Bedside Manners

As many in the U.S. anticipate October “going pink” for Breast Cancer Awareness Month, I’m honored to feature a guest post by Gayle A. Sulik MA, PhD, Research Associate at the University at Albany (SUNY) and founder of the Breast Cancer Consortium, an international partnership committed to energizing the scientific and public discourse about breast cancer and to promoting collaborative initiatives.  She was a 2008 Fellow of the National Endowment for the Humanities and recently won the 2013 Sociologists for Women in Society Feminist Lecturer Award for her book, Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health (Oxford University Press).*


I too used to secretly look forward to October, when I would drape myself in pride with all manner of garish pink, survivor-emblemed merchandise and take my place in the Survivors circle whilst bopping out to “We Are Family” or whatever the cheesy designated anthem was for that year, at one of the many breast cancer fundraising walks.

But I’m not doing it this year or ever again. It’s just a load of bollocks and a great excuse for companies to market their products to the well-meaning consumer in the guise of “Breast Cancer Awareness” when all it really boils down to is profiteering at the expense of real people really suffering and really dying from this insidious disease.

— Rachel Cheetham Moro,
The Cancer Culture Chronicles, Sep. 19, 2009

Rachel Cheetham Moro used to write a lot about the bollocks of breast cancer on her blog, The Cancer Culture Chronicles, which she published from June 2009 until her death, from metastatic breast cancer, in February 2012.

Though Rachel’s blog posts covered an array of topics about her experiences with breast cancer and the curiosities of pink ribbon culture, she was particularly savvy in her descriptions of the pink-themed marketplace where strength, hope and courage come in the form of t-shirts, chocolates, figurines, and narratives of idealized survivorship. With snark-filled accuracy, Rachel catalogued how merchandisers blithely use the widespread desire for cure(s) to lull well meaning supporters into a state of consumptive bliss. Shopping for a cure never felt so good. If only “cure” were part of the transaction.

As a woman living with terminal cancer, Rachel knew that a “cure” for breast cancer was a figment of the collective imagination. Not only for her, but for all of those living with metastasis (when cancer spreads to distant organs of the body). Rachel had been diagnosed with breast cancer on three separate occasions. She had the typical array of treatments and brief periods of remission, but the third diagnosis changed  everything. There was no cure. There would be no cure. It was simply (and complicatedly) a matter of living with breast cancer until dying from breast cancer.

There are rare cases of people with metastasis who live twenty years, and no one knows which statistics will apply to them in the end. But the truth of the matter, which Rachel knew to her core, was that she would not survive this disease. What’s more, the treatments that were geared toward keeping her cancer at bay ended up damaging nerves, organs, and limbs until she had difficulty managing routine aspects of life. Walking, eating, cooking, typing, breathing. Activities many of us take for granted became everyday obstacles.

None of this stopped Rachel. She kept doing what she could. At the age of 41, she managed to retrofit her house to accommodate a limited range of motion and the inability to use her dominant arm. She cooked one-handed, henpecked her keyboard and, prepared for a day when she might be able to drive again, had hand controls installed in her vehicle. Rachel learned how to live life within the continually narrowing confines of patient-hood.

And it was patient-hood NOT survivorship that framed Rachel’s life. “I’m a cancer patient, Gayle. It’s what I do now. I spend hours in waiting rooms and chemo-chairs, hours on the phone to manage my health care, hours doing things that used to take me minutes. Being a cancer patient has become a job. It’s become my life. I don’t want it to be, but I don’t have a choice.”

During one of my visits with Rachel, I took her to a chemotherapy session. On the way home she directed me to a steep and narrow road that snaked in and around the Highlands of New Jersey. We ended up at a property nestled in the hills overlooking the Atlantic Ocean. Rachel wanted me to see her “dream house.” There it was. She had grown up near the ocean in Perth, Australia. Sand and saltwater were in her blood. Rachel smiled when we drove up to the house. Then she told me the truth. This was a pretend dream house. “The devastation of cancer,” she said, “is that it not only takes your life, it steals your dreams.” Then in a matter-of-fact tone Rachel repeated the statement. “That’s what cancer does, Gayle, it steals your dreams.”

I went silent. A sense of dread was a dead weight around my heart. They were my dreams too. Not the house by the ocean. The dream of having Rachel in my life.

For Rachel and me, our time together had been a full but short 16 months. We didn’t find each other until October 2010 when she emailed me after reading my book, “Pink Ribbon Blues.” We became fast friends and collaborators. Rachel was a rabble-rouser, an activist — a soul sister who got what I was about. She believed as strongly as I did that pink hype was not the answer to the breast cancer problem. It was in fact getting in the way. Profit motives and branding priorities led to a distortion of medical information, the misallocation of funds, and an overall misrepresentation of the disease, especially for those who were dying from it. These truths, which rarely made the headlines, infuriated both of us. We were committed to change. This reality swirled around in my head in that brief moment of silence.

Then I asked Rachel, “What gets you through the day if you no longer have your dreams?” Without pause she said, “You.” “You do, Gayle. And my beloved…and Sarah… my cyber-sisters…Newman [Rachel’s dog]…and screaming about this pink hypocrisy. It’s going to change, Gayle. The walls are going to tumble down. It’s just a matter of time.”

I left New Jersey after a few days and returned to Texas. We continued our work via email, phone, Skype, and other social media. Ten weeks later Rachel was in the hospital. Cancer had made its way to her spine, and her brain. It was the same week Susan G. Komen for the Cure announced its now infamous decision to stop giving grants to Planned Parenthood. The same week I was in Florida for an academic conference. As I learned what was happening to Rachel, the Komen story began to unfold.

Komen’s deceptions, misrepresentations, abuses of the public trust, and failures of corporate governance surrounding the Planned Parenthood scandal opened a proverbial can of worms. New investigations surfaced about Komen’s revenues and budget allocations, branding initiatives, questionable corporate partnerships, legal actions against other smaller nonprofits, distortions of scientific data, and long-standing partisan bias. None of this was surprising to those of us who had been working to reveal Komen’s shenanigans long before the Planned Parenthood debacle stirred the public interest. But it was news to many others. Normally Rachel and I would have been sending rapid-fire messages about each new public reveal, in constant communication with the “cancer rebels” to spur social commentary. Not this time.

