Interested in learning more about Our Bodies Ourselves and the beginning of a worldwide movement for women’s health? Judy Norsigian, OBOS co-founder and executive director, is going to be on WBAI radio (99.5 FM in New York) this Thursday (Nov. 5) from 10 to 11a.m. EST. You can stream the interview at www.wbai.org.

Norsigian’s appearance is part of a special two-hour edition of the Joy of Resistance, WBAI’s multicultural feminist radio show. Expect her to weigh in on health care reform, the state of maternity care and many other urgent issues.

Joy of Resistance will offer copies of “Our Bodies, Ourselves” signed by Norsigian as a fundraiser premium, along with two award-winning documentary DVD’s: “Absolutely Safe” by Carol Leyva, which examines the safety of breast implants, and “Killing Us Softly: Advertising’s Image of Women-3” by Jean Kilbourne, a look at the pressures on today’s women to conform to commercial standards of beauty.

WBAI is part of the Pacifica Radio Network, which includes five radio stations (the other four are in Berkeley, Los Angeles, Houston, and Washington, D.C.) and more than 50 affiliate stations.

A new, freely available, open-access journal that launched this month reflects a position Our Bodies Ourselves has long held: Healthcare is better, and people are healthier and more empowered, when individuals are informed and can actively participate in their own care.

The Journal of Participatory Medicine, launched at last week’s Connected Health Symposium in Boston, will publish online peer-reviewed articles that “explore the extent to which shared decision-making in health care, and deep patient engagement, affect outcomes.” The inaugural issue includes articles from all stakeholders, including patients, healthcare providers, payers, and others.

The journal’s significance is underscored by the fact that current or former editors of three of the most prominent medical journals – JAMA, BMJ, and the Annals of Family Medicine – also contributed to the first issue. As Amy Romano at Science & Sensibility points out, even the journal’s peer review process is participatory and values the input of all stakeholders, especially patients themselves.

The journal is being published by the relatively new Society for Participatory Medicine. The organization also has a blog, e-patients.net, which focuses on and includes stories from patients becoming informed, connecting with other patients, finding support, and exploring potential treatments for their healthcare concerns.

The existence of this organization and its publications reflect a growing trend toward patient involvement in health care that has been inspired and enabled by the internet. The Pew Internet and American Life Project released a report earlier this year indicating that 61 percent of American adults look online for health information, and that “six in ten e-patients … say their most recent search had an impact, mostly minor, on their own health or the way they care for someone else.”

More than half said information they found online lead them to ask their physician new questions or to get a second opinion on their care.

The internet is also enabling access to personal health records and new ways of collecting and sharing health data. The Society and the Journal will promote efforts to encourage these developments while protecting patient confidentiality.

As one physician wrote of the e-patient phenomenon in 2008:

Patients want information, ideally tailored to their needs. They want to discuss this with their physicians without being shooed away, and would appreciate getting pointers. They even want access to their test results and medical records. Although many physicians feel threatened by all this, engaging the patient as a partner in her own care can be quite gratifying, improves patient satisfaction, and may even lead to better outcomes.

As an organization that has long held that women can become their own health experts and that women, as informed health consumers, are catalysts for social change, we agree.

The matter of how much personal information to share with patients comes up frequently for practitioners, and there are times when it can be most helpful. But it is a difficult decision.

In an essay online at WBUR public radio, Our Bodies Ourselves board member Anne Brewster, an internist who works at Massachusetts General Hospital, discusses her decision to disclose something about herself to a 30-year-old patient diagnosed with multiple sclerosis, an autoimmune disease of the central nervous system. When Brewster calls to give her the news, she shares that she has the same disease:

In revealing personal information, physician to patient, I had crossed a line. I did so intentionally, in an effort to bring compassion to our exchange, but still today, I cannot shake the slightly uneasy feeling that I have somehow breached medical etiquette.

