Angelina Jolie certainly has good intentions in sharing her experience with breast cancer genetic testing and her decision to have a prophylactic mastectomy, and her announcement marks another welcomed example of well-known women coming forward about personal health issues.

But it is now up to women’s health advocates to ensure that the media coverage and public debate that follows does not offer false information or false hope — which I fear it will, if women are not fully informed about all the issues involved before imagining that Jolie’s decisions would be the right ones for them.

Already, women in the United States undergo a higher rate of mastectomies than women in other countries. “Breast cancer experts believe that many women undergoing mastectomies don’t need them and are getting them out of fear, not because of the real risks,” Diana Zuckerman, president of both the National Research Center for Women and Families and the Cancer Prevention and Treatment Fund, wrote this week.

First, women need to remember that BRCA1 and BRCA2 mutations occur in less than 1 percent of the population. To decide whether testing for breast cancer genetic mutations makes sense for them, it is important to speak with a knowledgeable health care provider. According to the National Cancer Institute:

The likelihood that a breast and/or ovarian cancer is associated with a harmful mutation in BRCA1 or BRCA2 is highest in families with a history of multiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors that develop at different sites in the body), or an Ashkenazi (Central and Eastern European) Jewish background. However, not every woman in such families carries a harmful BRCA1 or BRCA2 mutation, and not every cancer in such families is linked to a harmful mutation in one of these genes. Furthermore, not every woman who has a harmful BRCA1 or BRCA2 mutation will develop breast and/or ovarian cancer.

The steep price tag of testing, around $3,300, is of concern, though some women considered appropriate candidates for testing may be covered, all or in part, through their insurance. Under the Affordable Care Act, genetic counseling and BRCA testing, if appropriate, are considered preventive services and are covered without cost-sharing.

If a woman does seek testing, she needs to consider the pros and cons of all possible approaches to positive test results. While a bilateral mastectomy reduces the risk of getting the disease by 90 percent, about 10 out of 100 women who have their breasts removed will still get breast cancer in the underlying tissue. And there are numerous potential problems with such surgery that need to be fully discussed, such as infection and mobility impairment.

For those who choose this radical surgery, there is also the decision about whether to pursue breast reconstruction and, if so, what kind. Despite widespread assumptions to the contrary, there are major unresolved safety issues, especially for silicone breast implants.

Some women choose to forgo reconstruction entirely, though most media fail to mention this. The truth is, some women have no problems with their “breastless” bodies, nor do their sexual/intimate partners. Some women also find that modern prostheses are comfortable and offer a satisfying appearance.

Moreover, not all choices — even what might be ideal in a given circumstance — will be possible given financial constraints and lack of adequate medical coverage or support. As Cheryl Lemus, managing editor of Nursing Clio, a blog on gender and medicine, writes:

In order for all women to have the right to red carpet healthcare [...] then all women don’t just need money and insurance, but also the other resources Jolie highlighted in her op-ed, which include the supportive partner/spouse, family, an understanding employer, reliable transportation and childcare, and “time” in general.

Sadly, we know this is often not the case.

We also need to be honest about what we know and don’t know about breast cancer and risk. According to the NCI, women who have inherited a harmful mutation in BRCA1 or BRCA2 gene are approximately five times more likely to develop breast cancer than women who do not carry the mutation.

The way the numbers break down, about 12 percent of the general population — or about 120 women out of 1,000 — will develop breast cancer at some point during their lives, compared with about 60 percent — 600 out of 1,000 — who have inherited a harmful BRCA1 or BRCA2 gene mutation.

Yet there are other factors, such as environmental exposure, that influence breast cancer risk. Some women living in communities with high levels of toxic exposure may have elevated breast cancer risk for a non-heritable reason.

The NCI also notes that the risk factor for those carrying the mutated gene is based on research on large families in which many individuals have been affected by cancer. We still have many questions to answer about genetic and environmental influence:

Because family members share a proportion of their genes and, often, their environment, it is possible that the large number of cancer cases seen in these families may be due in part to other genetic or environmental factors. Therefore, risk estimates that are based on families with many affected members may not accurately reflect the levels of risk for BRCA1 and BRCA2 mutation carriers in the general population. In addition, no data are available from long-term studies of the general population comparing cancer risk in women who have harmful BRCA1 or BRCA2 mutations with women who do not have such mutations. Therefore, the percentages given above are estimates that may change as more data become available.

This heightened interest in breast cancer genetic testing caused an uptick in the stock of Myriad Genetics, which has a monopoly on BRCA1 and 2 testing. OBOS is a co-plaintiff in the lawsuit challenging Myriad Genetic’s patenting of human genes, along with the ACLU, Breast Cancer Action, a number of scientific organizations and researchers, and Lisbeth Ceriani, a single mother whose circumstances led her to seek breast cancer genetic testing and who felt stymied by Myriad’s monopoly.

The Supreme Court heard arguments in the case last month and is expected to issue a ruling this summer. Its decision will have a major impact on whether or not scientists will be able to improve upon the current test as well as the future price tag for such testing. In the meantime, let’s hope that thousands of women don’t make hasty decisions about testing and treatment without careful consideration of all the issues involved.