There was a startling silence as Rachel went in and out of consciousness, her voice missing from one of the most crucial and catalytic public debates to date about Komen’s role in the breast cancer industry. I sent her messages. Reported updates. Did Rachel know that Komen’s true colors were finally coming to light? That her personal efforts to reveal the truth about breast cancer were having an impact? Her beloved Anthony assured me that she did.

My partner in activism died on February 6th, 2012. I hope that Rachel was right, that it’s only a matter of time until those pink walls come tumbling down. Maybe then, there will be a chance of getting closer to that elusive cure.


*The 2012 edition includes a new Introduction about the Komen for the Cure/Planned Parenthood controversy and a color insert of images of, and reactions to, the pinking of breast cancer. For more information please visit Gayle Sulik’s website at and her blog at

** Rachel Cheetham Moro’s blog, The Cancer Culture Chronicles, has been compiled and edited by her mother Mandy Cheetham and her friend Sarah Horton. The book contains all of Rachel’s blog posts in their entirety, with notes, resources and tributes. Available in October 2012, this is a 5×8 hardback book, 384 pages and available at cost from, price $30.95 (£21.50) plus shipping.

Today’s extra edition of the monthly “Bedside Manners” column features a follow-up post from one of our past guest authors: Chloe E. Bird is a senior sociologist at the nonprofit, nonpartisan RAND Corporation and co-author of Gender and Health: The Effects of Constrained Choices and Social Policies (Cambridge University Press).


In light of the current debate over women’s reproductive rights and care, it is increasingly clear that the benefits of the Patient Protection and Affordable Care Act (ACA) for access to comprehensive health care will not accrue equally to women across the country. Simply put: There is more agreement on what must be included in comprehensive health care for men than on whether and to what extent contraceptive and reproductive services must be included in comprehensive health care for women.

While it has long been recognized that comprehensive care for men includes sexual and reproductive health, the same has not been true for women. For example, women’s health insurance plans have typically allowed exclusions in this area even for pregnancy, and even when it is not a “preexisting condition”; indeed, there are no comparable accepted options for excluding entire aspects of health care for men while providing them for women.

Yet although the ACA assures women access to primary care and many reproductive services without copays, the debate over reproductive services continues. Recent political discussions on access have typically not included discussion of increases in women’s education, employment and career continuity attributable to contraception.

In the context of this debate, the Timely Access to Birth Control bill (AB 2348), which has been approved by the state legislature and is now awaiting Governor Brown’s signature, may appear to some to be a luxury that California can ill afford. But the reality is that over the mid to long run, AB 2348 would very likely save the state a significant amount of money. The bill allows registered nurses to dispense highly reliable hormonal contraceptives, including the pill. If enacted, doctors and nurse practitioners would be freed up to focus on more complex patient visits. If passed, the bill would increase women’s access to reliable contraceptives and reduce the costs of delivering that care.

In a Mother’s Day piece for Ms. Magazine Online, I pointed to the savings contraception generates for employers, insurers, and taxpayers. A public dollar invested in contraception saves roughly four dollars in Medicaid expenditures—or $5.1 billion in 2008—not to mention the broader health, social and economic benefits. Moreover, a 2010 study in California of a Medicaid family planning program found that every dollar spent saved the public sector over nine dollars (PDF) in averted costs for public health and welfare over five years. Rather than getting caught up in the national political debate over reproductive health coverage, California legislators should consider the significant cost savings as well as the social and economic benefits of improving timely access to reliable contraception.

On the national front, the goal of the ACA is to expand access to healthcare for Americans, especially those who currently lack health insurance; but the law also prioritizes improvements in the quality of care and reductions in costs. As we look for ways to provide efficient, high-quality, and cost-effective health care to more Americans, we can’t afford to ignore women’s health issues, including reproductive health care and the cost savings that contraceptive access provides.


Cross-posted with the author’s permission from RAND’s blog

Recent events inspired this guest post authored by sociologist Michael Kimmel, author of Guyland: The Perilous World Where Boys Become Men, The Guy’s Guide to Feminism, and Manhood in America. Kimmel teaches sociology at SUNY Stony Brook and is one of the most influential researchers and writers on topics of men and masculinities . Reprinted with Kimmel’s permission from today’s Huffington Post, the author calls out not only Todd Akin but also Daniel Tosh for their recent misogynistic actions, as well as offers readers a larger critique of how rape is discussed in our culture.


You have to pinch yourself sometimes to remind yourself that it’s 2012 and we still don’t know how to talk about rape in this country. Who would have thought that after half a century of feminist activism — and millennia of trying to understand the horrifying personal trauma of rape — we’d be discussing it as if we hadn’t a clue.

Okay, that’s a not quite true. When I say “we” — as in “we haven’t a clue” — that’s a little vague. So let me clarify. When I say “we,” I mean the half of the population to which I happen to belong. My gender. Men. Just consider the gender of each of these recent examples:

• In recent days, we’ve had a U.S. Congressman candidate draw distinctions that are so mind-numbingly wrongheaded and so politically reprehensible that even his own party is calling for him to drop out of his U.S. Senate race (where he is leading);

• In recent weeks, we’ve had one of the more curious debates about whether rape jokes can be funny;

• And over the past couple of years, the word “rape” has entered our vocabulary as a metaphor.

Each one reveals a fundamental misunderstanding about the singular horror of rape.

Todd Akin and “legitimate rape”

In trying to explain his opposition to abortion — even in cases of rape — Rep. Todd Akin observed that victims of “legitimate rape” cannot get pregnant because their bodies will shut down and prevent the sperm from fertilizing her egg. That is, he seems to believe that women’s bodies have a kind of magical, or God-given, ability to distinguish lovers’ sperm from rapists’ sperm, and to “know” which ones should be allowed to fertilize the egg.

Of course, this reveals a spectacular ignorance of women’s bodies — but what else did you expect from a right-wing anti-woman legislator? (The fertility rate for rape victims is exactly the same 5 percent that it is for women who have consensual sex.) But what is so offensive is less what he says about women’s bodies, and more what it implies about rape in the first place. By drawing attention to “legitimate” rape, Akin implies that “other” rapes are not legitimate — i.e., not rapes at all. Legitimate rapes are the equivalent of what others call “real” rape — a stranger, using force, preferably with a weapon, surprises the victim. All “other” rapes — like date rape, marital rape, acquaintance rape, child rape, systematic rape by soldiers, rape as a form of ethnic cleansing (where the actual purpose is to impregnate) — aren’t really rapes at all. This would exclude, what, about 95 percent of all rapes worldwide?

