With all of the criticism of Komen’s defunding of Planned Parenthood last week, many people are starting to take a more critical look at the organization and its pink ribbon campaigns, asking how much good is really being done for women in breast cancer prevention, research, and treatment.

The timing seems perfect, then, for showings of “Pink Ribbons, Inc.,” a documentary film directed by Léa Pool that takes on corporate pink ribbon campaigns, pinkwashing, and what really happens as a result of this cause-related marketing.

Variety called the film “indignant and subversive,” saying it:

resoundingly pops the shiny pink balloon of the breast cancer movement/industry, debunking the ‘comfortable lies’ and corporate double-talk that permeate the massive and thus-far-ineffectual campaign against a disease that claims nearly 60,000 lives each year in North America alone.

Based on the trailer (below), I’m really looking forward to seeing it.

The film premiered at the Toronto International Film Festival last fall, and will be shown in several U.S. cities over the coming weeks and months, including San Francisco, D.C., Madison, and Nashville. It also opened in Canadian theaters last week.

Via Susan Love’s Army of Women project, we learned about a breast cancer research study headed by Boston University researchers that is currently recruiting lesbian and bisexual women. The goal of the study is to learn more about quality of life and well-being issues for lesbian and bisexual women who have been diagnosed with breast cancer, and to use that information to inform services and reduce health disparities.

From the email announcement:

It is widely known that a breast cancer diagnosis can have far reaching effects both socially and emotionally. Less well understood are the ways in which a breast cancer diagnosis impacts the well-being and quality of life of women who have historically been underserved by the medical community. Lesbian and bisexual women are one of these underserved populations, and little research has been done to assess their health and well-being as women with breast cancer. Identifying their unique needs by asking some questions in a survey will help researchers to develop culturally appropriate programs for these women.

The researchers are interested in hearing from all lesbian and bisexual women who have had a breast cancer diagnosis. They have a particular interest in women who have metastatic disease, recurrent disease, or an additional invasive cancer diagnosis, or are currently undergoing cancer treatment. If you have ever been diagnosed with breast cancer, please read on to learn more about what’s involved and who can participate.

Women have been diagnosed with breast cancer at some point their lives and identify as lesbian, bisexual, or as a woman who partners with women are eligible to participate. Participants will complete a 45 minute phone survey about their health, medical history, demographics, and sexual orientation.

Visit this page at Army of Women to learn more or sign up online to participate.

We’re delighted to see a piece on our recent 40th anniversary global symposium in The Women’s Health Activist, the newsletter of one of our favorite organizations, the National Women’s Health Network. In The Spiral of Women’s Health Activism, NWHN Program & Policy Director Amy Allina talks a bit about our history and reports on panels and presenters from the day, remarking:

Early in the day, Jaclyn Friedman, the symposium’s mistress of ceremonies, explained her belief that women’s health activism moves in a spiral, not a circle, because while we are connected to our beginnings, we are also continually moving forward. The day’s discussions provided a perfect demonstration of that concept.

If you weren’t able to join us for those discussions, check out video from the event, including presentations from Byllye Avery, Loretta Ross, a welcome message from Governor Patrick Deval, panels with our global partners, and more.

If you haven’t checked out the NWHN site lately, go take a look – it has been redesigned to a spiffy new look, with news and blog posts, connections to social media, and lots of great information about the organization and the health issues they work on.

Last night, President Obama delivered his third State of the Union address, describing accomplishments and challenges facing his Presidency and the nation. Earlier this month, and garnering much less attention, the administration released an accounting of its efforts to reduce healthcare inequality for lesbian, gay, bisexual and transgender (LGBT) persons, and challenges still to be tackled.

Among the accomplishments, HHS Secretary Sebelius lists the development of an Institute of Medicine report on LGBT health, a rule requiring hospitals to accept patients’ wishes for who can visit them “regardless of sexual orientation, gender identity, or any other non-clinical factor,” inclusion for the first time of LGBT health concerns in the nation’s Healthy People goals, anti-bullying efforts, and policies and funds to encourage shelters for homeless young people to be properly equipped to provide services to LGBT youth.

Several items for future action were also listed, including promoting “cultural competence” training for healthcare providers to improve care to LGBT patients, guidance to state child welfare agencies on how to better support LGBT young people, and better data collection on sexual orientation and gender identity in health data collection processes in order to better understand and approach health disparities.

