Farewell to #OurBodiesOurselves, the feminist health handbook. Won’t be publishing books, but will be a volunteer-run on-line site

Not sure I like the MTM metaphor, but this from the Globe. OBOS was created by a group called The Boston Women’s Health Book Collective.

“Our Bodies, Ourselves,” the 1970s-era bible of women’s health that has been updated over five decades to introduce generations of girls to their own anatomy, is going the way of “The Mary Tyler Moore Show” — still available online, but frozen in time.

 

The most recent print edition of the book will be its last, halting advancement in women’s health, contraception, and sexual awareness in 2011, as its authors shift to a Web-only presence and an all-volunteer model of advocacy.

This week’s announcement, prompted by financial pressures, triggered a wave of nostalgia among women of a certain age and hand-wringing about what the future holds at a time when the Trump administration has embraced religious-based research and eliminated some online information about women’s health.

For more on the group’s history, see a collection of their works at the Schlesinger Library at Radcliffe.

 

 

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DCIS, female “viagra” and other disturbing women’s health news

Big news in women’s health this week. Good news? Depends on how you see it.

The NYTimes reports that surgery for early stage not-quite breast cancer is pretty much useless. Not shocking since NCI decided that DCIS shouldn’t even be called “cancer.

They say, for instance, that some premalignant conditions, like one that affects the breast called ductal carcinoma in situ, which many doctors agree is not cancer, should be renamed to exclude the word carcinoma so that patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.

Here’s what the editorial on the JAMA study says:

The original goal of mammographic screening was to identify invasive cancers at the earliest stage, because of the superior prognosis of stage I cancers. Prior to the advent of screening, ductal carcinoma in situ (DCIS) made up approximately 3% of breast cancers detected. As we pushed to find smaller and smaller cancers, and targeted calcifications instead of just masses, we began to identify DCIS more frequently. Now DCIS accounts for approximately 20% to 25% of screen-detected breast cancers. The cells that make up DCIS look like invasive cancer both pathologically and molecularly, and therefore the presumption was made that these lesions were the precursors of cancer and that early removal and treatment would reduce cancer incidence and mortality. However, long-term epidemiology studies have demonstrated that the removal of 50 000 to 60 000 DCIS lesions annually has not been accompanied by a reduction in the incidence of invasive breast cancers.1 This is in contrast to the experience with removal of colonic polyps and intraepithelial neoplasia lesions of the cervix, in which the removal of precursor lesions has led to a decrease in the incidence of colon and cervical cancer, respectively.2 We now know that breast cancer encompasses a range of behaviors, from aggressive to indolent; the latter are more likely to surface with screening.3 The analysis of Narod et al4 fuels a growing concern that we should rethink our strategy for the detection and treatment of DCIS.

In this video from Dana Farber, Dr. Eric Winer says doctors need to be clear with patients about the reality of DCIS. “What this is all about is conversations between doctors and patients.” Still, he describes surgery as the standard of care.  Will that change? Despite evidence the lumpectomy is as effective as mastectomy, many women still choose the latter.

Also, the FDA approved so called “female viagra” Here’s the benefit: women taking flibanserin reported between 0.5 and one more sexually satisfying event per month, compared with women taking a placebo.

Here’s what Boston-based  OBOS had to via a guest post on an FDA hearing.earlier this summer.index 

Liz Canner, a filmmaker who produced the documentary, “Orgasm, Inc.,” which examines the search for a female sexual enhancement drug, said the company had “deceived women into taking a drug that doesn’t work better than drinking a glass of wine or two, and could end up killing us.”

“To approve this drug would set the worst kind of precedent: that companies that spend enough money can force the FDA to approve useless and dangerous drugs,” said Dr. Adriane Fugh-Berman of Georgetown University.

More than 30 of those who testified — including health-care providers and a number of women who had participated in the trials — urged the panel to support the drug. One provider stood at the microphone in awkward silence to illustrate how little she has to offer her patients with low sexual desire.

“I want to want my husband, it is that simple,” Amanda Parrish, a mother of four from Nashville, told the panel. “For us, flibanserin is a relationship-saving and life-changing drug.”

Here’s another POV from North Shore psychology blogger Dr. Daniel Carlat;

Flibanserin (brand name Addyi) has just received a controversial and complicated FDA approval for the treatment of low sex drive in women. There’s a lot of outrage in the blogosphere, much of it centered on the lobbying of the FDA by disease advocacy groups.  I agree that this politicization of what should be a scientific process is embarrassing to both Sprout and its supporters. Nonetheless, I’m not nearly as hard on flibanserin as some of my colleagues.