By linking the criteria for labeling some assault as rape to the possibility of pregnancy, Akin in effect blames impregnated women’s bodies for failing to slam that cervix door shut on those illegitimate sperm. Their bodies having failed them, why, then, he asks, should the state sanction a “murder” (abortion) that their own bodies didn’t sanction? This isn’t just lunacy on the scale ofMonty Python’s famous inquiry into the identity of witches, it’s a consistent ideological position against women’s conscious and deliberate ability to make conscious decisions about her body. The body speaks; women’s voices are silenced.

Rape as Humor

Last month, the comedian Daniel Tosh attempted to silence a heckler at the Laugh Factory, saying, “Wouldn’t it be funny if that girl got raped by, like, five guys right now? Like right now?” This has been a standard theme at comedy clubs for a while now. Hordes of fellow comedians jumped in to defend Tosh. Comedy, they argued, is designed to push the envelope, to make really tragic and horrible things funny.

Such claims are, of course, disingenuous. Have you heard the German comedian’s “Two Jews walk into a bar” joke? Neither have I. How about the racist comedian joke about lynching? Only on White Supremacist websites (and never in a public club). The question isn’t whether or not rape jokes “push the envelope.” It’s which envelope it’s pushing, and in which direction.

Humor has often been a weapon of the weak, a way for those who are marginalized to get even with those who are in power. This is the standard explanation for the large number of Jewish and black comedians. And their takedowns of the rich, white, Christian are seen as evening the score: “they” get all the power and wealth, and we get to make fun of them.

But when the powerful make fun of the less powerful, the tables are not turned; inequality is magnified. While it’s still not acceptable for white comedians to use racist humor (and when they do, they are instantly sanctioned, as was Michael Richards), but it’s suddenly open season on women and gay people. Ask Tracy Morgan.

In a sense, though, Tosh’s casual misogyny offered a rare glimpse inside the male-supremacist mind. Tosh doesn’t defend rape as just a “date gone wrong” or a “girl who changed her mind afterwards,” equally vile and pernicious framings. No, he is clear: rape is punishment. Punishment for what? For heckling him. That is: for having a voice.

Rape as Metaphor

Recently, my adolescent son told me he’s started hearing the word “rape: as a synonym for defeating your opponent badly in sports, or besting them in a rap competition. As in, “The Yankees raped the Red Sox” or, “Dude, that guy totally raped you” in the high school debate.

Using rape as a metaphor dilutes its power, distracts us from the specificity of the actual act. You got raped? Me too! I totally got raped in that math quiz.

In an interview some years ago, Elie Wiesel cringed at the use of the word “Holocaust” as a metaphor for hatred, or for murder in general. This was not hatred, not just murder, Wiesel argues.

“Hate means a pogrom, it’s an explosion, but during the War it was scientific, it was a kind of industry. They had industries and all they produced was death. Had there been hate, the laboratories would have exploded.”

Wiesel made clear that it’s not a metaphor: it is in its specificity that its power resides.

Rape is not a verbal put-down; it’s a corporeal invasion. It’s not an athletic defeat; it’s the violation of a body’s integrity, the death of a self. All equivalences are false equivalences.

It’s not a metaphor, it’s not a joke, and it’s not to be parsed as legitimate. It’s an individual act of violence. To believe that you can change the meaning of a word by turning it into a metaphor or a joke is the essence of male entitlement. It is an act of silencing, both the individual and all women. The arrogance of turning it into a metaphor, making it a joke — this is how that silencing happens.

And the good news — if any is to be taken here — is, of course, that it hasn’t worked. Women have responded, noisily and angrily, to these efforts at silencing.

Maybe “we” ought to shut up and just listen?

I’m happy to bring you this guest post co-authored by two researchers at the nonprofit, nonpartisan RAND Corporation: Chloe E. Bird, senior sociologist and co-author of Gender and Health: The Effects of Constrained Choices and Social Policies (Cambridge University Press, 2008), and Tamara Dubowitz, policy researcher. In this post they discuss recent studies which examine the impact of neighborhood environments on health and health disparities.


If you had good options about what to eat but made bad choices and became obese, then the fault would be yours. But, what happens when you don’t have good options?

That’s the problem in America today – being overweight is not all your fault. You don’t make the decisions to put transfats, high-fructose corn syrup and excess salt in your food, or unhealthy snacks in the vending machine at work. You don’t dictate that the equivalent of 54 sugar cubes get put into an extra-large soda. These are so-called constrained choices – ones you don’t get to make. Yet, you live with the consequences.

We believe it is time to consider who determines the options for us and what can be done to put better ones on the table. We can’t all afford to buy only organic foods or even have access to them. And, we probably don’t make it a pastime to follow the latest research on nutrition. But, we can take a moment to think before we order a second soda.

And, we can choose to call on those who determine the options to shoulder part of the responsibility for America’s obesity epidemic and to stop the name-calling – like labeling medical researchers “food nannies” when they ask restaurants to deliver sensible portions, priced right. We need to hold vending-machine companies and their managers to account if they stock only junk food in those little compartments.

Consider a few statistics. The latest figures indicate that two of three adults and one of three children and adolescents in the United States are overweight or obese. The impending health and economic consequences are staggering. According to the Institute of Medicine, the medical costs alone of obesity-related diseases and disabilities exceed $190 billion a year. These costs comprise more than 20 percent of national health care spending. The number keeps rising. Want your health care costs to spike further? Then, keep eating the constrained choices that are not healthy.

RAND research, using data from the Women’s Health Initiative study, found that living where there is a higher density of fast food outlets is associated with higher blood pressure and risk of obesity; while, a greater density of grocery stores is associated with lower blood pressure and lower risk of obesity. These relationships hold even after taking into account women’s characteristics and socioeconomic status of their residential neighborhoods.  In other words, where you live can affect your weight and your health.

Moreover, another recent RAND study found that 96% of main entrées at all restaurants studied—including delivery, family style, upscale, fast food, buffet, and fast casual—exceed the daily limits for calories, fat, saturated fat, and sodium recommended by the U.S. Department of Agriculture.