When we enter medical school and don our white coats for the first time, the division between doctor and patient begins – “us” and “them.” We start our education by dissecting a human corpse, and in so doing, learn early on to separate the body from the person. We master the parts — the Ischial Tuberosity, the Latissimus Dorsi, the Sternocleidomastoid, the Flexor Digitorum Longus. We think about lymphatic drainage, muscle insertions, arterial supply, and nerve innervation. We divide the body into sections: distal and proximal, dorsal and ventral, lateral and medial.

We go on to study disease processes — so many that our heads spin. Eventually, we begin to take care of patients and are encouraged to remember the person behind the disease. We are instructed to make eye contact, to sit on the edge of the bed when we speak to a hospitalized patient, and to use touch when appropriate, by holding a hand or squeezing a shoulder. Empathy is cultivated, but at the same time, explicitly and implicitly, we are taught to keep an emotional distance. Sharing personal information is taboo.

Part of this is for survival. None of us could bear to feel all of the pain, the fear, the loss that we encounter daily in medical practice. If we allowed ourselves to realize that we are vulnerable to all of the diseases we treat, all the time, we could not function. And part of this is about being a good doctor. Emotions can cloud judgment, and the preservation of professional boundaries is essential to quality care.

But true objectivity is a myth.

Continue reading this excellent essay.

The latest newsletter from Women and Their Bodies (WTB), an Israeli-Palestinian initiative that is adapting “Our Bodies, Ourselves” into Hebrew and Arabic (see our previous post), includes this update:

We continue to undergo the massive and vital task of creating local and culturally adapted Hebrew and Arabic editions of ‘Our Bodies, Ourselves’ (OBOS). Women and Their Bodies is fortunate to have generous an unbelievable network of over 300 devoted women volunteers giving of their time and their skills towards the writing, editing, research, etc. of the book.

We are women from a wide spectrum of Israeli society, including religious, progressive and secular women of the Muslim, Christian and Jewish communities around the country. We come from a wide range of backgrounds and specializations: psychologists, facilitators of women’s groups, gynecologists, midwives, sexologists, gender and social studies researchers and more. We are all activists, each in our own way, promoting women’s equality, justice and human rights.

After 4 years of hard work, out of the 32, 20 Hebrew chapters are complete and 12 in various stages of preparation. 10 Arabic chapters are complete and 22 in various stages of preparation. The book in Hebrew shall be published in June 2010. Initially we intended to publish the Arabic edition a year after that. Instead, we have decided to publish the Arabic in three parts. The first part, including 10 chapters shall also be published in June 2010. We feel that it is essential to get this information out in the first part due to the general lack of accessibility to information of this kind within the Palestinian community.

WTB’s online information and action center, http://wtb.org.il/, is scheduled to go live this month. It too, will feature information in both Hebrew and Arabic.

Want to help support this project? WTB is raising support for the book by offering “social stock” in their organization. Your investment of $150 includes a copy of the Hebrew edition of “Our Bodies Ourselves” and printed acknowledgement of your investment in the the book. Secure online donations can be made here. Tax deductible donations can be made by check, payable to: The New Israel Fund. On the memo line, please write “for Women and Their Bodies” and the NIF identification number, 5459. Mail checks to NIF / P.O.Box 91588 / Washington, D.C. 20090-1588

Plus: Check out other OBOS projects underway in China, India and Nigeria, among other places.

As an Our Bodies, Our Blog reader, you know that the specific interests of women and health are intricately connected to broader issues of social change. For just this reason, OBOS has been a proud, longtime member of Community Works, a cooperative fundraising effort involving more than 30 Massachussetts social justice organizations.

Community Works is currently offering a special incentive that I wanted to share with our Massachusetts friends. You might be able to directly support OBOS’s work without even making a donation yourself.

Community Works receives donations largely through the convenience of payroll deductions at 52 private, public and nonprofit employers in the greater Boston area, representing more than120,000 employees. Such payroll deduction contributions to Community Works help to support the work of member organizations such as OBOS.