There’s a long way to go – a 2010 report indicated that nearly 1/3 of transgender men and women had avoided getting medical care because of discrimination, and about 1 in 5 had been refused care due to their transgender or gender non-conforming status. Lesbian and bisexual women are thought to be at higher risks of heart disease because of higher rates of obesity, smoking, and stress – which may in turn be related to discrimination faced in healthcare systems and society in general. The IOM report mentioned above reminds us that LGBT folks face “a profound and poorly understood set of additional health risks due largely to social stigma.”

Let us hope that in the coming year, as President Obama stated last night about the nation, the state of our LGBT health will be getting stronger.

For an overview of LGBT human rights and discrimination around the globe, see this United Nations report published last November.

Today, HHS Secretary Kathleen Sebelius issued a statement finalizing the rule that requires insurance plans to provide coverage for contraception without charging a co-pay, co-insurance or a deductibles.

It wasn’t always a sure deal. Back in August, HHS adopted the Institute of Medicine’s recommendation to include family-planning services as one of the preventive health care items for women that must be covered by newly issued health plans, but it was only an interim rule, subject to comments.

In November, there was a lot of worry about whether the decision that contraception should be a covered preventive service under the Affordable Care Act would survive. President Obama met with Roman Catholic bishops, and one of them came away saying, “I left there feeling a bit more at peace about this issue than when I entered.”

Understandably, many people expressed concerns that the administration was going to back away from birth control coverage requirements and broaden the refusal rule to allow Catholic hospitals and universities to refuse to cover family planning services. But the administration rejected calls allowing employers to opt out of covering contraception. The statement by Sebelius reads in part:

After evaluating comments, we have decided to add an additional element to the final rule. Nonprofit employers who, based on religious beliefs, do not currently provide contraceptive coverage in their insurance plan, will be provided an additional year, until August 1, 2013, to comply with the new law. Employers wishing to take advantage of the additional year must certify that they qualify for the delayed implementation. This additional year will allow these organizations more time and flexibility to adapt to this new rule. We intend to require employers that do not offer coverage of contraceptive services to provide notice to employees, which will also state that contraceptive services are available at sites such as community health centers, public clinics, and hospitals with income-based support. We will continue to work closely with religious groups during this transitional period to discuss their concerns.

Scientists have abundant evidence that birth control has significant health benefits for women and their families, it is documented to significantly reduce health costs, and is the most commonly taken drug in America by young and middle-aged women. This rule will provide women with greater access to contraception by requiring coverage and by prohibiting cost sharing.

Starting today through Jan. 27, the Trust Women/Silver Ribbon Campaign and MoveOn are collaborating with more than 50 organizations, including Our Bodies Ourselves, in holding an online virtual march to let legislators know that reproductive health, reproductive justice and reproductive rights are at the top of our agenda, and should be at the top of theirs.

Why the massive collaborative push now? As eloquently explained by Ellen Shaffer of the Center for Policy Analysis:

In 2011, a record numbers of bills were introduced or passed by state legislatures and the U.S. House of representatives restricting women’s access to: basic health care services, family planning, and safe abortion care. It has been called a “War on Women,” Many women are shocked and dismayed by these attacks and want to send a strong message to policy-makers: Government should stay out of making decisions about what happens in my womb. I have self-determination, autonomy.

The Guttmacher Institute has more detailed coverage of the abortion restrictions enacted in 2011, noting that legislators across the country “introduced more than 1,100 reproductive health and rights-related provisions, a sharp increase from the 950 introduced in 2010. By year’s end, 135 of these provisions had been enacted in 36 states, an increase from the 89 enacted in 2010 and the 77 enacted in 2009.”

If you, too, have had enough, add your name and location to a map, along with one of six messages like, “I Trust Women and I Vote,” “Reproductive Rights are Human Rights,” and “Contraception is Prevention.” If you watch the map, new names pop up in real time as more people sign on.

The next steps of this national action, as explained by Our Silver Blog, involve sending messages from virtual marchers directly to members of Congress, governors and state legislators “to underscore that Americans trust women to make their own decisions about their bodies and their lives.”

Please join all of us concerned about women’s health and rights by signing on to the march, and sharing info about the event with your friends via Facebook and Twitter.

Breast Cancer Action is hosting free one-hour webinars on Tuesday, January 24th and Wednesday, January 25th to discuss the recent Institute of Medicine report on environmental risks for breast cancer, including how advocates can help move forward the report committee’s recommendations for better understanding and managing these risks.

BCA will discuss some of their concerns about the report, as well as focus policy changes required to reduce exposures to potentially cancer-causing agents.