Policy approaches to reduce obesity are not magic bullets. If we want to reverse the obesity epidemic, then we need environments which assure that we have good food options and the opportunity to choose them.

We will be more successful at stemming the growing tide of obesity and improving our own health if everyone accepts their share of responsibility for the obesity epidemic. We need to ask our favorite restaurants, the food vendors near where we work, even grocery stores to give us better options. We can always ignore them, if we wish, but then that’s our choice. Right now, too many bad choices are being made for us.


Cross-posted on RAND’s blog


On this historic day, the US Supreme Court’s ruling on health care is being hailed as “a victory for all Americans” – but will all Americans benefit equally from the new health care law signed into law by President Barack Obama? No, not those, like Obama, who are male.

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While I believe that the Affordable Care Act (ACA) will improve the overall health of the nation, particularly for women and the underserved, some health care disparities remain. June is Men’s Health Month, so I dedicate this month’s column to an under-recognized inequity which seems likely to continue under the ACA: insurance coverage for men’s annual sexual and reproductive health exams. While typical insurance coverage addresses annual general health exams for both male and female patients, the norm is that only female patients are offered coverage for annual gynecological exams. In addition, there is yet to be a national standard for what a men’s annual sexual health exam should include, let alone a social norm for teen boys and men to seek out this type of exam. This may help explain why the Centers for Disease Control and Prevention reports that “Less than half of people who should be screened receive recommended STD screening services.”

The ACA’s list of “Covered Preventive Services for Adults” includes screenings for only two sexually transmitted infections (STIs): “HIV screening for all adults at higher risk” and “Syphilis screening for all adults at higher risk.” They do include “Sexually Transmitted Infection (STI) prevention counseling for adults at higher risk,” and “Immunization” for the STIs Hepatitis B, Herpes and Human Papillomavirus (HPV). All sexually active boys and men are potentially at risk for contracting a wide range of STIs, including HIV: the interpretation of “higher risk” could keep many from receiving necessary care.

If you scroll down this page, you’ll find the longer list of “Covered Preventive Services for Women” which includes additional sexual and reproductive health care screenings related to breast cancer, cervical cancer, chlamydia, contraception, gonorrhea, plus extra screenings HIV and HPV.  This laudable list is capped off by “Well-woman visits” described as, “preventive care visit annually for adult women to obtain the recommended preventive services that are age and developmentally appropriate….” Why would a man not benefit from these types of services?

A google search for “well-man visits” turns up nothing on U.S. government websites and only one company’s description of their “Well Man Examination” policy: it includes only “Digital rectal exam; and Screening PSA test (age 40 or older).” Younger men could benefit from an examination for testicular cancer, “the most common cancer in American males between the ages of 15 and 34.” None of these tests are mandated under the ACA.

Looking again at government resources, the inequity jarring. In addition to having a website devoted to National Women’s Health Week in May, the U.S. Department of Health and Human Services also sponsors an Office on Women’s Health website.  If you’re on the homepage of the U.S. Department of Health and Human Services and search for “men’s health” you will not find a men’s health website.  However, their Office on Women’s Health website (somewhat ironically) features the U.S. government’s only resource webpage for men’s health, including a link to men’s sexual health. On this page, it focuses more on aging and sexual dysfunction, with only one small link to sexually transmitted infections. This “sexual health” page seems to patronize and condescend to men, doubting their abilities to care about and seek sexual health care:

“Sexual health is a source of concern for many men. Yet some men are not comfortable talking to their doctors about sex.” And, later on, “Remember that problems with sexual health are medical problems, and your doctor can help.”

If you live in King County, WA, then you might be in luck: their Public Health website features a fairly detailed description of “physical examinations for men.”  If you don’t feel comfortable seeking these examinations from your regular doctor, then check out Planned Parenthood: a national organization that provides men’s sexual health exams. While I’m not sure how many U.S. teen boys and men would think of Planned Parenthood clinics as their home base for sexual health care, U.S. health policymakers should look to them for guidance. Depending on the specific PP clinic, their services might include:

  • checkups for reproductive or sexual health problems
  • colon cancer screening
  • erectile dysfunction services, including education, exams, treatment, and referral
  • jock itch exam and treatment
  • male infertility screening and referral
  • premature ejaculation services, including education, exams, treatment, and referral
  • routine physical exams
  • testicular cancer screenings
  • prostate cancer screenings
  • urinary tract infections testing and treatment
  • vasectomy

U.S. men, where is your outrage? Where are the protests demanding equality in sexual and reproductive health services? Why is there no U.S. Office on Men’s Health? A little digging online unearthed the failed “Men’s Health Act of 2001” which articulated the need for an Office of Men’s Health. If this act is not a priority for today’s politicians, then I encourage you to do your part to raise awareness about the need for accessible, affordable and comprehensive men’s sexual and reproductive health care. All of us — men, women and children — will benefit from better men’s sexual health.

As a sexual health researcher, I have followed the saga of HPV (human papillomavirus) vaccination since the early 2000s. I’m posting this month’s column early to address three news stories that recently caught my attention – both for what they reported and also for what they left out:

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March 26, 2012: PRNewswire report on Harold zur Hausen’s remarks at the annual meeting of the Society of Gynecologic Oncology. Having won the 2008 Nobel Prize in Medicine for discovering the link between HPV and cervical cancer, zur Hausen kept the spotlight on cervical cancer when he advocated for HPV vaccination of young females and males in order to “eradicate cervical cancer.” While I advocated for non-sexist HPV vaccination policies back in a 2010 Ms. Magazine article, I was surprised by reports that zur Hausen favored male vaccination: “…if society were to vaccinate just one gender to prevent the spread of cervical-cancer causing HPV, it would be more effective to vaccinate just males.”  I found myself asking two questions: (1) Why base medical recommendations on heterosexist assumptions that girls/women only contract cancer-causing strains of HPV from male partners? (2) Why continue to narrowly focus on HPV as a cause of cervical cancer, when a growing body of research documents its role in a range of genital cancers as well as often fatal oral-throat cancers?