Any member group that enlists a new workplace that will offer Community Works as one of its employee charitable giving options will receive half of the proceeds of the first year’s campaign. So if you help OBOS enlist a new employer, you will help raise valuable funds for OBOS in the coming year.

The set-up is simple: Visit the Community Works website to see where campaigns are already underway. Then contact your friends in workplaces that don’t already offer Community Works as a charitable option. If you know anyone who can help bring Community Works to their workplace, please email me: judy (at) bwhbc (dot) org

If we are successful in securing the workplace you suggest, OBOS co-founders (myself included) will send inscribed copies of any of OBOS’s books to the person or institution of your choice.

This is a wonderful opportunity for those of you who value what OBOS does to provide concrete support to both our organization and the other social change groups that are part of Community Works. Whether working to address environmental justice, sexual assault, youth and community violence or health care access, each Community Works member operates within a framework of equality, justice and peace.

Remember, it takes a village and more to sustain the work of public interest organizations like ours. Take a look at the current employer partner list and let us know who’s missing. Your help with this effort is much appreciated!

Judy Norsigian is executive director of Our Bodies Ourselves.

Last year, in an article published at Our Bodies Ourselves, freelance writer and registered nurse Jen Dozer wrote about the emotional effects of pregnancy after infertility or loss. She later spoke with Our Bodies Our Blog about her own experience with infertility and the anxiety and distrust she felt toward her own body when she did become pregnant.

After Dozer’s article was published, she asked readers of her blog, Mrs. Spock, to share their own stories about infertility and pregnancy loss. Nine of those stories are now published at Our Bodies Ourselves.

With unflinching honesty, the writers describe what it’s like to undergo test after test; to commit to infertilty drugs only to see hopes rise and fall with each cycle; or to conceive after infertility, with no clear understanding of why the pregnancy suddenly happened — and whether it will last.

Kathleen O’Grady sums up the anguish that comes with realizing a pregnancy cannot be willed by love and desire alone: ”Pregnancy was not supposed to happen like this — with the cold medical hands of specialists leading me through an intricate web of possible bodily malfunctions.  But through a spontaneous moment of grace, a sacred orgasmic moment when one plus one makes three.”

In another story, the writer walks readers through her discovery, at her 20-week scan, that her son no longer has a heartbeat; his sister still does.  ”I began to think about the flu I had come down with last week and the antibiotics I had taken for the resulting sinus and ear infection, the accidental diet Sprite I had, the Tylenol I had taken to help with the misery of the flu symptoms. I thought of all the things that I thought I had done wrong and asked Ajay, “Did I do this? Is this my fault? [...] How is this happening?”

Read their stories here. Personal experiences of loss and doubt are rarely included in books about pregnancy. But they are essential. As Dozer writes at her own site:

I’ve often thought that birth, to us in the infertility trenches, is more denouement than climax, because we do all our laboring on the front end. All of our blood, sweat, and tears, all of our anticipation, all of our hard work, is spent on conceiving our children, or navigating the adoption process. And just like a labor, no two experiences are alike. I liked the idea of sharing our stories of infertility and loss, and pulling back the veil on the many paths to parenthood- or to childfree living as the case may be. [...]

It is only by sharing our stories that the ten percent of us that have “tubeless” or “unicornate” or “incompetent cervix” or “anovulatory” stamped on our foreheads look more like the daughters, sisters, friends, and neighbors we are, than the kooky Octomom looking for a reality show deal the fertile world thinks we are.

It is with heavy heart that so many of us receive the news of Sen. Ted Kennedy’s death. Although I have been anticipating this moment for weeks now, the reality is still such a shock.

I know that for so many women’s health activists, Kennedy’s passing will only strengthen our resolve to continue his valiant fight for meaningful health care reform. I have started writing letters to several more liberal Republicans, beseeching them to honor his memory by breaking ranks with the Republican Party and its current efforts to eliminate the public health insurance option from any bill coming out of Congress.

As a tribute to this tireless advocate for the millions who had no political power, each of us can think of one gesture we can carry out in the coming weeks.