As Zuckerman writes:

As an actress whose appeal has focused on her beauty, surgically removing both her breasts when she didn’t have cancer was a very gutsy thing to do. But if we care about women’s health, we need to stop thinking of mastectomy as the “brave” choice and understand that the risks and benefits of mastectomy are different for every woman with cancer or the risk of cancer. In breast cancer, any reasonable treatment choice is the brave choice.

On Monday, the Supreme Court heard oral arguments in the lawsuit against Myriad Genetics, challenging the company’s right to hold patents on  two genes linked to increased risk of breast and ovarian cancer: BRCA1 an BRCA2.

The primary concern — which Our Bodies Ourselves, a co-plaintiff in the case, shares – is that human genes shouldn’t be patentable because they occur in nature. Allowing the patents restricts access to testing and research on these genes, and negatively affects women’s health.

Nina Totenberg, in her coverage for NPR, highlights the significance of the Court’s decision, expected later this year: “There is no way to overstate the importance of this case to the future of science and medicine.”

The oral arguments boiled down to two key opposing points. The attorney for the Association for Molecular Pathology and other plaintiffs in the case argued that the genes cannot be patented because they are found in nature. The attorney for Myriad Genetics essentially argued that because the company found and isolated the gene, it should be able to patent it. There was a great deal of discussion about this point, with analogies such as whether finding and removing a plant from the Amazon should entitle someone to patent that plant as an “invention.”

Major medical organizations have argued that the patents force people in the United States to “undergo tests that are inferior to and more costly than those available in other countries,” with the consequence that “no woman in America can get an independent second opinion about her condition before deciding to have her healthy breasts or ovaries removed in order to avoid cancer.”

In explaining the consequences of allowing the patents, the ACLU has written:

The patents on BRCA1 and BRCA2 are harmful to patients and create barriers to medical and scientific advancement. Myriad has a monopoly on BRCA genetic testing in the U.S. and therefore controls the type and price of testing. Thus, while genetic testing technologies have advanced to the point where all 23,000 human genes can be sequenced for $1000, Myriad has raised its price for BRCA genetic testing to over $4000 in the last few years and still does not capture all known BRCA mutations. Other laboratories cannot provide second opinions, and they cannot include the BRCA genes when offering testing of the multiple genes that are now associated with breast and ovarian cancer risk. Gene patents also have a chilling effect on research. Researchers must either obtain permission from the patentholder, or run the risk of being sued. And by virtue of its patents, Myriad controls most of the data about the BRCA genes and has refused to share that information with the scientific community.

Reporting from the courtroom, Breast Cancer Action praised those who made their voices heard in opposition to the patents:

It was a thrill to meet so many wonderful people working hard for women’s health, and it was incredibly moving to hear from the powerful women who stood up to tell their personal stories. We know that Myriad’s patents on our genes are wrong, and we hope that the Supreme Court will take this opportunity to come down on the right side of women’s health.

More coverage of the case:

• SCOTUSblog: First Myriad reactions; Argument recap: Analogies to the rescue; Justices debate gene patenting issues: In Plain English
• More from Nina Totenberg at NPR: Justices Appear Skeptical Of Patenting Human Genes
• PBS NewsHour: Supreme Court Tackles Case of Patent Law, Human Genetics
• The ACLU provides an overview of the case, timeline, and other background on their website.

For further information and resources, see OBOS’s previous posts:

• OBOS Joins ACLU Lawsuit Challenging Breast and Ovarian Cancer Gene Patents
• Breast Cancer Gene Patents Invalidated
• Take Back Our Genes Campaign Fights Restrictive Gene Patenting
• ACLU Survey for Women Who Have Been Advised to Get BRCA Genetic Testing

There’s been much discussion lately about routine mammogram screening for breast cancer, including, according a new study, the very real psychological harm connected to false positive readings.

Complicating this information further is the issue of breast density. Dense breasts have less fat and more glandular and connective tissue. While some women’s breasts become less dense and more fatty as they age, other women’s breasts remain relatively dense.

Why does this matter? Having dense breast tissue makes it harder to obtain an accurate reading of mammograms. It also increases a woman’s risk of developing breast cancer.

However, questions remain about what women should do with that information. In fact, recent research suggests that actual risk of death from breast cancer is not increased for women with denser breast tissue.

Despite a lack of certainty about how dense breast tissue affects health outcomes, a handful of states have mandated that providers discuss breast density with women. On April 1, California will become the fifth state with a breast density notification law in place. Similar bills have been introduced in other states.

At the federal level, the Breast Density and Mammography Reporting Act was introduced in Congress in 2011, but never made it out of committee. It, too, would require that women be told about breast density, the correlation with cancer, and that they might benefit from supplemental screening tests.

It’s not clear, however, if additional tests would even help.

The authors of a recent commentary in the medical journal Radiology note that while explaining the increased risk of cancer to women with dense breasts “seems ethical, reasonable, and appropriate,” there is little known about what additional follow-up might help those women.

They conclude that “the advocacy push to legislate mandatory reporting of breast density and possible adjunct screening for all women with heterogeneously or extremely dense breasts is far outpacing the reporting of evidence that supplemental screening may provide better outcomes for these patients.”

They also raise concerns about invasive procedures: “Because some cancers detected at screening may not go on to cause symptoms or death, additional interventions performed on these excess cancers would only increase morbidity for these patients.”

These concerns are similar to those raised about routine mammography in younger women — that more testing may increase harm to women from extra procedures, while not actually increasing survival rates.