April 2, 2012: The New York Times offers a summary of a study published in the March issue of the British Medical Journal: the findings suggest that HPV vaccination “can significantly cut the likelihood of virus-related disease even among women who have had surgery for cervical cancer caused by HPV.” The strongest prevention effect – 64% reduction in risk – was for women who had the most serious kinds of cervical cancer. The article quotes Dr. Elmar A. Joura, associate professor of gynecology at the Medical University of Vienna: “Regardless of your age or your history, a vaccination can prevent new disease.” Key question not addressed by this article: why does the CDC have an upper-age limit of 26 years old for HPV vaccination? Last year, Canada raised their upper-age limit to 45 – how much longer will ‘older’ Americans have to wait?

April 4, 2012: Forbes article on “The Gardasil Problem” fails to address the full scope of HPV vaccination ‘problems.’ First, the author misleads readers into thinking that HPV-related oral-throat cancers are “a new form” – again, see not only the 2010 Ms. Magazine article but also the Oral Cancer Foundation’s thorough summary of the decades of research linking sexually-transmitted HPV to serious oral cancers.

The author also misstates the focus/bias of Merck’s original years of marketing Gardasil: “When it was introduced in 2006…Merck began an advertising push to raise awareness of the risks of HPV.” What ads did he see? I and other consumers of mainstream media were exposed to a series of commercials that referred to Gardasil as “the cervical cancer vaccine” and strategically obscured message about “HPV-related diseases”, never clarifying for viewers that HPV was, in fact, sexually transmitted.  While I offered a feminist critique of the branding and marketing of Gardasil in my 2008 book and several blog posts – trying to get the public to understand that “You don’t need to have a cervix to benefit from the cervical cancer vaccine” – Merck did not change to a focus on Gardasil as a STD vaccine until it received FDA approval for male vaccination…until profits depended upon bursting the bubble of the mythical cervical cancer vaccine.

Next, the author not only makes a heterosexist assumption but also unnecessarily demonizes oral sex on women as the ‘usual’ mode of transmission: “Usually transmitted when men perform oral sex on women, it can also spread through other forms of contact, perhaps even just kissing.”  If kissing can transmit the virus, the why is he so sure that most of men with HPV-related oral-throat cancers skipped ‘first base’ and went straight to ‘third base’? If, and this is a big ‘if’, clinical studies can verify unprotected oral sex as the primary mode of transmission, then why not offer readers a brief education on the vaccine-free ways to practice safer oral sex

Finally, the author unnecessarily dashes readers’ hopes for the near future: “tests that might well prove that [Gardasil] can prevent the new throat cancer strain would take at least 20 years, until the boys sampled actually became sexually active and then contracted the disease.” Why would these tests take 20 years? Does this author think that a boy who is vaccinated at age 12 will not perform oral sex until he’s 20+ years old? Where is the data to show it would take another ten years for HPV-related oral and throat cancers to develop?  In addition, the author fails to point readers towards the likely source of delay: a lack of interest by the makers of the two FDA-approved HPV vaccines.   

A 2010 article in the Journal of the National Cancer Institute not only clarifies the challenges of developing effective screening for oral HPV infections but also reports the truth about Merck’s failure to move forward with testing HPV vaccination as prevention of oral and throat cancers. Maura Gillison, M.D., Ph.D., a leading researcher on HPV-related head and neck cancers at Ohio State University in Columbus, explained why clinical trial plans were derailed in 2010: “We were 6 weeks from enrolling the first patient when I got an e-mail saying it was no longer in the interest of Merck to conduct the trial.” The article also quotes Pam Eisele, a Merck spokeswoman:

“The link between HPV infection and head and neck cancers continues to be an area of scientific interest for Merck; however, we currently do not have any plans to study the potential of Gardasil to prevent HPV-related oropharyngeal cancers. In 2008, we did conduct a small pilot study to assess our ability to obtain adequate and valid oropharyngeal samples. While the results of the pilot study were promising, due to competing research and business priorities we ultimately decided not to move ahead with an efficacy study at this time.”

Why is Forbes not asking for a more complete explanation of those “competing research and business priorities”?  We, the American public, should demand more funding find out how to prevent cancers which research shows to be on the rise and more fatal than cervical cancer in the U.S.

The one section of this Forbes article that some readers might find valuable is its summary of the data on the safety record of HPV vaccination.  However, as I’ve said before, I am not advocating that vaccination is the only way to reduce one’s risk of contracting cancer-causing strains of HPV.  Those who decide not to vaccinate themselves and/or their children need to learn the facts about HPV prevention, testing, diagnosis, and treatment: check out the American Social Health Association’s online HPV and Cervical Cancer Prevention Resource Center.

Gw/P welcomes Holly Grigg-Spall, a features journalist who writes for feminist blogs and whose work on the birth control pill has been cited in mainstream newspapers in the U.S. and U.K.

How many of us read the inserts included in a packet of pills? How many decide not to take the pills on the basis of the information enclosed?  The rapidly reeled-off list of side effects stated at the end of a televised advert for a new drug has more comedic value than serious consequence to most. If we do have doubts, many of us will rely on the reassurance of a doctor, and then take the pill anyway.File:Pillpacketopen.jpg

I recently wrote a piece for Ms. Magazine Blog outlining the FDA reappraisal of top-selling oral contraceptives Yaz and Yasmin. It was discovered that drugs such as these containing drospirenone held a significantly higher risk of causing blood clots. Research by the FDA and other bodies suggested this conclusion was definite, while research funded by the pharmaceutical company behind these billion-dollar products, Bayer, suggested the opposite conclusion to be true: that there was no increased risk evident. A team of experts, some of which had financial ties to the company, voted against having the pills taken off the market when presented with the question of whether the risks of taking these pills outweighed the benefits.

Bayer is facing 11,300 lawsuits from women who have been seriously injured and family members of women who have died after taking one of the company’s bestselling hormonal contraceptives. They have settled the first 500 addressed with a total of $110 million in payouts. When discussing this process with a lawyer representing many of the women I was told that Bayer would do anything to avoid a trial wherein the full spectrum of their marketing strategies would be revealed.

The FDA came to the decision to add into the insert included with these drugs a statement of the discovery of “conflicting” research that suggested the pills had a higher risk of causing blood clots  (up to three times higher) – acknowledging the discrepancy of the research funded by Bayer and giving it equal standing as that performed by other bodies including the FDA itself.

