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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Live Monday morning, 2/2: The Importance of #ReproductiveHealth to Ending #HIV”

Monday morning: Watch it on You Tube. 

Local Speakers: 
Lynn Matthews, MGH / Seth Bloom, MGH / Rebecca Zash, BIDMC / Kunjal Patel, HSPH

aids slide
Mofenson slide

Invited Speakers:
Lynne Mofenson, Elizabeth Glaser Pediatrics AIDS Foundation

See “Risk of HIV Acquisition during Pregnancy and Postpartum: A Call for Action”

Pregnancy hormone-associated changes in the female genital tract, including changes in vaginal epithelial thickness, the vaginal and gut microbiome, and an increase in CCR5 co-receptor expression, may create a favorable milieu for HIV acquisition in the female genital tract during pregnancy


Craig Cohen, UCSF School of Medicine / Jeanne Marrazzo, UAB School of Medicine / Lena Serghides, University of Toronto / Jeffrey Stringer, UNC-CH School of Medicine

downloadLocation:
Joseph B. Martin Conference Center, Rotunda Room, HMS | 77 Avenue Louis Pasteur, Boston

Morning Session: 
HIV Prevention in Pregnancy and Periconception:  The Role Of the Microbiome

Afternoon Session: 
What Will It Take to Eliminate Mother to Child Transmission Of HIV?  Challenges to HIV Treatment in Pregnancy (followed by a poster session and reception)

Please click here to register or visit https://cfar.globalhealth.harvard.edu/ for more information.

Events this week: #Healthcare, #diversity and #selfdrivingcars

In Somerville tonight 

The Scientists of The Fenway Institute
On Diversity and Doctors: The Science of Inclusive Healthcare

Monday, January 29th, 6:30-8:00pm at The Burren (247 Elm St, Somerville MA 02144) (directions)

People are diverse; healthcare should reflect that diversity. Founded in 1971 on the belief that “healthcare is a right, not a privilege”, Fenway Health is a federally-qualified community health center that specializes in providing the best quality care for Lesbian, Gay, Bisexual, and Transgender (LGBT) individuals and people living with HIV/AIDS. The Fenway Institute (TFI) is the research, education, policy, and advocacy division of Fenway Health, and is a world leader in innovative HIV and LGBT population health research. Members of various TFI research teams will be presenting an overview of the active research being conducted at TFI, including HIV vaccine trials, HIV prevention studies focused on Pre-Exposure Prophylaxis (PrEP), and research with transgender and gender diverse populations.

Thursday: 6:30p.  “Does Mindfulness Alter the Brain? The Impact Meditation has on Our Brains.”  Sara Lazar.   Aeronaut, 14 Tyler St, Somerville.   Details.

More from SITN here.

Also Thursday:

Self-Driving Cars: Presented jointly with NBC News Digital

Thanks to Boston Science and Engineering Lectures website. 

 

#Feminist #health handbook — Our Bodies, OurSelves — struggles

This book was a revelation in the ’70s.  The Boston Women’s Health Book Collective has been a feminist health resource since then. Now, they are running out of cash. obos - Copy

More from The Globe

More from the OBO
S website:

Our landmark publication, “Our Bodies, Ourselves,” first published in 1971, has sold millions of copies and received numerous honors…. OBOS’s Global Initiative provides support for and works closely with women’s groups around the world that choose to adapt “Our Bodies, Ourselves” for their own countries and communities. These remarkable adaptions now exist in 30 languages — and counting. Working in collaboration with U.S. and global organizations, OBOS vigorously advocates for women’s health by challenging institutions and systems that devalue women and prevent them from having full control over their bodies and their health.

 It remains one of the few health groups that doesn’t accept funds from pharmaceutical companies. OBOS’s health information, both in book format and online, meets international standards for health research.

 

  

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.”

Where to put health stories in the paper and why it matters

The Boston Globe has taken to playing stories on medical research findings — like today’s digital mammography report —  on Page 2. For the writer, good play, but not great. To the reader, this suggest important, but not front page important.  This is commendable – often stories about complicated or incremental developments make  the front page,  giving readers the false impression that they need to stop eating eat this food or start taking that drug.

photo (3)A front page story on a research paper suggests a major development. (Good health writers try not to use the hyperbolic word “breakthrough.”)  So, the 1A Vertex story on a new CF drug rates as both a business and medical story. It could be life changing for people with cystic fibrosis and for the company’s bottom line, which is suffering from the arrival of new Hep C drugs. What we don’t like about the CF story – it could use a comment from someone not involved in the research. It’s a business story, so they seek out an analyst,  but he gushes. And his agenda is investing, not health.  It needs a CF scientist or clinician not involved in the study. Still, we get how hard it is to pull these stories together on deadline.

The Page 2 story on digital mammography offers such a comment. The JAMA article was accompanied by an editorial from Dr. Etta Pisano, a breast imaging radiologist at the Medical University of South Carolina who has done a lot of work in this area. Could have been a bit higher in the story but it works:

“There’s a debate about the harms of screening and overdiagnosis of breast cancers from mammograms and to me, this doesn’t resolve that,” she said.

Want to see how it shouldn’t be done? Check out the Health News Review. The list of stories that resorted to sensational language – breakthrough, game-changer, best way of detection, any woman should have this, lifesaver – was long.”

What’s the Boston play online? By late morning, neither story was high on the home page. At least you can click on the Business section from the home page. Health? Still no home on the home page. Click on “News” to find the link.