Breast Cancer Action addressed mandatory notification laws in late 2012, coming down against such legislation:

Unfortunately, the importance of breast density is still not well understood and as a result there is no clear action for women who receive this information. Breast Cancer Action believes that medical practitioners should discuss all aspects of a woman’s health with her and we do not believe legislation is the appropriate way to address the issue of breast density. We believe resources and energy are better spent on working for better medical care and understanding the ways to prevent breast cancer in the first place.

Laura Newman, a medical journalist, has also looked at this issue. Her Patient POV blog has a couple of clear, useful posts, including “Are Dense-Breast, Right-to-Know Laws Helpful?” and “Is the Bar High Enough for Screening Breast Ultrasounds for Dense Breasts?”

Where does this leave women, especially those who may be told they have dense breast tissue as a result of one of these new laws? Unfortunately, there is no clear answer right now.

Arguments are scheduled to be heard by the Supreme Court on April 15 on the Myriad Genetics case, which will challenge patents held on human genes, especially the BRCA1 and BRCA2 genes known to increase breast cancer risk.

The suit charges that leaving human genes in the hands of corporations limits diagnostic testing and research that could lead to cures, and limit women’s options for medical care.

Breast Cancer Action is holding a rally on April 15, the day the case is heard, to stand up for women’s health and against corporate control of our genes. It begins at 9:30a.m and will take place on the steps of the Supreme Court. To find out more, follow @BCAction on Twitter.

Our Bodies Ourselves is a co-plaintiff in the lawsuit challenging these gene patents. For further information and resources, see these previous posts:

• OBOS Joins ACLU Lawsuit Challenging Breast and Ovarian Cancer Gene Patents
• Breast Cancer Gene Patents Invalidated
• Take Back Our Genes Campaign Fights Restrictive Gene Patenting
• ACLU Survey for Women Who Have Been Advised to Get BRCA Genetic Testing

The topic of routine screening mammography has become extremely controversial in recent years, especially following publication of a 2009 evidence review and subsequent U.S. Preventive Services Task Force recommendation that mammography be considered on an individual basis for women in their 40s, rather than automatically recommending mammograms for all women in that age group.

A new study published in the New England Journal of Medicine adds to the questioning of routine mammograms, concluding that “whatever the mortality benefit, breast-cancer screening involved a substantial harm of excess detection of additional early-stage cancers that was not matched by a reduction in late-stage cancers.”

The authors looked at data on how many women age 40 or older had screening mammograms and the incidence of early and late stage breast cancers. The assumption is that if widespread mammography is really helping to catch cancers at earlier, presumably more treatable stages, we’ll see fewer of those late stage breast cancers.

What they actually found was a large increase in detection of early cases (122 per 100,000 women), but a much smaller decrease (8 per 100,000 women) in late cases.

If mammograms were simply shifting diagnosis earlier, they should have seen about the same number for the increase in early cases and decrease in later cases. Instead, it resulted in diagnosis of numerous extra early cases that might not have progressed to more serious disease and would be considered over-diagnosis (with the corresponding over-treatment).

The researchers conclude that “the excess detection attributable to mammography in the United States involved more than 1.3 million women in the past 30 years.”

The authors did find that the death rate attributable to breast cancer had decreased over the last three decades, but they suggest that improvements in treatment over the last few decades may be primarily responsible.

As Dr. Diana Petiti, former vice chair of the USPSTF, explained in an email exchange:

Not all breast cancers detected by mammography would have caused a lump. Some breast cancers detected by mammography (we don’t know how many) revert to normal. Some breast cancers detected by mammography (we don’t know how many) don’t grow to the size of a lump. Some breast cancers detected by mammography (we don’t know how many) grow so slowly, they would not cause a lump in the forseeable lifespan of a woman.

Further not all lumps found by a woman (without mammography) would have caused death from breast cancer. Some breast cancers found as lumps (without mammography) are cured by treatment. Some breast cancers found as lumps (without mammography) grow so slowly that they never cause death due to breast cancer (which occurs because the cancer spreads). Some breast cancers found as lumps (with or without mammography) occur so late in life that something else causes death before the breast cancer spreads and causes death.

The newest data suggests that a not-small percentage of the breast cancers detected by mammography (without a lump) would not have killed the woman from breast cancer had it not been found.

While this is a complicated topic, this New York Times op-ed by Dr. H. Gilbert Welch, one of the authors of study published in NEJM, does a reasonable job of explaining it clearly. Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice and an author of “Overdiagnosed: Making People Sick in the Pursuit of Health,” includes this call for change:

What should be done? First and foremost, tell the truth: woman really do have a choice. While no one can dismiss the possibility that screening may help a tiny number of women, there’s no doubt that it leads many, many more to be treated for breast cancer unnecessarily. Women have to decide for themselves about the benefit and harms.

But health care providers can also do better. They can look less hard for tiny cancers and precancers and put more effort into differentiating between consequential and inconsequential cancers. We must redesign screening protocols to reduce overdiagnosis or stop population-wide screening completely.