However, the does agree with this statement:

Adriane Fugh Berman said it best as quoted by the New York Times: Flibanserin is a “mediocre aphrodisiac with scary side effects.”
 

Is female Viagra a scam? Boston women’s health group questions drug, supporters

indexThe non-profits pressuring the FDA to approve a drug billed as female Viagra do not quite make up a top ten list or women’s health advocacy organizations. This health writer has never heard of most of the groups cited in Sunday’s New York Times story.

But familiar women’s health groups, like Boston’s Our Bodies, Ourselves, are siding with the FDA on this one. From their response to an earlier review of the drug.

imagesWomen taking the drug had less than one additional “sexually satisfying event” (orgasm not required) than women taking a placebo. And in the meantime, the drug caused dizziness, nausea and fatigue, particularly with long-term daily use, in some women — hardly the recipe for sexual excitement.

The FDA also considered whether the drug had increased women’s desire — a crucial element of the HSDD diagnosis, which involves low or no sexual interest to the point of distress in people who are physically healthy and not depressed — and found that the drug failed in this area.

The FDA takes another look — and offers  a live webcast of the deliberations —  on Thursday.

In it’s report on the 2010 FDA rejection of the drug, the OBOS  website notes another Bay State-based critic of the drug:

According to Julia Johnson, the panel’s chairwoman and head of the department of obstetrics and gynecology at the University of Massachusetts Medical School, the impact of the drug flibanserin … was “not robust enough to justify the risks.”

More here from another independent, feminist women’s health group, The National Women’s Health Network:

Members of the campaign called “Even the Score” are challenging the FDA on what they claim is a perpetuation of a gender bias by virtue of the claim that the FDA is holding drugs that treat women’s sexual problem to a higher standard than those for erectile dysfunction.  Even the Score has engaged prominent women’s rights organizations, health care providers, the media and members of Congress in a public relations misinformation campaign to criticize the FDA.  There are Female Sexual Dysfunction drugs currently under FDA review, and Even the Score is attempting to move the discussion away from the safety and effectiveness of these drugs and towards controversy about gender bias. 

The reality is that no amount of public relations or slick marketing can get around the fact that the drugs currently being proposed for Female Sexual Dysfunction simply don’t work and may be quite dangerous. Poor efficacy, a strong placebo effect, and valid safety concerns have plagued all of the drugs that have been tested so far. There are many reasons why the proposed drugs may not have been effective in increasing women’s sexual enjoyment; chief among them is the heterogeneity of female sexuality and, of course, research demonstrating that sexual problems are mostly shaped by interpersonal, psychological, and social factors. Nevertheless, pharmaceutical executives will continue to drum up hype over the possibility of a “pink Viagra” because the profit market for this type of drug is estimated to be over $2 billion a year.

Note that neither of these groups accept funding from the pharmaceutical industry. Even the score supporter include Sprout, the company seeking approval for the drug and Trimel Pharmaceuticals, a company testing a nasal testosterone gel for “female orgasmic disorder.”

Did news reports miss the message on IOM breast cancer/environment study?

Earlier this week, we cast this IOM study as offering little new news.  But, as Julia Brody of  The Silent Spring Institute points out, that’s not quite true.  From the environmental Health News website:

…(M)ost of the news media missed the significance of the assessment on environmental chemicals. The real news is that the report is an authoritative statement that a cascade of scientific evidence plausibly links consumer product chemicals and pollutants with biological activity suggesting breast cancer risk.

Instead of saying what is in the report, glass-empty stories said that the IOM “failed” to “definitely” link any chemicals to breast cancer or find “clear” environmental links. Some incorrectly said the report tells women to stop worrying about consumer product risks. These stories ignore the report’s important explanation that definitive evidence is not attainable and lack of human evidence of harm doesn’t mean something is safe.

From original NYTimes story on the report:

The report, 364 pages long and two years in the making, was issued on Wednesday by the Institute of Medicine, an independent group that is part of the National Academy of Sciences and advises the government and public. The work was done by a committee of 15 outside experts, mostly from universities, and nine institute staff members. The sole sponsor was a breast cancer advocacy group, Susan G. Komen for the Cure, which requested the report and spent $1 million on it.

For women who were hoping for definitive safety information about the huge number of chemicals to which people are exposed — from air pollution and cosmetics to cleaning products, food and drinking water — the report may come as a disappointment. It is based largely on a review of existing research, and its limited advice reflects the lack of solid scientific information in many areas of concern to the public.