The report, commissioned by Komen, explores the difficulties of studying how environmental factors affect breast cancer risk, recommends future research, and makes recommendations for steps women can take to reduce their breast cancer risk. Unfortunately, many of the clear actions provided in the report for reducing risk are well-covered things like “quit smoking,” while the strongest conclusion that could be drawn on many other exposures (like cosmetic and personal care products, plastics and other pollutants) was that more research was needed.

If you’re interested, you can register for register for 2pm-3pm (PST) on the 24th or 10am-11am (PST) on the 25th.

Last week we posted about the Trust Women/Silver Ribbon campaign banners placed around Market Street in San Francisco carrying messages like “Reproductive Rights are Human Rights” and “Her Decision, Her Health.”

Today, the Huffington Post reports that the banners have drawn attacks from the anti-choice Life Legal Defense Foundation, which has threatened to sue the city for allowing the banner poles to be used to promote a political message not related to a specific event.

In response, Department of Public Works Spokeswoman Gloria Chan:

…defended her agency’s decision to allow the Center for Policy Analysis to buy space on the poles, saying that the banners are running in conjunction with two events: the Walk for Trust Women scheduled to take place on Market Street on January 20th and the The Bay Area Coalition For Reproductive Rights’ West Coast Rally For Reproductive Justice slated for Justin Herman Plaza the following day. Chan noted that any event expected to draw over 500 people, which DPW officials expect both of these to do easily, qualifies as a “city-wide special event” and is permitted to have its ads posted.

For more on the banners, including links to pictures, see our previous post.

A reminder: an online Virtual March will be held with MoveOn during Trust Women Week, January 20-27, to express support for reproductive health, rights, and justice, and to send pro-choice messages to Washington. Look for more details on the Our Silver Ribbon blog.

Our Bodies Ourselves is one of 42 partners in the Trust Women/Silver Ribbon campaign, a project to increase the visibility of pro-choice messages.

Our Bodies Ourselves is one of 42 partners in the Trust Women/Silver Ribbon campaign, a project to increase the visibility of pro-choice messages.

This week, the campaign has placed banners along Market Street in San Francisco to “spark conversations and to help build momentum and solidarity among supporters of women’s rights, equality and autonomy and access to comprehensive health care, including reproductive health care services.”

The banners display messages like “Reproductive Rights are Human Rights,” “Her Decision, Her Health,” and “U.S. Out of My Uterus,” and include related banners from the Bay Area Coalition for Our Reproductive Rights, SisterSong/Trust Black Women, Catholics for Choice, NARAL-ProChoice California, and Planned Parenthood Shasta Pacific. More photos of the banners in place around San Francisco are online, and more coverage is provided at Our Silver Blog.

Look for more activity later this month – during Trust Women Week, January 20-27, a virtual march will be held with MoveOn to express support for reproductive health, rights, and justice, and to send pro-choice messages to Washington.

The U.S. Food and Drug Administration (FDA) is seeking public comment on a draft guidance intended to define expectations about inclusion of women* in medical device research, including making sure women are represented in clinical trials and that data on women’s outcomes with devices should be collected and reported. Medical devices include products like contact lenses, coronary stents and pacemakers, breast and hip implants, prostheses, and other equipment for diagnosis and therapy.

The FDA is the agency that approves medical devices for use/marketing in the United States, so we would expect them to ask about these issues and data when companies propose that a device be approved.

This is meant to improve how risks and benefits of medical devices can be understood and communicated to women, and to encourage researchers to consider how sex-related differences may affect women’s outcomes when using medical devices.

For example, according to an evaluation of studies used to seek approval for heart-related devices, there was “persistent underrepresentation” of women – only about 1/3 of the study participants were women. Studies of certain existing heart devices have already found increased risks of adverse effects in women for some products, and possible better outcomes for women using some other devices.

Comments are due before midnight (Eastern time) on March 12, 2012. They can be submitted online, or via mail to the Division of Dockets Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852. If you write a paper letter, you should include the docket number: FDA-2011-D-0817.

*Note: the language used in the FDA documents defines female sex “according to their reproductive organs and functions assigned by chromosomal complement,” and gender as provided by patient/participant self-report.

You may have seen recent news coverage along the lines of “BRCA variants not tied to worse cancer outcomes.” This story refers to a recently published study about changes in the BRCA1 and BRCA2 genes that affect breast and ovarian cancer. Women with mutated versions of the genes have greater risks of breast and ovarian cancer than women with typical versions of the genes.

In the new study in the Journal of Clinical Oncology, researchers tried to figure out whether women with BRCA1 or BRCA2 mutations who do develop cancer have worse outcomes than women without the mutations. They compared records for women with breast cancer and one of the mutations with those of women with breast cancer who did not have these gene changes.

