By Karuna Jaggar, Executive Director

Angelina Jolie’s op-ed in the New York Times was big news this morning. Jolie shared her family history of cancer, her own genetic mutation, and her choice to have prophylactic surgery– agonizing decisions faced by other high risk women.

But this is a bigger, more sinister story than one of a celebrity’s personal medical decision. Jolie insists that all high risk women need access to “gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live” and notes that the $3,000+ test is out of reach for too many women. What she does not talk about is why the cost of the test is out of reach for many women.

Myriad Genetics holds patents on the human BRCA1 & 2 genes and therefore is the only company that offers the BRCA test.  Other companies say they could provide a better test for a few hundred dollars but this monopoly gives Myriad control over research, testing, diagnostics and development of treatments related to the BRCA genes.

In 2009, Breast Cancer Action joined researchers, genetic counselors and cancer patients in a lawsuit to overturn Myriad Genetics’ patent on the so-called “breast cancer genes.” The case is currently before the U.S. Supreme Court and we expect a ruling this summer.

In describing her surgery, Jolie is focused on reassuring high risk women who might be considering a prophylactic mastectomy that the surgery is manageable and perhaps not as bad as they might fear. She discusses how small the scars are. She talks about “beautiful” results. She insists just “days after surgery you can be back to a normal life.”

In explaining why she is happy with her own choice, Jolie does not explore the many and varied side effects and risks of the surgery she chose. Surgery always comes with risks and disclosures. In addition, breast implants are considered “high risk” devices by the FDA. Four out of ten women who have had a mastectomy will need additional surgery within three years of getting implants.

The effects of surgical oopherectomy (removal of ovaries) on pre-menopausal women are even more serious. These women are thrown into immediate menopause and the subsequent effects which range from the discomfort of hot flashes to increased risk of cardiovascular disease, osteoporosis, and other negative health consequences.

None of this is to pass judgment on or criticize Jolie’s own medical decision but rather to highlight the importance of a balanced discussion, one that includes consideration of the full range of risks and side effects. Jolie shares her own story with the world. She does not—nor should she—provide balanced medical counsel. However happy Jolie feels with her decision, too many women struggle with what they feel are all around bad choices. The call for better options comes both from women at high risk of breast cancer and from women who have already been diagnosed with breast cancer.

The increased risk of breast and ovarian cancer associated with BRCA mutations cloaks an important observation. Not every woman with a mutation will develop cancer in the course of her life. As we grapple with a breast cancer epidemic in this country, we need more research into the mechanisms of breast cancer and true prevention. After 30 years of breast cancer awareness, we are in a perverse situation where the average woman vastly overestimates her individual risk of breast cancer. Most women with breast cancer do not have an inherited genetic mutation. For those who do, there is no question that access to the genetic test and accompanying genetic counseling, free of corporate influence, provides potentially life-saving information. Whether high risk or average risk, all women need access to quality information free of corporate influence and appropriate health care based on their individual choices.

Behind Jolie’s publicity grabbing personal story, is the fact that one corporation owns the BRCA1&2 genes. I invite Jolie to join Breast Cancer Action in our work to outlaw human gene patents, to call for more research into mechanisms of breast cancer, to demand access to information and health care, and to ensure that every woman can make her own health decision after weighing risks and benefits according to her own individual values and priorities.
 

Barbara Brenner, 1951-2013

Even after ALS had silenced her vocal chords, Barbara Brenner’s powerful voice continued to send tremors into the medical establishment.

With the assistance of a text-to-speech computer program, Brenner, the former executive director of Breast Cancer Action, sent stinging missives to the head of the ALS clinical trials program and Food and Drug Administration officials, and continued her less public work of advising others dealing with ALS and breast cancer.

Brenner died from complications of ALS (amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to death) on May 10, 2013 at age 61 at the home she shared with her partner of 38 years, Suzanne Lampert, in San Francisco.

Brenner was 41 when she was first diagnosed with breast cancer. Her diagnosis led the lawyer and activist to join the board of Breast Cancer Action (BCA), a grassroots advocacy organization in San Francisco started by women with breast cancer. A year later, she became the organization’s first full-time executive director.

Under Brenner’s leadership, BCA grew into a national organization, and one that changed the conversation in breast cancer advocacy from building awareness to demanding research on causes and prevention.

BCA became the first breast cancer organization to refuse funding from any corporation that profits from cancer or contributes to cancer by polluting the environment. It was such a surprising policy that it was written up in the Journal of the National Cancer Institute.