In 2002, I testified before the Senate HELP Committee on the topic of somatic cell nuclear transfer (which involves creating cloned human embryos to serve as a source of embryonic stem cells for scientific research; it poses health risks for women who provide eggs for such research). Kennedy, who was co-chairing that particular HELP Committee hearing, was ever so gracious, even though I knew he did not agree with the position of Our Bodies Ourselves at that time.

And when my late husband, Irving Kenneth Zola, died in 1994, shortly after he was appointed to the National Council on Disability, Kennedy’s remarks at a special memorial service for Irv in Washington, D.C., brought tears to everyone’s eyes. His compassion, tenacity and commitment to the needs of all remain an inspiration to me both personally and professionally.

We will miss you terribly, Ted, and we will all fight even harder for the causes you championed for more decades than some of us have even been alive.

Judy Norsigian is executive director of Our Bodies Ourselves.

More swooning over Stephen Colbert ensued last night when “Our Bodies Ourselves” popped up on the screen during a feature on women’s health.

The topic? How Wyeth pharmaceutical company hired ghostwriters to write scientific papers that emphasized the benefits of taking hormone replacement therapy and de-emphasized the risks. More than 8,000 lawsuits have been filed against Wyeth by women who claim that the company’s hormone drugs caused them to develop illnesses.

The New York Times broke the news earlier this month. Natasha Singer writes:

That supposed medical consensus benefited Wyeth, the pharmaceutical company that paid a medical communications firm to draft the papers, as sales of its hormone drugs, called Premarin and Prempro, soared to nearly $2 billion in 2001.

But the seeming consensus fell apart in 2002 when a huge federal study on hormone therapy was stopped after researchers found that menopausal women who took certain hormones had an increased risk of invasive breast cancer, heart disease and stroke. A later study found that hormones increased the risk of dementia in older patients.

The ghostwritten papers were typically review articles, in which an author weighs a large body of medical research and offers a bottom-line judgment about how to treat a particular ailment. The articles appeared in 18 medical journals, including The American Journal of Obstetrics and Gynecology and The International Journal of Cardiology.

The articles did not disclose Wyeth’s role in initiating and paying for the work. Elsevier, the publisher of some of the journals, said it was disturbed by the allegations of ghostwriting and would investigate.

Here’s the video of last night’s “The Colbert Report” segment “Cheating Death With Dr. Stephen T. Colbert, DFA.” The women’s health feature starts around 4:50.

Colbert offers this hilarious disclaimer about his credentials: He’s a doctor of fine arts, not a MD — “When I deliver a baby, it comes out through a Georgia O’Keefe painting” (must see). Then he launches into the Wyeth story:

Recently the scientific community was shocked to learn that Wyeth Pharmaceuticals hired ghostwriters to author 26 papers downplaying the risks of taking hormones for menopausal women.

This is shameful. Menopausal women?

What about pre and post menopausal women? We need to fabricate studies to make them take hormones, too, so every woman can enjoy the increased risks of heart disease, stroke and dementia. It’s what connects them as sisters. They can call it “The Sisterhood of the Traveling Hospital Gown.”

The story of these ghostwriters alerted ["Cheating Death" sponsor Prescott Pharmaceuticals] to one group of women that hasn’t yet been offered the benefits of hormone therapy: dead women.

Which is why Prescott pharmaceuticals is proud to present Vaxa-Geist — the first hormone replacement therapy for lady ghosts.

Why do you think they’re haunting us? They’re moody.

This hormone works great for ghosts of all ages, from little girl ghosts to old librarian ghosts to 3,000-year-old biblical ghosts. Talk about a hot flash.

Side effects of Vaxa-Geist may include hair blood, internal coolating and barry manilobes.

That’s it for cheating death …

OK, so maybe a little forced for Colbert. But still. It’s very cool to see the preeminent political satirist take on the exploitative manipulation of women’s health — and the fact he shows “Our Bodies Ourselves” while doing it makes me giddy.

