is no guarantee of future results . . . it is possible to lad:
      money by investing.” Even the Lance Face can see only so far into the fumrose

      ’This warning, necessary by law, echoes a skill essential to living in cae:
      talism. In heij study of market traders, Caitlyn Zaloom finds that “a tradJ 1.
      must learn to manage both his own engagements with risk and the ph 31 Z
      sensations and social stakes that accompany the highs and lows of wignc
      and losing. . . . Aggressive risk taking is established and sustained by routiIlTig
      zation and bureaucracy; it is not an escape from it.”7 The conflation of Arm—
      strong as athlete and cancer survivor in this ad offers the perfect personifica-
      tion of market investing, since the healthy functioning of a capitalist orde;
      requires a valorization of focused determination and responsibility for one’s
      future. By now a truism, liberal economic and political ideals require citi—
      zens to place themselves within a particular masochistic relationship to time
      What else but an ethos of deferred gratification would allow such retirement
      plans to remain solvent?

      As offensive as this ad is in its use of disease to create business, Ann.
      Strong’s story constitutes a culturally acceptable version of courage, cancer
      and survival that serves to comfort a population With increasing cancer rates,
      and the ad puts to use and propagates these notions of survivorship. As one:
      person wrote about giving Armstrong’s autobiography to her mother as she
      was dying of cancer, “I wanted her to be a courageous ‘surVivor’ too. I think
      we find it less creepy or at least difficult When people assume the role of sur-
      vivor, where they pretend they’re going to live an easy and long life.”8

      You can be angry at cancer; you can battle cancer. One campaign under-
      written by a company that builds radiation technology even allows people to
      write letters to cancer. But to be angry at the culture that produces the dis-
      ease and disavows it as a horrible death is to be a poor sport, to not live up to
      the expectations of the good battle and the good death witnessed everywhere
      in cancer obituaries. A bad attitude of this genre certainly will never enable
      you to become an exceptional patient. It’s as though a death threat blackmails
      cancer anger and frustration. But more astonishing still is the way in which
      this “poor sport” characterization carries over even into other cancer events.

      There is nothing wrong With having fun while making money. As one
      under—forty person who has been living in the cancer complex for over tWO
      decades said, “A fundraiser is where you invite people to a big fun event,
      serve great drinks, and do everything oossible for them not to think about

      176

      cancer.”You do want people to feel good and strong so that they will open
      their wallets, but this humanitarian charity model (“Swim for women With
      cancerl”) obscures the politics and paradoxes of such divisions. As one per—
      son organizing a fundraiser for her particular and rare cancer said as she
      thought about asking her doctors to attend her event, “They’ve made enough
      money off my cancer, they could pay some back” I signed on as the mixolo—
      gist for the event and spent several hours designing circus—themed drinks

      with little cotton candy garnishes.

      Time and Accumulationv

      Armstrong’s class, gender, and curable cancer allow his iconic status to
      overshadow the simple fact that cancer can completely destroy your financial
      savings and your family’s future. Sixty percent of personal bankruptcies in
      the United States result from the high cost of health care.11 This news, won—
      derful for people working in the healthcare industry since many people wifl
      pay anything for medical goods and services, means that cancer can be a
      long, expensive disease, paid for over generations.

      When one’s financial planner asks, semi—ironically, how long you plan to
      five, he calls up the paradox of survivorship. Middle— and upper—class Ameri—
      cans are asked to plan for an assumed longevity, and to be sure, a properly
      planned life span combined With a little luck comes with its rewards. But in
      times of trouble, the language of financial service starts to show cracks, even
      for healthy youngish people. The other day, When interviewing a Fidelity rep—
      resentative about my decreasing retirement account, the representative kept
      using the phrase “as your retirement plan grows.” When I pointed out that it
      had, in fact, shrunk by 45 percent, he just stared at me blanldy.‘ When, as an
      experiment, I asked him about people who don’t make it to the age of sixty-
      five, he pleaded, “You really need to think about it as a retirement plan.”

      No matter how we are interpellated to think about these accounts, non—
      normative life spans tell us about the ways that capitalist notions of time and
      accumulation work both economically and culturally. Many kinds of eco—
      nomic benefits, for example, are based in an implied life span: you work now,
      and we’ll pay you later. Social Security benefits are granted on the basis of
      how much you have put into the system over the years, and they last until
      you or your survivors are no longer eligible. Middle-class jobs often include
      not only salaries, but what are known as “deferred payments.” Pensions fall
      into this category, as do penalty—free retirement savings, and the benefit some
      academics get of partial payment of their children’s tuition.