The policy also unleashed the organization’s ability to take on daunting targets, such as big pharmaceutical companies, and groups once seen as untouchable, including the Susan G. Komen Foundation, that collaborate with corporations that endanger women’s health.

These were difficult decisions for the BCA board and membership. Brenner worked hard to explain the policy: “In our health care system, which is driven primarily by private profit, most of which goes to corporations, public messages about breast cancer tend to serve profits, not people,” she wrote in The Source, the BCA newsletter.

“If you follow the money, you can pretty much tell what positions people and organizations will take on breast cancer issues,” she wrote, citing the example of the fast track approval that the FDA gave to Genentech for its drug Avastin for use in treating breast cancer. BCA had opposed approval because the drug had deleterious side effects and there was no evidence that it extended the life of breast cancer patients. Cancer organizations that received funding from Genentech were silent. Three years later, the FDA withdrew its approval.

One of the most successful – and controversial – of the BCA campaigns was “Think Before You Pink,” launched in 2002, exposing how pink ribbon marketing did not help fund prevention or find a cure for breast cancer. BCA coined the term “pinkwashing,” exposing the hypocrisy of companies that used the pink ribbon to boost sales but covered up their own record of selling cosmetics, foods and other products that harmed women’s health. Brenner used to say, “If shopping could cure breast cancer, it would be cured by now.”

BCA targeted everything from pink buckets of Kentucky Fried Chicken and pink-lidded Yoplait yogurt to “Clean for the Cure” Eureka Vacuum Cleaners and pink Ford cars. Brenner’s sharp critique was highlighted in the 2012 film, “Pink Ribbons, Inc.” and even cited by Stephen Colbert.

Medical sociologist, Gayle Sulik, author of Pink Ribbon Blues said, “Barbara Brenner was powerful, at times obstreperous. She never seemed to be afraid to call things as she saw them, and it didn’t seem to matter who got upset about it. Barbara reminded us that sometimes it takes ruffling a few feathers to dislodge complacency.

“Who will push us to stretch our minds and abilities until we pave a new road in breast cancer? Who will remind us that if we are comfortable with the pink ribbon state of affairs, then we are part of the problem? It’s up to us now,” Sulik added.

Another controversial issue that Brenner took on was the over-promotion of mammograms. She wrote, “The dominant message about mammography is that it will save your life. That message is so oversimplified as to be dishonest. Mammograms can only be life- saving if they find a cancer that is treatable and if the woman gets treatment in a timely way – and one of the known causes of breast cancer is ionizing radiation, the kind you get from medical X-rays.” She warned that the science about the potential harm of over use of mammography was being discounted or ignored. Her position was recently confirmed by the FDA, which revised its recommendations concerning the frequency of screening mammograms for healthy women.

Cindy Pearson, executive director of the National Women’s Health Network, said, “Barbara made things happen in the world of breast cancer. She was responsible for changing the way women thought about breast cancer, and moved people from awareness to activism. Under her leadership Breast Cancer Action developed powerful campaigns that changed corporate behavior, clinical practice and research agendas.”

By the time Brenner stepped down in 2010, an earlier retirement than planned because of her ALS diagnosis, the organization had grown exponentially. “We started with a mailing list of 3500, “ she recalled, “half of which were bad.” By the end of her tenure, membership numbered 50,000. Brenner also used a wide variety of strategies including media, advising medical panels, and pressuring governmental agencies for research on prevention. But BCA never held a corporate- sponsored walk. Brenner noted, “You can walk to cure almost any disease now. I do wish that worked, but it doesn’t.”

A prolific writer of commentaries and op-eds, Brenner co-authored the chapter “Cancers” in the 2006 edition of Our Bodies, Ourselves and wrote the chapter “Sister Support: Women in the Breast Cancer Movement in Breast Cancer: Society Shapes an Epidemic (St. Martin’s Press, 2000). In the latter chapter, Brenner wrote: “Social change—both in the movement itself and in the scope and nature of the breast cancer epidemic—will come slowly. When that change does come, the result will be that all women with breast cancer will have clear choices for treatments that cure their disease without causing another one, and all people will live in a world where they are protected from the known causes of breast cancer. The road from here to there remains unmapped, but the breast cancer movement may yet pave the way.”

Judy Norsigian, executive director of Our Bodies, Ourselves, said that Brenner’s leadership among breast cancer activists and the wider women’s health movement is legendary. “So often it was her unique combination of guts, tenacity, brilliance and good humor that inspired the rest of us to keep our social justice goals front and center,” Norsigian said.