Dr. David Newman, an emergency room physician in New York City and author of the book “Hippocrates Shadow: Secrets from the House of Medicine,” tackles the controversy head-on in a column titled ”Ignoring the Science on Mammograms“:

For years now, doctors like myself have known that screening mammography doesn’t save lives, or else saves so few that the harms far outweigh the benefits. Neither I nor my colleagues have a crystal ball, and we are not smarter than others who have looked at this issue. We simply read the results of the many mammography trials that have been conducted over the years. But the trial results were unpopular and did not fit with a broadly accepted ideology—early detection—which has, ironically, failed (ovarian, prostate cancer) as often as it has succeeded (cervical cancer, perhaps colon cancer).

More bluntly, the trial results threatened a mammogram economy, a marketplace sustained by invasive therapies to vanquish microscopic clumps of questionable threat, and by an endless parade of procedures and pictures to investigate the falsely positive results that more than half of women endure. And inexplicably, since the publication of these trial results challenging the value of screening mammograms, hundreds of millions of public dollars have been dedicated to ensuring mammogram access, and the test has become a war cry for cancer advocacy. Why? Because experience deludes: radiologists diagnose, surgeons cut, pathologists examine, oncologists treat, and women survive.

Newman also notes that mammography is not the only area of medicine ripe for questioning:

It is normally troubling to see an observational study posing questions asked and answered by higher science. But in this case the research may help society to emerge from a fog that has clouded not just the approach to data on screening mammography, but also the approach to health care in the United States. In a system drowning in costs, and at enormous expense, we have systematically ignored virtually identical data challenging the effectiveness of cardiac stents, robot surgeries, prostate cancer screening, back operations, countless prescription medicines, and more.

To further explore this topic, listen to this WBUR Boston (NPR) segment with Dr. Welch, Judy Norsigian, OBOS founder and executive director, and Dr. Otis Brawley, chief medical officer at the American Cancer Society. Norsigian also wrote a column for WBUR’s Cognoscenti section, “Do Screening Mammograms Do More Harm Than Good?“

A sweeping U.S. study published on Nov. 22, 2012 in the New England Journal of Medicine shows that mammograms have done surprisingly little to catch deadly cancers before they spread. At the same time, they have led more than a million women to be treated for growths that never would have threatened their lives. 

Women over 40 are routinely advised to have yearly mammograms, and it’s widely believed that having one is key to protecting a woman’s health.

Although experts agree that diagnostic mammograms are beneficial (cases where there is a breast lump or other symptoms), there is much controversy about screening mammograms, which are performed on women with no signs of cancer. Mammograms detect breast cancer, although many people believe mistakenly that they prevent breast cancer. We now know that the mortality benefits remain quite small.

Eight trials performed in the United States, Canada and Europe have evaluated the ability of screening mammograms to decrease the death rate from breast cancer, as well as overall mortality. Looking at the overall death rate, not just death from breast cancer, is essential, because this approach also evaluates whether the screening test and any subsequent treatment may be causing other harms.

Overall, the early studies showed a 30 percent reduction in the risk of dying from breast cancer in women who were screened by mammography. In 2001, a critical review of all eight trials by the Cochrane Collaboration found that six of them were sufficiently flawed to invalidate their results. The Cochrane Collaboration then pooled the results of the two remaining studies and found no evidence to support the use of screening mammography.

The U.S. Preventive Services Task Force (USPSTF) evaluated the trials also. Although recognizing many of the same flaws, the USPSTF felt only one trial was sufficiently flawed to be invalidated. They pooled the results of the remaining trials and found a 16 percent reduction in the risk of dying of breast cancer in the women in the screened group.

The meta-analysis published in 2006 by the Cochrane Collaboration confirmed that screening does slightly reduce breast cancer mortality, but that it also leads to over-diagnosis and overtreatment of breast cancer. They concluded:

(F)or every 2000 women invited for screening throughout 10 years, one will have her life prolonged. In addition, 10 healthy women, who would not have been diagnosed if there had not been screening, will be diagnosed as breast cancer patients and will be treated unnecessarily. It is thus not clear whether screening does more good than harm.

In a recent issue of the New England Journal of Medicine, Dr. Archie Bleyer and Dr. Gilbert Welch summarized the latest analyses as follows:

Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer.

And this is the key to meaningful breast cancer screening — that we reduce the rate at which women have to be treated for late stage cancer.

When the data for women under 40 were studied (these are women who generally don’t get regular mammograms), Dr. Welch and Bleyer wrote:

There was a larger relative reduction in mortality among women who were not exposed to screening mammography than among those who were exposed. We are left to conclude, as others have, that the good news in breast cancer — decreasing mortality — must largely be the result of improved treatment, not screening.

Dr. Susan Love, a long time clinician and researcher, would like to see less emphasis on screening and more focus on cancer prevention and treatment for the most aggressive cancers. (Roughly 15 percent to 20 percent of breast cancers are deadly.)

“There are still 40,000 women dying every year,” Dr. Love notes. “Even with screening, the bad cancers are still bad.”

As Donald Berry, a biostatistician at M.D. Anderson Cancer Center in Houston, has pointed out:

Most breast cancers are not lethal, however found. Screening mammograms preferentially find cancers that are slowly growing, and those are the ones that are seldom deadly. Getting something noxious out of the body as soon as possible leads women to think screening saved their lives. That is most unlikely.

The challenge now is to make more widespread the use of techniques that help clinicians identify biological markers that will distinguish between the lethal and benign types of tumors. This appears to be the next big advance in reducing mortality from breast cancer.