Prior to this decision being announced a number of women’s health groups got together to write a letter to the FDA asking that they look again at the question put to the board of experts. They argued that the correct comparison for the board to consider would be between drospirenone-containing contraceptives and other oral contraceptives, and not between Bayer’s drugs and unwanted pregnancy. In the final sentence, they remarked that they believed that “lives will be saved” if the pills were no longer on the market. They met with the FDA and one representative asked that the FDA strongly reassess its acceptance of Bayer-funded research. Another asked that the drugs no longer be prescribed and that the FDA “get back to the arc of history and progress that protects women while supporting their contraceptive needs.”

The new labeling will state the “conflicting” findings and advise that women speak to their doctor if concerned. The official statement on this decision, relayed through the media coverage, reminded women that when compared to pregnancy the risk of development of a blood clot was insignificant. They also asked that women currently taking the drugs not stop doing so. Despite the FDA studies suggesting the blood clot risk is particularly high for women under 30, the statement compounded the understanding that the issue is only relevant to those over 35,  those overweight, those that smoke, and those with relevant medical history.

Is this additional text in an insert enough? Cynthia Pearson of the National Women’s Health Network has given an unqualified no as her response to the decision.  If no is the answer, then what needs to happen next? At this time I’ve seen no coverage outside of news reports that has shown the response of the wider feminist, or just female, community.

When I heard that the FDA was asking for a comparison between pregnancy risks and the risks of Yaz and Yasmin, and that the women’s health groups were calling for, in their letter to the FDA, a comparison between these oral contraceptives and other brands not containing drospirenone, I immediately wanted to know why the comparison was not between using these pills and not using them — as in using other forms of non-hormonal contraception with similar effectiveness. This would produce the biggest gap, and put the statistics in starker relief.

There is too much dependent on the FDA not acknowledging the efficacy of non-hormonal contraceptives or admitting that research funded by the pharmaceutical company producing the drug is not reliable. These were for some years the most popular oral contraceptives. It is important that it is believed that there truly is an “arc of history and progress that protects women.”

Even the women’s health group representatives appear to understand this as a blip in an other uninterrupted history of outstanding service. To my mind, such behavior by the FDA should raise some serious suspicions of their motivating force. They advise that women should discuss this with their doctors – doctors who probably know less than I do, due to time constraints, inclination, as well as doctors that could well be directly or indirectly benefitting from backing Bayer.

If it’s taken this long to get a tentative admission of the blood clot risk, what do we not know about the other side effects of these pills? What were the benefits, outside of preventing pregnancy, of Yaz and Yasmin that the FDA saw as so important to women?

The reaction of the women’s health groups suggests an attempt to work within the system, rather than against it.  Does the FDA see itself as protecting the freedom of the millions of women who decided to take Bayer’s oral contraceptives, the millions that made it a bestseller? When a corporation can and will do anything to sell its product in ways that even the most cynical consumer would find shocking can we uphold the notion of informed consent?

We live in a very different time to 1970 when the result of the Nelson Pill Hearings was the inclusion of an insert in birth control pill packets. Then, the other noise of advertising – both overt and hidden – was not loud enough to drown out the message. We are now far happier with corporations telling us what to do than we are with being dictated to by the government. Consumer-driven choice keeps women on the pill – with doctors swapping them between the many brands as side effects appear. Laura Wershler and I put together a guide to a birth control rebellion. We live with a culture that stresses there is no alternative – to the pill or the system that supports it.

To quote a recent New Yorker piece by Margaret Talbot, by the way of Karl Marx, perhaps we must admit that – “Women make their own circumstances but not under circumstances of their own making” – and work from there.

This guest post is was originally published in re: Cycling and is posted here with the author’s permission.

Last year, I read about a case of a nurse who alleged being sexually harassed by a doctor during her job interview, and a couple of months later I was struck by a report from the Netherlands about the high rate of sexual harassment experienced by female nursing and healthcare workers. Although cases like these make it seem like doctors and managers are the primary perpetrators of sexual harassment, reports show that it is patients who sexually harass nurses most often.

With a recent study suggesting that nurses simply distance themselves from patients who are sexually inappropriate, how do nurses maintain quality health care of these patients? A new book, Catheters, Slurs, and Pick-up Lines: Professional Intimacy in Hospital Nursing (Temple University Press) sheds light on female nurses’ experiences of being sexually harassed by patients.  For this month’s column, I had the chance to ask the author, sociologist Lisa Ruchti, Ph.D. of West Chester University, about nurses experiences of “intimate conflicts” with patients.

Adina Nack: Why did you decide to study the dynamics of patient-nurse interactions?

Lisa Ruchti: I initially thought that nurses’ experiences of sexual harassment by patients would be similar to waitresses’ experiences of sexual harassment by customers because they are each one type of women’s work. Instead, I found that nurses did not refer to their encounters as ‘sexual harassment’ because work culture affects definitions of sexual harassment (other sociologists have found this too; for example, Christine Williams and Kirstin Dellinger).  In nursing, it was the fact that nurses provided both professional and intimate care that contributed to differences in how and when nurses said they were sexually harassed. I became intrigued with the function of intimacy in professional care work and wanted to learn more.

AN: I’m intrigued by the concept of “professional intimacy” – how is this experienced by nurses?

LR: In my work, I found that nurses negotiated a cycle of what I call “professional intimacy” with patients. I also found that negotiating intimate conflict with patients is inextricably a part of how nurses gain their trust. Nurses start with gaining the intimate trust of their patients. This trust sometimes escalates to patients having feelings of familiarity for their nurses, which leads to conflict for the nurse. These conflicts include patients feeling entitled to service beyond the scope of care in nursing, angry verbal interactions, and/or sexualized entitlement. This conflict can also be unavoidable such as the ways that nurses negotiated the sexual encounters between patients and their visitors. Nurses negotiate care through this conflict to renew trust to ensure that quality health care is administered.

AN: How do nurses experience conflict when providing care to patients?

LR: The majority of the 45 nurses I interviewed avoided describing patient care as involving conflict. They used words like nurture, kindness, and compassion to make it seem like nurses “being caring” was a natural personality characteristic characterized by goodness. Feminist philosopher Eva Kittay discusses this in her work: patients are not usually described as anything other than “needy,” and we don’t tend to think of needy people as causing conflicts for those who provide their care. My focus on identifying conflict is as much about seeing patients clearly as it is about seeing the work of nurses clearly.