      177

      If you croak, some of these contributions may revert back to your estate;
      others may be disbursed to qualifying survivors; others Will be recycled into
      the plans that will pay for the education of your colleagues’ children. As With
      any insurance policy, such calculations require that the state or the employer
      offer salary packages in the form of a financial hedge on your mortality and
      calculate the averages over the Whole workforce. Payments for those Who
      get old depend on the fact that some will die young. It’s not personal; it’s
      statistical. ‘

      Actually, I take that back. I guess there is not much that is more per50na1
      than your sex life, and if
      you are heterosexual and married—that is, if you say
      you are sleeping with one person only and that person is of the opposite sex
      and over a certain age—your cancer card Will play more lucratively. If you
      fit these criteria, you may be able to pass on these benefits and enable your
      loved ones to pay off some of your medical debts or provide a way toward
      a more comfortable life in (and sometimes because of) your absence. The
      survivorship of a spouse is a state—endowed right, enabled in the form of a
      cash benefit and various forms of tax relief. A husband’s or Wife’s death will
      enable his or her spouse to receive Social Security checks for decades. This
      cash enables a sort of proxy—survival by fulfilling your responsibility toward
      the support of your spouse and possibly the support of your children.

      This is precisely how one person explained to me his reasoning behind
      a recent change of genders: he can now legally have a Wife, legally bring her
      into the country, and legally offer her the protections of Social Security. For
      the same reasons, my lawyer advised me to marry a man, so that my hus-
      band could give the survivor—cash to my girlfriend. For the same reasonS,
      my mother was bummed out When I turned out not to be straight. Health is
      social and institutional as well as physical. Capital and family legitimate and
      live through each other, in some sense rendering each other immortal.12

      Social Security might be seen as ensuring that those Who do not conform
      to its measures of social legitimacy—people with forms of support that do
      not fall into the marriage category—are not given the forms of security into
      Which they are asked to pay while they live. Straight marriage presents a form
      of cultural longevity for the institution of marriage, and the labor of those
      who cannot partake in such survivorship literally underwrites the security of
      the individuals who can.13

      Historians of marriage have documented how ideas about the well—being
      of children led to these forms of social support. But take a closer look, and
      you will see that it’s only some children who benefit from these protective
      policies. Here’s an example. My employer offers a housing benefit that gives

      178

      some employees financial assistance in purchasing a house. It also describes
      death as a “severed relationship.” The relationship between my employer and
      an employee of the university can pass through a surviving partner—they
      included same—seX couples in their benefits plan in 1992, alb eit as taxable ben—
      efits rather than the untaxed benefits that straight people receive#such that
      a surviving partner may continue to live in a house purchased with the help
      of this fringe benefit. However, if an employee has children and no partner,
      the relationship is severed and the children are “SOL” (shit out of luck); they
      must sell the house no matter what the market is like and return the down
      payment loan to the employer. The debt cycles of illness and the early deaths
      of a parent are thus differently borne out through what counts as legitimate
      survival, thus reinforcing and rewarding normative social structures.

      But more important to my argument here, these retirement and Social
      Security benefits offer one means by which the terms of life span come to
      be taken for granted by the middle class in the United States. They make life
      span into a financial and moral calling, albeit one that the state will be will—
      ing to partially subsidize in the event of the deaths of the citizens who fulfill
      its principles of economic and sexual responsibility

      All this rests on a premise critical to economies in America: time and
      accumulation go together. You need the former to get the latter, and you have
      more smfi as you get older. No wonder people want to freeze themselves.
      Seriously. Cryonics offers an obvious strategy to maximize capitalist accu—
      mulation. On my salary, I’ll be able to pay for my kids’ college tuition in one
      hundred and fifty years. If I could freeze myself and my daughters and let
      my savings grow over that time, then come back to life after all the work of
      accumulation has been done for me, well, I could take full advantage of both
      the deferral and the gratification.” This may sound ludicrous, but it’s basi-
      cally the next step of what is already happening; people already freeze their
      eggs and sperm in order to maintain their fertility to a point at Which they
      have gained the sort of financial security that time and accumulation (are
      supposed to) bring.