Mammography, like other detection tools, is imperfect (it misses about 20 percent of lumps due to dense breasts and other factors). Some would consider it a very weak detection tool, and given the harms of overtreatment (for example, unnecessary chemotherapy and radiation treatments), it is not surprising that some women will want to forego screening mammography.

Women need to carefully consider these factors and decide for themselves what would be best, although friends, caregivers, and even commercial interests may tell them that having routine mammograms is the only rational choice. What really helps is knowledgeable and supportive counseling.

This article was originally posted at Cognoscenti, WBUR Boston’s ideas and opinions section, and is re-posted with permission.

Although the Women’s Health Initiative trials, which studied different aspects of postmenopausal women’s health, began in 1991, the real game-changing results from the trials happened 10 years ago, in 2002, when the trial of estrogen plus progestin hormone therapy was stopped early. The trial was stopped because those responsible for monitoring trial safety found an increased risk of breast cancer, along with risks for heart attacks, strokes and blood clots to the lungs and legs.

This was major news at the time, because many, many women had been prescribed this combination hormone therapy under the assumption that it might actually protect them from heart disease, cancer, and stroke.

Today, both consumer advocate organizations like the National Women’s Health Network and the federal U.S. Preventive Services Task Force seem to agree that hormone therapy should not be used for the prevention of these diseases.

Earlier this month, in honor of the 10 year anniversary of the halting of the trials, the National Women’s Health Network hosted a blog carnival about hormone therapy. Among the posts:

• Dr. Sharima Rasanayagam of the Breast Cancer Fund writes about hormone therapy, chemical exposures, and breast cancer risk. (full post here)
• Karuna Jaggar of Breast Cancer Action on the importance of independently funded research, including the WHI (full post here)
• Cindy Pearson, Executive Director of the National Women’s Health Network, on the importance of the WHI and the need for ongoing research and “protections against misleading promotion of unproven and unsafe drugs.”
• Amy Allina, also of NWHN, writes about “challenging unproven medicine and saving lives.”
• Also, an interview with Dr. Vivian Pinn, former Director of the NIH’s Office of Research on Women’s Health, NIH, on the importance and impact of the WHI trials.

You can find these and other posts on NWHN’s blog.

The NWHN is also collecting stories from women took or were offered hormone therapy before the WHI; who refused it because of the study’s findings; were involved in the study as researchers or participants; and other health care providers, advocates, and individuals affected by the WHI.

This month, the U.S. Preventive Services Task Force released a new report which is informing their updated recommendations on hormone therapy for chronic disease prevention in menopausal women. Bone fractures, dementia, stroke, and urinary incontinence were among the chronic conditions they examined.

In the 2005 recommendations, USPSTF recommended against routine use of combined estrogen and progestin for the prevention of chronic conditions in postmenopausal women, and against estrogen alone for the prevention of chronic conditions in postmenopausal women who have had a hysterectomy. The new research looked at 9 newer studies – mostly from the Women’s Health Initiative – in order to review and update those recommendations.

Based on their review of the evidence, the authors concluded that both regimens – estrogen plus progestin, and estrogen alone – decrease risk of bone fracture but increase risk for stroke, thromboembolic events (blood clots in the legs or lungs), gallbladder disease, and urinary incontinence. Estrogen plus progestin was found to increase risk for breast cancer and probably dementia, while estrogen alone may slightly decrease risk for breast cancer.

The draft new recommendations are very similar to the 2005 ones. The USPSTF “concludes with high certainty that there is zero to negative net benefit for the use of combined estrogen and progestin therapy for the prevention of chronic conditions, and concludes with moderate certainty that there is no net benefit for the use of estrogen alone.” They also explain that the recommendations do not apply to women younger than age 50 who have undergone surgical menopause, and they don’t address use of hormone therapy for the management of menopausal symptoms like hot flashes or vaginal dryness.

There were some limitations of this research described by the authors, like the small number of new studies, variations in the studies that make it hard to combine their findings, and lots of study participants who dropped out before the trials were finished. In addition, most of the women in the studies were 60 to 69 years old. Additional research is needed that looks at women who are transitioning through menopause or immediately postmenopausal.

A Washington Post article puts the findings in context, explaining:

One form of hormone replacement therapy — estrogen alone — did appear to slightly reduce the incidence of breast cancer. Invasive breast cancer looms large as a concern to many women, but affects just 11 percent of them past menopause.

That possible protective effect became less consequential when weighed against hormone therapy’s impact on far more likely risks to women’s health…It fails to reduce the risk of heart disease, which will affect 30 percent of women who live past menopause. It slightly increased the likelihood of dementia, which will affect 22 percent of all post-menopausal women. It was linked to a higher likelihood of stroke, affecting 21 percent of these women.

Last week, Breast Cancer Action hosted a webinar, Inequities in Breast Cancer: Race and Place Matter, presented by Sahru Keiser of BCA and Irene Yen of UCSF. They discussed disparities in deaths and especially survival 5 years past diagnosis among Black, Latina, Asian and Pacific Islander, Native Hawaiian, and Native American and Alaska Native women. For example, Keiser noted that Latinas are 20% more likely to die than white women, even when diagnosed at a similar age and cancer stage.

The presenters also discussed how these disparities persist even if the women have equal access to health care. One factor they considered was exposure to toxic chemicals at work at home, for which there are also disparities between races/ethnicities, and access to neighborhoods and communities that promote physical activity, which reduces cancer risk. The presenters wanted participants to understand the role of place in disparities as well as the role of race, and to consider how communities could plan places in a way that reduces those disparities.