AN: You make a key point about not only a nurse’s sex but also her race/ethnicity shaping her experiences of patients’ harassment – can you give a couple of examples of how nurses described these interactions?

LR: It is one thing for nurses to manage sexually explicit language or touches; it is quite another when those are combined with racial slurs and epithets.  Imagine that a nurse not only walks in to check on a patient and sees himmasturbating, but she is also called a “dirty foreigner.” Or, a nurses isgiving a patient a bath, and the patient says you remind him of his mammy. It was incredibly important for me to look at the function of multiple identities since I was looking at intimate care as something that is constructed in interaction between patients and nurses and informed by social ideologies. Intersectionality is an incredibly useful tool when explaining complex social experiences.

AN: As a medical sociologist, I was instantly hooked by your book’s title, but I can also see why many of us — not just nurses — should read your book. 

LR: Thanks, I wrote it not just to give voice to nurses but also because almost all of us have all been patients or visited loved ones in hospitals. Many of us have or will have long medical journeys at some point in our lives, and this book can help us understand a vital part of that journey. If we can better understand the lives of those who are taking care of us, then we can help ensure that quality care occurs when we need it.  Other studies have documented how much nurses care about patients, and it’s time for us to listen to their stories – we need to understand their experiences of caring for us.

2011 brought us two top-selling autobiographical takes on female aging. Jane Fonda’s Prime Time asks readers to explore everything from friendship to fitness to sex, with a goal of having us accept that “people in their 70s can be sexually attractive and sexually active.”  Betty White’s If you Ask Me (And Of Course You Won’t) offers readers a candid and often humorous take on the last 15 years of her life. White warns of the pitfall of our youth-centric culture: “So many of us start dreading age when we’re in high school. And I think that’s really a waste of a lovely life.”  While these celebrity authors paint provocative personal portraits of aging, I’m drawn to the new book by Colgate sociologist Meika Loe, Ph.D.: Aging Our Way: Lessons for Living from 85 and Beyond (Oxford University Press) charts her three-year journey following the lives of 30 diverse “elders” (women and men ages 85 to 102 years old), most of whom were aging at home and making it work.

Aging Our Way: Lessons for Living from 85 and Beyond

Adina Nack: How did your last book on the Viagra phenomenon lead you to your new book on the ‘oldest old’?

Meika Loe: For The Rise of Viagra I interviewed elder men and elder women partners of Viagra users. It became clear that ageism impacted their lives and was a key ideology that propelled the Viagra phenomenon forward. Afterwards, I missed those interactions with elders and wanted to know more about their experiences aging at home. Aging Our Way ended up being a book that focuses more on elder women’s experiences, voices that had been marginalized, if not completely absent, from the media coverage of the Viagra phenomenon.  In the 85+ age group, women outnumber men by almost 3 to 1, and close to 80% of elders living at home alone are women. Too many people assume that research on elders is sad and depressing, in comparison to research on Viagra. To the contrary! I find elders’ stories inspirational. Aging Our Way features the lessons I learned from them – lessons for all ages.

AN: Aside from the Viagra interviews, what inspired you to focus on this group of people who are all more than twice your age?

ML: I was extremely close with my grandparents and great-grandparents growing up. More recently, I rent a room from a village elder in the small town where I work. Living with her, an invisible world opened up to me – a world of widows caring for one another and collectively attending to quality of life, mostly in the absence of biological kin.  Like, Carol, my seventy-something landlady, who gets a check-in call from octogenarian Joanne every morning at 8 a.m. Then Carol calls 98-year-old Ruth. All of these widows have lived alone in their homes within 10 square blocks of each other for decades, and now they constitute a social family. Once in a great while, when Carol cannot reach Ruth, she’ll grab the extra key and head to her home to make sure everything is okay. One time she found Ruth on the floor.

AN: That must have been scary – so, even with this type of ‘morning phone tree’, isn’t isolation a problem for these women and men aging alone?

ML: Yes, like most of us, elders attempt that delicate balancing act between dependence and independence every day. So, while many of these elders value independent-living, they’re also adept at building social networks. Ruth H. is committed to making a new friend every year of her life: she reaches out to my campus’s Adopt-a-Grandparent group and has five student walking partners this year, all new friends. That said, aging alone comes with its share of isolation and risk, and I’m reminded of Elizabeth, a Navy veteran and high school English teacher who insisted on living alone in her home, amidst her longtime friends and neighbors, despite her children’s pleas for her to move to Georgia. Elizabeth recently passed away during Hurricane Irene. She was inspecting her basement for flooding and must have fallen. This is such a sad story, but Elizabeth would not have wanted it any other way: she said she wanted to die with her boots on.

AN: Do women have an advantage over men when it comes to longevity and aging?

ML: Social epidemiologists Lorber and Moore have shown that women live longer but not necessarily healthier lives. Traditional gender roles take their toll: often, women prioritize caring for others for so long that their own health suffers.  Perhaps as a result, women have higher rates of chronic illness and depression. At the same time, many of the women I followed are enjoying a chapter in their lives where they can focus on themselves, their communities, their gardens, and their own health. Shana, 95, says things like “Now I am finally living for myself. Now I can focus on me.” Most women have lifelong gendered skill-sets for self-care: systems for food preparation, cleaning, bathing, budgeting, and reaching out to others. The men I followed are less adept at those skills: they had never been expected to cook and clean. So men, like Glenn, told me about having to learn these skills after the loss of their spouses.

AN: Does caretaking of others really end at age 85?

ML: Caretaking continues, often in new and familiar ways.  I think of Olga, age 97, caring for her grandson every weekend and putting aside a few dollars every day for her daughter who is battling cancer.  In her subsidized senior housing community, she delivers hot meals, hems pants, and runs errands. By caretaking, Olga feels a sense of community, a web of support. When she needs assistance, she has options and knows where to turn. So contrary to expecting nonagenarians to be sickly and dependent, many not only receive but also give care.

AN: Talk of cutting Social Security and Medicare has been in the news – how did you see these programs impacting elders’ lives?