Overall, they found that women with BRCA1 mutations had similar rates of metastatic (“distant”) cancer recurrence and death as women without it. Women with BRCA2 mutations had higher risks of recurrence and death, although the risk was similar when the women got adjuvant therapy (additional treatment to help prevent recurrences). Other factors like age and stage of the cancer also made a difference.

However, this study should be interpreted with caution. Bigger studies are probably still needed to properly understand any effects of these genes on women’s cancer therapy outcomes. The similarity of outcomes between women with and without the mutations may have to do, in part, with what we have learned about therapies for women with those mutated genes – which therapies don’t work as well for them, and which therapies might be added on for better outcomes. The researchers for the current study do say that women with mutated BRCA1/2 genes were more likely to have received adjuvant therapy, and the authors were unable to look at women’s results by how much chemotherapy they received.

While women who have BRCA1/2 mutations may be advised to have earlier or more frequent cancer screenings than other women, it’s not yet completely clear who should get tested for these mutations or if women should be tested once they’re diagnosed with breast or ovarian cancer.

As we learn more about how our genes affect our cancer risks and therapy outcomes, I expect we’ll see more and more news on these topics, and it may take some time to figure out how to assess risk, guide cancer therapies, and how our outcomes change based on this knowledge. Here are a few helpful resources for this growing area of study:

• Genetics Home Reference – Cancers – information from the National Library of Medicine on genes related to a number of cancers
• General Cancer Genetics Information – information from the National Cancer Institute on genetic (hereditary) risks for cancer, gene testing, a dictionary of genetics terms, and other resources
• My Cancer Genome – information intended to help inform physicians about tumor (not hereditary) genes and their effect on cancer therapy. Disclosure: I work with the team that produces this site.

A Doctor of Psychology candidate at Deakin University in Australia who is working on her thesis about the connection between a woman’s body image and her sense of well-being contacted us with a request to share a link to the online questionnaire where women 18 and older can participate in her research.

The questionnaire will ask you about how you feel about your body, behaviors related to your body, and how you feel about yourself in general. You can complete it online and they estimate that it should take no more than 20-30 minutes to complete.

The survey includes some questions about sexual orientation, height, and weight, as well as your satisfaction with specific parts and areas of your body and how much you think you resemble your “ideal” body. The researchers do mention that “The completion of this study may result in increased self-awareness regarding your attitudes and feelings about your body, yourself, and your life. For some individuals, this self-awareness may produce…discomfort.” Information about how your responses will be kept private is also provided on the website.

Last week, we wrote about a controversial decision by HHS Secretary Kathleen Sebelius, who overruled the FDA’s decision that emergency contraception should be made available over the counter to women of all ages.

On Friday, former FDA official Susan Wood issued her response to the move in the Washington Post, rejecting Sebelius’s claim that more data is needed on safety and label comprehension for the youngest of possible emergency contraception users:

…this type of age restriction, and worries about the use of medicines by teenagers, have not been applied to other products…Indeed, for no other over-the-counter medication has the FDA ever required extra data for a particular age group. (This extra data on younger teenagers was provided to the FDA in the latest application by the company.)

But somehow, the prescription requirement for Plan B — which is very safe and impossible to overdose on — remains in place for those younger teens who are in the unfortunate situation of being at risk of pregnancy and who need emergency contraception immediately.

Wood also notes that because the age restriction remains, access for older women remains restricted – emergency contraception is available without a prescription for those over 17, but is still behind a pharmacy counter.

Wood previously served as assistant FDA commissioner for women’s health and director of the Office of Women’s Health. She resigned in 2005 because of past politically motivated delays in emergency contraception approval, stating at that time:

I can no longer serve as staff when scientific and clinical evidence, fully evaluated and recommended for approval by the professional staff here, has been overruled.

Now, Wood calls out Obama for breaking his promise to the American people by allowing this overruling:

In his scientific integrity memo, the president stated: “When scientific or technological information is considered in policy decisions, the information should be subject to well-established scientific processes, including peer review where appropriate, and each agency should appropriately and accurately reflect that information in complying with and applying relevant statutory standards.”

In overturning the well-considered, scientifically based decision of the FDA, Sebelius and the Department of Health and Human Services certainly did not “appropriately and accurately reflect” the available scientific information…The president should stand by the principles of scientific integrity and restore science to its rightful place. He should support the FDA commissioner and direct the secretary to allow the agency to do its job. By doing so he will fulfill the promise of that beautiful day in March 2009 when he pledged that science would trump politics, not the other way around.