      While cryonics suspends biological life as capitalism proliferates, uncon-
      trollably duplicating cells work to immobilize biological life. Cancer paro-
      dies excess. It could not be farther from the metaphors of an external enemy
      attacking the body imagined by visions of targeted chemotherapy, the broad
      political imaginary of the war on cancer, or the trope of the courageously
      battling and graciously accepting patient. If wealth rots the soul, accumulat-
      ing tumors rot the host. It just grows, sometimes as a tumor you should have
      noticed but didn’t, sometimes as a tumor you can’t help but notice but can’t

      179

      remove. It may just live there; you may touch it each day. It may disappear 0r ‘-
      it may wrap its way around your tongue. Either way, its changing size may 7’,
      make it seem living or dying. It inhabits a competing version of time, not ,
      yours, to which such things as savings and retirement are supposed to cor. ’

      relate, but its own, to which such words as “a o tosis” and “runawa ” ,
      Y aCCrue.

      These versions of competing time reveal a lot about life spans in capitalism ,

      Conclusion

      Alas, the Lance Face aims not toward the growing demographic of cancer

      survivors whose bodies experience the fissures of the immortal pretensions of :

      economic time. Unlike manypeople who calculate their odds and cash out their

      retirement policies after diagnosis, or the friends of mine Who told me thatI L
      was the inspiration for them to live in the moment and renovate their home, or ~
      those ads that regularly appear in Cure magazine that offer to buy the life insux. 3
      ance policies of people with cancer in exchange for a percentage, the Lance ad;

      replays tiresome injunctions to future thinking, saving, and determination. :
      The ad encourages the potential consumer of banking products to workin the ;
      broader interests of capital. Simply put, the ad uses cancer for its own ends and ’

      is able to do so because of the way that cancer rhetorics have so unquestion—
      ingly oyerlapped With notions of progress and accumulation in capitalism.

      The cultural management of cancer terror follows to some extent the,
      Cold War strategies of damping nuclear terror. You may have wondered why

      the phrase “you are the bomb” presents itself as something of a compliment

      Whereas, in a romantic situation, the comment “you are the gas chamber”,
      may not go over that well. Anthropologist Joseph Masco has analyzed how

      Americans didn’t just turn the threat of nuclear annihilation into atomic

      cafes, bikinis, and B—sz cocktails on their own; we were taught to survive

      through specific governmental programs sought to manage the emotional
      politics of the bomb. Nuclear terror, as a paralyzing emotion, was converted
      into nuclear fear, “an affective state that would allow citizens to function
      in a time of crisis.”5 Such emotional management required a two-pronged
      approach. First, citizens were asked to “take responsibility for their own
      survival.” Second, enemy status was displaced from nuclear war onto public
      panic, such that the main threat was perceived as inappropriate reactions to‘
      detonation, rather than to the bomb itself. Even With increased bomb testing
      and its release of radiation into the atmosphere, the discovery of high levels
      of radiation in American flesh and teeth, and the corresponding increasing
      of cancer rates along fallout routes and among nuclear workers, the nuclear

      180

      threat was always constituted as coming from the outside, never as the pre-
      dictable and calculated risk of American nuclear programs. In that sense, the
      forms of emotional management that resulted from military technologies
      underpin cancer culture in the United States as much as the technologies of
      Chemotherapy and radiation do.

      To be sure, the increasing use of the language of survivorship in main—
      stream cancer culture offers a welcome change from the days when people
      with cancer were asked to use plastic cutlery so as not to infect those around
      them or were not told of their diagnoses in order to protect them. Now, the
      Person who survives cancer walks a fine line between courage and deception,
      horror and the quotidian, in ensuring that American models of health retain
      their normative status. Lance Armstrong offers the perfect venue for such
      disavowals, as he currently rises as if in a second coming, high above the
      Nike building at Union Square in San Francisco and other American cities,
      his Lance face in perfect shape, With another sufficiently vague, sportsmanly
      tag line: “Hope Rides Again.”

      What if, instead of some broad and grammatically, if not afiectiyely,
      meaningless aim as marching and riding “for hope,” fundraisers attempted to
      ban any one of the thousands of known carcinogens in legal use? What if we
      walked, ran, swam, rode not for hope, but against PAH, MTBE, EPA or any
      other common carcinogen? Such an effort would require naming. the prob—
      lem rather than the symptom, and recognizing how we are all implicated. It

      would require that we invest in cancer culture not as a node of sentimentality
      but as a basic fact of American life.

      NOTES

      1. Bernie S. Siegel, Love, Medicine, and Miracles: Lessons Learned about Ser—Healing
      from a Surgeon’s Experience with Exceptional Patients (New York: Harper and Row, 1986).