ML: I have to admit – in my 30s, I see money going out of my paycheck—and I remind myself that that money is put aside for when I need it – I just hope it will be there! Through this research I saw how and why programs like Medicare and Social Security matter. For example, Juana worked in factories her whole adult life, and her small Social Security check keeps her hovering above the poverty line, able to afford rice and beans for the family and to pay for cable TV so she can watch her beloved Yankees.  Medicare covers annual doctor’s visits that likely keep her from spending time in the emergency room, a more expensive cost for society. Like most elders, she depends on Social Security for a significant portion of her income.

AN: Why should we all – not just the elders in the U.S. – read your book?

ML: Undergrads come to my Sociology of Aging course with all sorts of preconceived notions. They dread aging, seeing it as synonymous with depression, disease, and death. Our ageist society has taught them that aging equals loss, and they’re surprised to learn about elders who are aging on their own terms: coordinating self-care, combating isolation and loneliness, and exercising autonomy and control – sometimes in the face of disabilities and chronic illnesses. We all benefit from learning creativity, connectivity and resiliency from our elders. They teach us crucial lessons about all stages in life: living in moderation, designing comfortable spaces, constructing social families, appreciating humor and touch, and building social capital.  And, let’s face it, if we’re lucky, then we will all be elders soon enough.

I respect that some of you are anti-vaccines–or just anti-Gardasil—but I hope that some Girl with Pen readers will join me in cheering what I consider a better-late-than-never decision by the CDC’s Advisory Committee on Immunization Practices. It has officially recommended that boys and men ages 13-to-21 be vaccinated against the sexually transmitted disease HPV (human papillomavirus) to protect from anal and throat cancers.

There are many reasons this makes good sense. As I wrote in the Winter 2010 issue of Ms., there’s overwhelming evidence that HPV can lead to deadly oral, anal and penile cancers–all of which affect men and all of which are collectively responsible for twice as many deaths in the U.S. each year as cervical cancer. However, vaccines are a touchy topic, and I want to be clear that I’m not advocating in favor of or against anyone’s decision to get an HPV vaccination. I do strongly advocate for boys and girls, men and women, to have equal access to Gardasil and any other FDA-approved vaccine. Private insurers are required to cover HPV vaccines for girls and young women with no co-pay under the 2010 health reform legislation, and with this decision, that coverage requirement will extend to boys and young men, effective one year after the date of the recommendation. And, whether or not you or your loved ones get vaccinated against HPV, we will all benefit from more vaccinations, considering the extent of this sexually transmitted epidemic/pandemic, which affects as many as 75 percent of adult Americans and can be spread by skin-to-skin genital or oral contact (yes, that includes “French kissing”).

However, the media coverage of the recommendation includes a line of reasoning that I, as a sexual health educator and researcher, find offensive, ignorant, and inaccurate. The New York Times wrote: “Many of the cancers in men result from homosexual sex.” Really? What counts as “homosexual sex”? Most public health experts and HIV/AIDS researchers view “homosexuality” primarily as a sexual orientation, sometimes as a social or political identity, but not as a type of intercourse. Anyone who studies U.S. sexual norms knows that oral sex and anal sex–the behaviors cited as increasing risks of HPV-related oral and anal cancers–are not restricted to men who have sex with men. In fact, the NYT article itself asserts, “A growing body of evidence suggests that HPV also causes throat cancers in men and women as a result of oral sex” –so you don’t have to identify as a “homosexual” man to be at risk; you don’t even have to be a man.

Nevertheless, the New York Times goes on to muse that “vaccinating homosexual boys would be far more cost effective than vaccinating all boys, since the burden of disease is far higher in homosexuals.” Thankfully, the author also thought to check this idea with a member of the CDC committee, who seemed to grasp the ethical and practical challenges of making a recommendation based on a boy’s or man’s “homosexuality.” Kristen R. Ehresmann, Minnesota Department of Health and ACIP member, is quoted as cautioning, “But it’s not necessarily effective or perhaps even appropriate to be making those determinations at the 11- to 12-year-old age.”

Still stuck on the question of sexual orientation, that NYT author seeks to console potentially “uncomfortable” parents of boys by reassuring them that “vaccinating boys will also benefit female partners since cervical cancer in women results mostly from vaginal sex with infected males.” So, is the message, if you don’t want to imagine your son having oral or anal sex with a male partner, then you can focus on the public health service you are providing for girls and women who have male partners?

Instead of contributing to a homophobic panic, I thought it might be helpful to field a few frequently-asked-questions:

Q: Do you have to have a cervix to benefit from the “cervical cancer” vaccine? A: No. Despite its early branding, Gardasil has always been an HPV vaccine. Physiologically speaking, boys and men could have been benefiting from the vaccine since its initial FDA approval.

Q: Why are they recommending vaccinations for girls and boys as young as 11? A: Vaccines only work if given before contact with the virus. Reliable data on age of first “French” kiss is not available, but recent surveys show that about 25 percent of girls and boys in the U.S. have had penile-vaginal intercourse before their 15th birthdays.

Q: Are you too old to benefit? A: If you have not yet been exposed to all four of the HPV strains covered by Gardasil, then you can still gain protection. The more challenging question is: How would you know? The only ways to test for HPV (and then HPV type) is by tissue samples being sent to a lab. Most HPV infections are asymptomatic.

Q: What’s the risk of not getting vaccinated? A: We know that U.S. cervical cancer rates have dramatically decreased in recent decades due to improvements in screening, such as the Pap smear, and better treatment options. However, rates of HPV-related oral and anal cancers are reported to be increasing–and our screening options for these types of cancers are not as effective, affordable or accessible as those for cervical cancer.

Q: So, what can an unvaccinated person do to protect him/herself from a cancer-causing strain of HPV? A: Abstain from behaviors that can transmit the virus, such as deep/open-mouthed kissing, and use barrier methods when engaging in vaginal, anal or oral sex.

If this last answer strikes you as unreasonable, then mobilize your political energies to advocate for increased funding for HPV research. We need and deserve better ways to be tested and treated for the types of HPV that have been linked to serious and potentially fatal cancers. And, as my own research has shown, we have to get rid of the harmful stigma surrounding HPV and other sexually transmitted infections. We need to stop linking STDs to immorality. You can help by making sure your community supports medically accurate, age-appropriate sexuality education. And if you or a loved one wants more information about sexual health, then check out these free online resources.

(Originally posted on Ms. blog, cross-posted at