So chime in now, OK? : ) I also added words related to women’s health and politics to the captcha field commenters use to prove they’re real people. Way more fun than built-in terms like “broad” or “ikea.”

We’re experiencing some backend technical difficulties. Apologies to everyone who has tried and failed to post a comment. We’re working on a fix. Thanks!

I could have announced that we’re taking off the rest of the week at the start of the last post, but then I wouldn’t have had reason to feature this album cover, one of my favorites.

So, yes, OBOB is taking a summer break. We will resume posting Monday, Aug. 10.

The video unfortunately can’t be embedded, but if you’re feeling the need to escape, go here to watch the Go Go’s perform “Vaction” in concert or view the classic water skiing video. (Warning: may cause uncontrolled singing or humming; side effects usually are mild and may subside within 24 hours, unless you own a  drum set or tiara).

Dana Goldstein of The American Prospect interviewed Our Bodies Ourselves Executive Director Judy Norsigian about OBOS’s support of a single-payer health plan.

Though there’s little momentum in Congress around a single-payer plan, Norsigian argues that health reform won’t be sustainable unless costs are controlled, and single payer does more than any other proposal in reigning in administration costs.

Our Bodies Ourselves published a position paper last month outlining the numerous ways a single-payer proposal would benefit women. Some key points:

* The only national plan for health care reform that explicitly includes women’s reproductive health services, including abortion, is HR-3000, which was recently reintroduced by Rep. Barbara Lee (D-CA).

* Single-payer system would eliminate the need for Medicaid.

* Coverage is independent from employment and independent from marriage.

* Single-payer system would address the cost issues that send women into debt and bankruptcy.

For all that’s being written about single-payer these days, there’s still some confusion about how it would be run. As Physicians for  National Health Program explains it:

Single-payer is a term used to describe a type of financing system. It refers to one entity acting as administrator, or “payer.” In the case of health care, a single-payer system would be setup such that one entity — a government run organization — would collect all health care fees, and pay out all health care costs. In the current US system, there are literally tens of thousands of different health care organizations — HMOs, billing agencies, etc.

By having so many different payers of health care fees, there is an enormous amount of administrative waste generated in the system. (Just imagine how complex billing must be in a doctor’s office, when each insurance company requires a different form to be completed, has a different billing system, different billing contacts and phone numbers—it’s very confusing.) In a single-payer system, all hospitals, doctors, and other health care providers would bill one entity for their services. This alone reduces administrative waste greatly, and saves money, which can be used to provide care and insurance to those who currently don’t have it.

President Obama spoke to delegates at the American Medical Association meeting in Chicago today (transcript), reassuring them the country is not moving toward a single-payer healthcare plan.

It’s too bad, because Our Bodies Ourselves today published a detailed position paper explaining why the single-payer model is the most cost-effective and smartest approach to solving the United States’ health and medical care crisis — and why it’s the best plan for women.

Grab this press release, designed to be tweeted and shared with your networks, and help spread the word.

Judy Norsigian, OBOS executive director, and Jennifer Potter, MD, director of the Women’s Health Center at Beth Israel Deaconess Medical Center and director of women’s health at Fenway Health, co-authored an op-ed in today’s Boston Globe that summarizes some of the key arguments and outlines what women stand to gain.

“The only national plan for healthcare reform that explicitly includes women’s reproductive health services, including abortion, is one sponsored by Rep. Barbara Lee, a California Democrat,” they wrote. “Other sponsors of single-payer plans are also amenable to including women’s reproductive health services.”

Lee is expected to re-introduce H.R. 3000, the United States Universal Health Service Act, this legislative session.

More than 10 benefits for women are discussed in detail in the position paper. Among them:

* Coverage is independent from employment.

* Coverage is independent from marriage.

* Single-payer system would encourage better care for chronic illnesses.

* Single-payer system would eliminate the need for Medicaid.

* Single-payer system would address the cost issues that send women into debt and bankruptcy.