Women should take note on Cape Cod, where the breast cancer rate is higher than average.  The Silent Spring Institute, one of the few groups doing research on environmental links to breast cancer, recently reporting finding 27 chemicals in well water on the Cape.

The 27 contaminants detected included 12 pharmaceuticals (the most common being one antibiotic and one epilepsy drug); five perfluorinated chemicals (found in non-stick and stain-resistant household products); four flame retardants; two hormones; one skin care product; one artificial sweetener; one insect repellent; and one plastics additive. Health-based guideline values were available for only four detected chemicals (PFOS, PFBS, DEET, carbamazepine), and no samples approached or exceeded these values. The most frequently detected chemical was acesulfame, an artificial sweetener, which was found in 85 percent of wells, and perfluorinated chemicals were detected in 70 percent of wells.

“While the levels of pharmaceuticals, flame retardants, and other emerging contaminants in drinking water are not currently regulated, we still think that it is prudent to find ways to prevent discharges from septic systems and wastewater treatment plants from impacting drinking water supplies, as we don’t fully understand the potential health impacts,” lead investigator Laurel Schaider said.

For more on health and the Massachusetts environment see  SSI or the Massachusetts Environmental Public Health Tracking (MA EPHT) Program Website

This website is designed to provide you with access to current and accurate health and environmental information available for Massachusetts. You can use Massachusetts Environmental Public Health Tracking (MA EPHT) information to learn about the health of your community and access information about your environment.

 

 

 

 

NOW Boston meeting focuses on health

The National Organization for Women brings its annual meeting to town tomorrow with a focus on health.

Unlike many conferences, this– 3 days at the Park Plaza in Park Square and Arlington St. — one has a daily rate: $65

Boston will play host to this year’s 2010 National Organization for Women Conference taking place July 2-4 at the historic Boston Park Plaza Hotel. NOW’s theme this year, “Loving Our Bodies, Changing the World,” is well-poised to address popular concerns with health and body image from a feminist, woman-empowering point of view. Widespread focus on health intensified after the passage of the health care reform overhaul in March, followed by First Lady Michelle Obama’s “Let’s Move” campaign aimed at prevention and wellness. NOW is a pioneer in the field of women’s health and body image, and the NOW Foundation introduced its signature Love Your Body Day campaign more than a decade ago.

Speakers include:Amy Goodman, of Democracy Now!; Feminist author Susan Douglas; Dr. Paula A. Johnson, executive director of the Connors Center for Women’s Health and Gender Biology at Brigham and Women’s Hospital; and state Sen. Sonia Chang-Díaz. The organization will also give an award to the founders of the Boston Women’s Health Book Collective, now known as Our Bodies Ourselves.

Goodman on mammography: Policyspeak v. pink ribbons

Globe-based national columnist Ellen Goodman writes today about how badly the USPSTF delivered the message on the limits of mammography in women under 50. She agrees with their recommendations. She just thinks the panel was blindsided by extremely angry women who are not willing to reconsider the notion that early detection is key to cancer survival.  Then there was the anti-health reform “guidelines = rationing/death panel”  crowd.

This was never going to be an easy message. The breast cancer research is more complex and controversial than the cervical cancer research that was released just days later with recommendations to delay and reduce pap smears. But nevertheless, this perfect storm created a perfect case on how not to deliver a public health message.

It’s important because – and I say this as someone whose mother, aunt, and sister have all had breast cancer – the task force had a strong story to tell. The benefits of mammography for younger women have been oversold. As Laura Nikolaides of the National Breast Cancer Coalition and a cancer survivor says, “People have been doing mammography as a security blanket: If you have a mammogram, you won’t die of breast cancer. We wish that were true.’’ The biology of the tumor – how aggressively it grows – is now judged more important than the size at which it was discovered. And the terrible reality is that we haven’t done much to change the survival rate of younger women who get this disease.

Norsigian of Our Bodies, Ourselves on single payer

First — lots going on in DC this week, including the Obama speech to the AMA, here via MSNBC. Click here for BHN’s favorite links.  Also note today’s WSJ interview with HIT man David Blumenthal.

So, Judy Norsigian of OB/OS and Jennifer Potter of BIDMC and Fenway Health opine in the Globe on why they think single payer approach to health reform will benefit women.  

A single-payer healthcare system would more effectively control costs than any other plan that Congress is considering as it moves toward a reform bill. And by controlling costs, existing resources could be allocated more equitably, especially for the benefit of women.

Update 6/17:  OB/OS  releases an official policy position on single payer 
 
BHN talked to Norsigian about health reform earlier this month. (Here’s a
link to a discussion of the Gawande story she refers to.)