If you’d like to view the recording of the webinar, it’s now online.

Earlier this month, the National Women’s Health Network received the Grassroots Activism Award from the National Breast Cancer Coalition for its years of work challenging the wisdom of widespread use of menopausal hormone replacement therapy, especially estrogen/progestin therapy known to raise women’s risk of breast cancer.

NWHN Director Cindy Pearson, in response to the award, reminds us of how widespread HRT was in the recent past, and how little was really known at that time about the potential harms of the therapy:

You remember what she was talking about: until just about 10 years ago, it was routine practice to prescribe hormone therapy to women during menopause. This was justified by claims that it would keep us young and healthy, despite the lack of evidence supporting those claims and despite evidence suggesting that hormone therapy might increase the risk of breast cancer. But the Network knew that what the medical establishment believed had not been proven by science. And we wouldn’t stop saying that – even when the response was rolled eyes and smug looks.

Kudos to the NWHN for their persistence, getting the message out to women who needed it, and this much-deserved recognition.

Breast Cancer Action is offering a free, one-hour webinar examining the racial and socio-economic factors that influence the health of individuals and communities.

Titled “Inequities in Breast Cancer: Race and Place Matter,” the webinar will take place Tuesday, May 15, at 2 p.m. PDT/5 p.m. EST (register here) and again on Wednesday, May 16, at 11 a.m. PDT/2 p.m. EST (register here).

“Inequities in breast cancer risk and outcomes vary among different racial and ethnic communities and are well documented,” writes Sahru Keiser, BCA program associate of education and mobilization. “In our efforts to address and end this disease, health activists, practitioners, and legislators must focus on the social and economic context in which the disease arises.”

Keiser is presenting the webinar with Irene Yen, associate professor of medicine and associate director of the Experiential Learning, Health & Society Pathway at University of California, San Francisco. Among the questions they’ll address:

Why are white women more likely to develop breast cancer, yet African American, Latina and Samoan women are more likely to die from the disease? Why do women of color tend to develop more aggressive breast cancers at earlier ages than white women? Why are we seeing the sharpest rise in breast cancer rates in Japanese women in Los Angeles?

Topics covered will include:

• How where we live, work and play defines our access to good health

• Breast cancer inequities in under-served communities

• How breast cancer research acknowledges race

• Inequities in breast cancer clinical trials

• How you can work for health equity

Learn more at Breast Cancer Action about environmental links to breast cancer and the importance of social justice. And visit BCA’s Think Before You Pink project, which raises awareness about conflicts of interest in pink-ribbon marketing — like KFC’s Buckets for the Cure campaign that promoted fast food restaurants in low-income neighborhoods.

One of the current campaigns takes on Eli Lilly, the only company in the world making and distributing rBGH, an artificial growth hormone found in many dairy products that is linked to increased risk of breast cancer. BCA is working to remove rBGH from the food supply completely. Free Think Before You Pink toolkits featuring resources and information are available here.

The American Civil Liberties Union has launched the “Take Back Our Genes” campaign to fight against issuing patents issued human genes. The ACLU believes that allowing one company to own the patent for a particular gene limits research on genetic health conditions and also limits patient options for genetic testing.

As the organization explains:

Myriad Genetics, which controls the patents on the genes, is able to exclude others from testing and conducting research on the patented genes. Patients who want to obtain genetic testing to determine whether they are at risk for hereditary breast and ovarian cancer have only one option for full genetic sequencing: Myriad Genetics. Myriad decides what tests are offered, which mutations are included, at what cost, and what research can be conducted without fear of patent infringement liability.

The ACLU is asking individuals to send their photos or videos explaining their opposition to gene patenting. The video below provides a great example of how gene patenting can affect patients and their access to affordable, reliable testing.

Our Bodies Ourselves is one plaintiff in the lawsuit filed by the ACLU and the Public Patent Foundation against the U.S. Patent and Trademark Office, Myriad Genetics, and the University of Utah Research Foundation to challenge the patents they hold on BRCA1 and BRCA2 genes.

See our previous posts on this topic:
OBOS Joins ACLU Lawsuit Challenging Breast and Ovarian Cancer Gene Patents
Breast Cancer Gene Patents Invalidated (see later update from the appeals court)

These two recent pieces also provide good explanation of why gene patents are an important issue for patients and researchers to consider.

On Monday night, OBOS Executive Director Judy Norsigian discussed the politicization of women’s health on Al Jazeera with Hadley Heath, a senior policy analyst with the Independent Women’s Forum, and Tara McGuinness, senior vice president for communications at the Center for American Progress.

“Inside Story” host Shihab Rattansi was well prepared for what turned into a very interesting discussion. The questions on the table included: Is women’s health being damaged by politics in the U.S.? Has the controversy over funding to Planned Parenthood for breast cancer screening underlined the extent to which conservative groups now influence women’s health access?

On the subject of Komen backpedaling on its controversial decision to stop making grants to Planned Parenthood, Nosigian said: “What we see here is a conservatizing trend in this country that I think has emboldened many … I saw the reversal of the decision simply as damage control. I do not think there has been a profound change in perspective at all.”

McGuinness made this valuable point: “This was an effort to politicize what is not a political thing … I think when it comes to women’s health, there aren’t two sides to this issue.”