The position paper also covers why the so-called public option — a government-sponsored insurance plan that would compete with private insurance coverage — is not enough to drastically improve coverage and access. And it provides additional articles and resources to support its arguments.

Check it out and let us know what you think.

Far be it from us to add to unfriendly female fodder, but does it really make sense to call out “Our Bodies, Ourselves” for not focusing more on female consciousness raising parties — or for the book cover being pink?

Granted, most modern activism doesn’t involve mirrors, but has the author read feminist blogs or seen Twitter and Facebook? There’s plenty consciousness-raising happening, and plenty of feminist media critiquing our all-too critical culture.

Plus: Speaking of a consciousness raising party, if you’re lucky enough to be in New York on June 12, go celebrate Feministing’s 5th Anniversary. Happy early birthday, ladies!

Last month, a marathon in Tel Aviv drew runners raising money for a number of different causes — including an adaptation of “Our Bodies, Ourselves.”

Sophie Walsh, a clinical psychologist who moved from London to Tel Aviv in 1994, ran in support of Women and Their Bodies: The Women’s Association for Health Action and Responsibility. Founded in Israel in 2005, Women and Their Bodies (WTB) is an Israeli-Palestinian initiative that is adapting “Our Bodies, Ourselves” into Hebrew and Arabic.

“This version will be up-to-date for this decade, making it available to all women in Israel regardless of their native tongue,” Walsh told the Haaretz newspaper.

The OBOS global translation/adaptation program was recently featured in On the Issues magazine. The story explains how each international project is specific to the community’s health needs and social and political conditions.

We haven’t discussed the Israeli-Palestinian project in detail here before, so here’s some news about the effort.

WTB has more than 40 Hebrew and Arabic chapters in progress, and the goal is to publish the Hebrew edition in 2010. The Arabic edition will appear first online and as booklets — two of which will be published by the end of the year — with a book publication date to be announced soon.

The organization is working with Jewish and Arab groups to localize the material and has collaborated with numerous women’s and human rights organizations. WTB has also recruited teams of volunteers, Hebrew and/or Arabic-speaking, between the ages of 21 and 65, to conduct interviews for the personal narratives present in every chapter.

A graphics committee is charged with making sure that the book’s images are representative of women’s bodies in the Middle East and include women of varied religious and ethnic backgrounds. According to WTB’s 2008 annual report, dozens of women have already volunteered images, including those shown here.

In addition to the Arabic and Hebrew publications, WTB is creating an online action and resource center, with links to women’s organizations and blogs providing updates on health legislation.

The organization also runs community outreach workshops on women’s health rights and sexuality. Facilitator Suzaan Abu-Waasel led a workshop on women’s body image and empowerment for the older women’s club at the Arab Jewish Community Center in Jaffa. Here’s what she said at the end of the session:

Asking the women aged 45-60 to put their social commitments aside and focus on their own bodies and wellbeing, was an extremely challenging task. Much patience is needed to raise taboo topics.

Many of the participants focused on good parenting, or their relationships with their in-laws; the concept of taking care of ones’ self was rather alien at first … I am thrilled to tell you that their group coordinator now reports an overflow of critical discussions.

It costs approximately $5,000 to produce each chapter. If you and a group of friends or an organization want to sponsor a chapter in the Hebrew or Arabic adaptation, you can make a secure electronic donation, or write a check to “Women and Their Bodies,” and mail it to 34 Kfar Etzion St. Jerusalem, Israel 93392.

Smaller sums go directly to support sections of chapters, such as the narrative collection, or the linguistic editing in the chapter of your choice.

For a U.S. tax deduction (minimum $100), make out a check to “New Israel Fund.” Write in the memo line that it is a donor advised contribution to Women and Their Bodies – Fund ID #5459, and mail it to NIF, 1101 14th St, 6th Floor, Washington D.C. 20005-5639.

Let us know if you want additional information about this or other OBOS adaptations. Projects are currently also underway in China, India, Nepal, Nigeria, Russia, Tanzania and Turkey.