If you would like to write President Obama to object to Sebelius’s action and remind him to remember his promise about scientific integrity, you can contact the White House directly via this online form.

Yesterday, Health and Human Services head Kathleen Sebelius interfered with the FDA’s decision that emergency contraception could safely be made available over the counter (OTC) without a prescription to women and girls of all ages.

The drug is already available without a prescription for women 17 and older, after years of political wrangling. Advocates have worked to ensure OTC access because emergency contraception is most effective when used as soon as possible, and time, distance, money, and privacy can be serious barriers to getting a prescription and obtaining the drug in time to prevent pregnancy.

The FDA’s Center for Drug Evaluation and Research (CDER) had completed a review of the issue and concluded that Plan B One-Step emergency contraception should be available OTC to younger women, which Commissioner Margaret Hamburg explains:

Based on the information submitted to the agency, CDER determined that the product was safe and effective in adolescent females, that adolescent females understood the product was not for routine use, and that the product would not protect them against sexually transmitted diseases. Additionally, the data supported a finding that adolescent females could use Plan B One-Step properly without the intervention of a healthcare provider…CDER experts, including obstetrician/gynecologists and pediatricians, reviewed the totality of the data and agreed that it met the regulatory standard for a nonprescription drug and that Plan B One-Step should be approved for all females of child-bearing potential.

That’s when Sebelius stepped in and blocked the findings of CDER from taking effect. In her letter [PDF] overruling the FDA’s findings, Sebelius objected that “The label comprehension and actual use studies submitted to the FDA do not include data on all ages for which the drug would be approved and available over-the-counter.”

That data is not available for the vast majority of over-the-counter drugs on sale to all age groups without a prescription. Many OTC drugs (like acetominophen and aspirin) can have serious, even fatal, effects if taken inappropriately because of deliberate misuse or misunderstanding the label and instructions. You will not find data on safety and label comprehension for every possible age group for these medicines, yet they are readily available OTC in adult doses to consumers of any age.

Former FDA official Susan Wood – who resigned after a previous round of political interference in emergency contraception – agrees:

“They don’t do this for pain medication, headache medication, cold medication,” she said. “That’s not part of how we assess products. Are we going to go and now do this with all products, or are contraceptives once again being singled out for this special treatment and this extra standard when we’re talking about a very safe and very effective product that can really help women?”

Change.org has a petition up urging Sebelius not to let politics trump science, and objecting to the HHS leader’s focus on very young girls who may access the drug:

The fact that the HHS and the Secretary are focusing on this extremely young age group is bizarre. Less than 1% of 11 year olds are sexually active, where over half of adolescents have had sex before their 17th birthday.

This decision is illogical and unfounded. Physicians around the country agree that Plan B is incredibly safe and effective for all ages, helping to decrease the number of unintended pregnancies.

Further reading:
This NPR coverage provides a succinct timeline and political explanation of the controversy over accessibility of emergency contraception.

Statement from Physicians for Reproductive Choice and Health stating that the Obama administration’s “put[ting] politics before science and responsible health policy…is appalling.”

Heather Corinna at Scarleteen urges young people to speak up in protest of this action.

Jodi Jacobson at RH Reality Check, who reminds us that the previous administration wasn’t the only one playing political games with reproductive rights:

…no amount of proof it seems can make up for the fact that, despite all the evidence, even President Obama and Secretary Sebelius appear to think young women are too stupid to make their own decisions or that they are just chum to be thrown to the religious right in an election year. As the saying goes, with friends like these, who needs the far right?

We are delighted that Library Journal, a source of book reviews and professional information for librarians, has named the new Our Bodies Ourselves 40th anniversary edition one of its Best Books 2011 in the consumer health category.

Library Journal notes the incorporation of global perspectives and says the updated and revised title is “aging superbly.” Other recent mentions in the journal have called the edition “essential for public and medical libraries,” and “…still the bible for women’s health; an outstanding resource that belongs in all health collections.”

We’re always excited to get some love from the library community. In fact, the chapter on Navigating the Health Care System includes the following mention of librarians and libraries alongside other information about accessing and evaluating health information:

Increasingly, people can obtain access to research studies and other professional publications such as clinical guidelines through open access journals, through public access articles, or by requesting articles from a library. One benefit of using a library is that a trained librarian may be able to search for you or show you how to make the best use of databases. Some hospitals or treatment centers have libraries and services to help patients learn more about their condition. State universities with medical schools are often required to make their medical libraries open to the public, and the medical librarians at those institutions can offer expert assistance.

Still need to buy a copy of the new edition for yourself, a gift, or your library? Check out our information about online ordering and clinic discounts!