Even though Komen executive Karen Handel, who drove the decision to cut off funding to Planned Parenthood, resigned this morning, the controversy is far from being closed.

Watch the discussion below.

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.

The fallout over the decision by Susan G. Komen for the Cure to stop giving grants to Planned Parenthood affiliates reflects a growing anger across the country over the intrusion of political ideology in matters concerning women’s health.

It’s fair to say the well-funded foundation had not thought through, or vastly underestimated, the criticism it would receive for making a thinly veiled political decision to cut off funding for breast-screening exams for low-income women. And based on the level of disapproval it’s facing, it may be sometime before Komen can recover.

In the meantime, its decision may well be remembered for activating people who, up until now, may not have given much thought to the right-wing influence on women’s health care.

It’s surprisingly easy for people to separate politics from their own lives. While they might believe certain political decisions are not very smart, they are unlikely to speak up if it does not affect them. But the breast cancer community, comprised of women recently diagnosed, survivors, family members and advocates of more research funding, has long been portrayed as one big family — largely by Komen, which sponsors the very popular and very pink fundraising walks.

For Komen to cut out some of that family — because of pressure from anti-abortion activists who refuse to acknowledge Planned Parenthood’s delivery of vital health care services — simply strikes too close to home.

Deana Rohlinger, an associate professor at Florida State University who studies women’s groups, said on NPR’s “All Things Considered” this week, “It’s not a secret by any stretch of the imagination that Planned Parenthood does abortion. That’s not brand new information. But for some people, that Komen is getting politically involved is.”

The truth is that Komen has been politically involved for some time. OBOS Executive Director Judy Norsigian, in an interview on “Morning Edition,” noted that Komen’s founder and CEO Nancy Brinker has been a longtime Republican supporter and fundraiser, “and on many occasions has supported policies that most supporters of Komen probably wouldn’t approve of.” Some of those policies are outlined in this posting at Daily Kos.

But it took pulling money for breast cancer screening from one of the most popular organizations serving women of all backgrounds to blow open Komen’s politics.

According to news reports, Komen’s president, Elizabeth Thompson, told Cecile Richards, president of the Planned Parenthood Federation of America, in a phone call in December that it would not be renewing its grants. The funding totaled around $680,000 in 2011 and $580,000 in 2010 for breast-cancer screening and other breast-health services offered at 19 Planned Parenthood affiliates.

The reason given was that the charity had adopted new rules barring grants to organizations under investigation by local, state or federal authorities, and Planned Parenthood was under House investigation. It is, of course, very easy to open an investigation without merit. In this case, Republican Rep. Cliff Stearns of Florida launched an inquiry last fall to determine whether Planned Parenthood spent public money on abortions, which is prohibited by federal law. The inquiry was seen as a far-reaching political ploy to discredit the organization, after Republicans failed to cut off Planned Parenthood funding.

Reps. Henry Waxman and Diana DeGette, both Democrats, sent a letter to Stearns questioning the basis for the investigation, noting in part that federal audits “have not identified any pattern of misuse of federal funds, illegal activity, or other abuse that would justify a broad and invasive congressional investigation.”

It struck some as no coincidence that Komen had recently hired a new senior vice-president for public policy, Karen Handel. During her failed run for governor of Georgia in 2010, Handel described herself as “staunchly and unequivocally pro-life” and pledged to eliminate grant funding for breast and cervical cancer screening at Planned Parenthood.

The Atlantic’s Jeffrey Goldberg reports that the no-investigations rule was, according to “three sources with direct knowledge of the Komen decision-making process,” created specifically as an excuse to dump Planned Parenthood, and that decision was driven by Handel. A former employee talked on the record about the resignation of Mollie Williams, Komen’s top public health official, who left the organization in protest:

John Hammarley, who until recently served as Komen’s senior communications adviser and who was charged with managing the public relations aspects of Komen’s Planned Parenthood grant, said that Williams believed she could not honorably serve in her position once Komen had caved to pressure from the anti-abortion right. “Mollie is one of the most highly respected and ethical people inside the organization, and she felt she couldn’t continue under these conditions,” Hammarley said. “The Komen board of directors are very politically savvy folks, and I think over time they thought if they gave in to the very aggressive propaganda machine of the anti-abortion groups, that the issue would go away. It seemed very short-sighted to me.”

Lessons on Media Strategy

From a PR perspective, it’s been a disaster for Komen. Previously, the foundation has had to deal with a small number of anti-abortion activists who dismiss all of Planned Parenthood’s vital healthcare services (pdf) out of hand because a small percentage of its work is abortion-related (3 percent of services in 2010 — cancer screening and prevention accounted for 14.5 percent) and who don’t understand how grants work. Some of them erronesously believe abortion raises a woman’s risk of breast cancer, though numerous studies and the National Cancer Institute have affirmed it does not.

Now Komen must confront the wrath of its own supporters, many of whom have raised thousands of dollars for Komen over the years and won’t stand for political shenanigans. Based on interviews and comments left on Komen’s discussion forum and elsewhere online, many of those women who have developed strong ties with the breast cancer community are looking to send their money elsewhere.

Kivi Leroux Miller, a nonprofit communications strategist, told Politico that Komen “pretty much cut their fundraising support in half.”