      2. Oxford English Dictionary, 2nd ed., s.v. “Shame.”

      3. Again, I think it is easier to speak facetiously from the position of having a non—
      metastatic diagnosis.

      4. Stephen Ohlemachter, “US Slipping in Life Expectancy Rankings,” Wash—
      ington Post, August 12, 2007, httpzllwww.washingtonpost.com/wp—dyn/content/arti-
      c1e/2007/ 08/12/AR2007081200113html.

      5. See Charles E. Rosenberg, “The Tyranny of Diagnosis: Specific Entities and Indi—
      vidual Experience,” The Milbank Quarterly 80, no. 2 (June 2002): 237—60.

      6. Miriam Engelberg, Cancer Made Me a shallower Person (New York: Harper,
      2006).

      7. Caitlin Zaloom, “The Productive Life of Risk,” Cultural Anthropology 19, no. 3
      (Angust 2004): 365.

      181

      8. Personal correspondence with author, April 10, 2008.

      9. Personal correspondence with author, March 15, 2009.

      10. Personal correspondence with author, April 11, 2009.

      11. See David U. Himmelstein, Deborah Thorne, Elizabeth Warren, and Steflie W001-
      handler, “Medical Bankruptcy in the United States, 2007: Results of a National Study)” "me
      American Journal ofMedicz’ne 122, no. 8 (August 2009): 741—46. -

      12. These structures carry invisible costs even for straight people Who believe
      themselves to be outside of these cycles. Think for example of the shooting of Harvey
      Milk and George Moscone. The short sentence given to Dan White for the shooting is
      usually ascribed to the fact that, since Milk was queer, the judge believed that his life Was
      not worth much. Moscone Was considered collateral damage. See The Times of Harvey
      Milk, dir. Rob Epstein, 90 min, Black Sand Productions, 1984.

      13. This kind of structural attention to cultural institutions and actual care are
      understudied For example, When President Barack Obama made an exception to his i
      usual homophobic platform to call for allowing same-sex couples to be able to visit their
      partners in hospitals, he was making a way for partners to be able to love each other
      and to be able to share a deep experience. Advocacy and protection are huge parts of
      contemporary medical care. I have eome across hundreds of examples of this in my years
      of research. This aspect of contemporary medical care includes everything from making
      sure that medical records are transferred properly or read, that medical allergies are made
      known, that machinery is working, that people wash their hands and are given the proper
      doses of medication. Such bedside advocacy is an enormous, and understadiei part of
      healthcare provision.

      14. Tiffany Romain is working on an important dissertation on this subject in the
      Department of Anthropology at Stanford University.

      15. Joseph Masco, “Survival Is Your Business: Engineering Ruins and Affect in Nuclear
      America,” Cultural Anthropology 23, no. 2 (May 2008): 366.

      182

  • Siemens abandons cancer therapy project | WSWS
    http://www.wsws.org/articles/2012/feb2012/siem-f02.shtml

    The construction of the #cancer treatment centre in Kiel was begun in August 2008 and is nearing completion. The plan was to use the new precision methods of particle therapy in the Kiel centre to treat tumors in 3,000 patients per year, attracting patients from northern Germany and the Scandinavian countries.
    It has since been found, however, that the large-scale facility can only treat 1,000 patients per year, and not 3,000. With this number of patients, the operation of the facility is not economically viable for the consortium of bidders including Siemens, Bilfinger Berger and HSG Technical Service, which had set up the particle therapy center as a public private partnership project with an investment of €250 million.
    (...)
    Before pulling out of the facility in Kiel, Siemens had already withdrawn from a project in July 2011 for a similar particle therapy facility in Marburg.

    #santé via @reka

  • AFP: Lebanon pilots call strike over cancer colleague
    http://www.google.com/hostednews/afp/article/ALeqM5gxPRJ8Jw7v-vnE88qmDoS2bzN46w?docId=CNG.b3f711e12539c6d91997e2a387ffbd8

    Pilots at Lebanon’s national carrier, Middle East Airlines (MEA), on Monday overwhelmingly voted in favour of a 48-hour strike in protest at the dismissal of a colleague undergoing cancer treatment.
    Captain Fadi Khalil, head of the pilots’ union, told AFP that the work stoppage from 2000 GMT on Monday to 2000 GMT Wednesday covered all flights.

    “We have a colleague, a captain who has served MEA for 38 years, and as soon as he went on sick leave, they terminated his contract,” Khalil said.