“I don’t think they meant to make a huge political statement, but it was extremely naïve of them to think this wasn’t hyper-political,” Miller continued. “They have dove head first into the abortion debate — in fact, they fell into the pool — and whoever is doing their communications doesn’t know how to swim.”

Miller has more media analysis on her site in a post titled “The Accidental Rebranding of Komen for the Cure.” Social media consultant Beth Kanter has written a good summary of online responses, “Komen Kan Kiss My Mammagram, PinActivism, and Newsjacking for a Cause.” Kanter also set up a Pininterest board, “Komen Kan Kiss My Mammogram,” named after Allison Fine’s fundraising campaign for Planned Parenthood. Kanter invited other women to contribute, and the result is fabulous collage of pro-Planned Parenthood posters, videos and news.

In another brilliant stroke of online activism, media technologist Deanna Zandt yesterday launched a Tumblr site for people to submit stories about how Planned Parenthood literally saved or changed their lives by providing birth control and affordable preventive health care. Here’s one of the many stories you’ll see:

I had gone back to school in my late 20s and was temporarily uninsured. I went to Planned Parenthood in Manhattan for my yearly checkup and contraceptives. They detected abnormal cervical cells that were precancerous, and soon afterward they performed cryosurgery to remove the cells. The fee was something this temporarily poor college student could afford. I remained loyal to PP for my annual checkup. Several years later, they found a breast lump and guided me to further screening (by then, I was insured again). I was fortunate that it turned out to be nothing, but my knowledge that PP would be there for me no matter what put my mind at ease during that week between tests.

Planned Parenthood has benefited greatly, in funding as well as good will. It received nearly $400,000 in donations in the first 24 hours after the Komen news broke. New York City Mayor Michael Bloomberg announced Thursday he would personally give Planned Parenthood a $250,000 matching gift, donating $1 for ever new dollar Planned Parenthood raises up to $250,000. For more donation and activism opportunities, Katha Pollitt has a nice round-up at the end of her wonderfully titled column, “The Komen Foundation Pinkwashes Anti-choicers, Punks Planned Parenthood.”

Critiques Against Komen Go Beyond Political Bias

Komen seemed to completely misjudge the extent of the fallout, refusing to make spokespeople available Tuesday and failing to respond quickly on Facebook or Twitter. Brinker, Komen’s founder, finally appeared in a video posted to YouTube late Wednesday, terming the criticisms a “dangerous distraction.” She said the decision resulted from a review of grants and standards and pledged that the changes in grantmaking would enable Komen to ultimately help more women. Brinker also said Komen would “never turn our backs on women who need us the most.”

That remains debatable. While the public outcry stems from learning that Komen currently is not acting in the best interest of women’s health, its critics have long questioned whether the enormous amount of money Komen raises is put to good use. For instance, Komen only recently decided to start looking at the environmental causes of breast cancer — something groups like Breast Cancer Action and Silent Spring Institute have long advocated for.

In recent years, there’s been growing criticism of Komen’s ties to companies that don pink ribbons each year while developing products that contain carcinogens and increase cancer risks. (Remember the mocked “Buckets for the Cure” hookup with Kentucky Fried Chicken?) This practice, known as pinkwashing, sparked BCA’s Think Before Your Pink campaign. As Barbara Brenner, former BCA director, told NPR in 2010: “If shopping could cure breast cancer, it would be cured by now.”

In addition, Komen’s screening guidelines are at odds with recommendations put forth in 2009 by the U.S. Preventive Services Taskforce — guidelines that OBOS explained in detail back then and fully supports. Komen’s promotion of certain drugs used to treat breast cancer has also come under scrutiny.

“In the past, they’ve let women down by insisting that the FDA should continue to approve Avastin as an effective treatment for breast cancer when new evidence sadly showed, that it’s not,” Cindy Pearson, executive director of the National Women’s Health Network, said on NPR’s “Morning Edition.” “They’ve also insisted that screening for breast cancer start at a young age and be very frequent when evidence shows it’s not that much of a slam dunk anymore.”

Writing in The Atlantic, Linda Hirshman raises another question:

In a ghastly coincidence, the same day Komen pulled the money from Planned Parenthood because Stearns thought they were spending federal funds on abortions, the Journal of the America Medical Association published a damning study that almost half of women receiving second surgeries after lumpectomies didn’t need the procedure. Painful, disfiguring, unnecessary surgery. At least three of the four sites studied in the JAMA report — the University of Vermont, Kaiser Permanente Colorado, and the Marshfield Clinic — has a relationship with the Komen Foundation. Kaiser Permanente is a “corporate campaign partner,” the University of Vermont received a research grant, the Central Wisconsin Komen affiliate sponsors programs at the Marshfield Clinic. Maybe Komen should concentrate their granting criteria on whether the recipients are actually helping cancer patients.

But for now, the spotlight is on Komen’s politics.

The AP’s David Crary spoke with Patrick Hurd, CEO of Planned Parenthood of Southeastern Virginia, a recipient of a 2010 grant from Komen. His wife, Betsi, has participated in several Komen for the Cure fundraising races and is currently battling breast cancer.

“We’re kind of reeling,” Hurd said. “It sounds almost trite, going through this with Betsi, but cancer doesn’t care if you’re pro-choice, anti-choice, progressive, conservative,” Hurd said. “Victims of cancer could care less about people’s politics.”

Unless those holding the purse strings play politics with cancer.