Known for her eloquence and wit, Brenner was a much sought after speaker and media commentator. She made complicated medical issues and environmental science understandable to grassroots activists and breast cancer support groups; at the same time she was unflinching with her critiques of hypocritical corporate policies at national professional meetings.

“We serve no purpose in being nice,” she told Ms. Magazine in 2005.

Author Anne Lamott, whom Brenner drew into BCA activism, said, “There are so few people telling the truth in the popular culture, There is nothing more nourishing or that makes us feel safer in the world than a person we can trust to tell us what is real and what is B.S.”

Brenner’s activism started early. Raised in Baltimore in a family of seven children, she remembers hearing Martin Luther King, Jr. when her mother took her to a civil rights march at age 10. At Smith College she was active in the anti-war movement, including shutting down the campus in 1970 as a protest against the war. At graduate school in Princeton, she came out as a lesbian in the early 70s, and the experience radicalized her. It was there that she met Lampert and they formed a bond that was to endure for four decades.

Together they moved to Los Angeles, Lampert’s hometown. Brenner started working with the women’s rights project of the ACLU of Southern California, where she realized how the law could be used to effect positive change. It led her to attend UC Berkeley Boalt Hall School of Law (now Berkeley Law School) and intern at the ACLU of Northern California in San Francisco.

After law school, she clerked for U.S. District Court Judge Thelton Henderson, a distinguished jurist who had been the first African-American to work for the Civil Rights Division of the U.S. Justice Department. She later became a partner at Remcho, Johansen & Purcell, a California law firm specializing in public policy and constitutional issues. Brenner also formed her own firm with Donna Hitchens, working primarily on civil rights and employment discrimination.

“Barb was a zealous, smart and compassionate advocate for her clients and was never intimidated by her opposition even when they were far more experienced and better financed. She was a wonderful law partner,” said Hitchens, now a retired judge of the San Francisco Superior Court.

As a lawyer, Brenner served on the affiliate and national boards of the ACLU, and volunteered as a cooperating attorney on civil liberties cases.

Dorothy Ehrlich, former director of the ACLU of Northern California, said, “Barbara and the ACLU have always been a perfect fit: she had that lawyers’ love of precision – getting the policy exactly right – and the activists’ passion about the issues of social justice. She is the most courageous advocate I have ever known.”

Brenner’s expertise on civil liberties and breast cancer advocacy were joined last month [in April] when the ACLU was before the U.S. Supreme Court challenging human gene patents, specifically those genes that indicate a predisposition for breast cancer.

Brenner immediately understood the effect this would have on the lives of millions of women and their families. Breast Cancer Action was the only breast cancer organization to stand up as a plaintiff in the case.
According to ACLU Executive Director Anthony Romero, “The possibilities for expanded scientific and medical research are tremendous, and Barbara’s bold leadership enabled the ACLU to be in this fight. When these patents are overturned by the Court, this will be yet another example of Barbara’s intrepid vision and strength.”

Though she was involved with health policy on a national level, Brenner always found time to provide compassionate advice to countless women who contacted her when they received a breast cancer diagnosis. Although debilitated with ALS, she became adept at using technology and social media to continue to consult with newly-diagnosed women and to share her expertise and experience about ALS as well.

On her blog, Healthy Barbs, she wrote both about her own daily struggles with ALS and about her anger over profit-driven health policies. She also used social media, including Facebook, to provide play-by-play accounts of her beloved San Francisco Giants.

Lampert described Brenner as “living with ALS instead of dying of ALS.” Until the last week of her life, she enjoyed going on “roll and strolls” in Golden Gate Park and other favorite places in SF; attending plays and concerts, and carrying on a lively e-mail correspondence with friends and relatives around the country.

Brenner was awarded numerous honors, including a Jefferson Award for Public Service in 2007. In 2012, Brenner was honored by her alma mater with the Smith College Medal and by the ACLU of Northern California with the Lola Hanzel Courageous Advocacy Award.

As her illness limited her physical mobility, Brenner delved into scholarly pursuits, including Jewish studies. She adopted the Hebrew name “Shefa” which means abundance. She had discovered a Jewish practice in which some people with life-threatening illnesses change their names to fool the angel of death, and, she said, “it sounds like a great idea to me.”

In addition to Lampert, Brenner is survived by her siblings Joseph S. Brenner, Mark A. Brenner, Nanci E. Grail (Donald Grail), Richard D. Brenner (Barbara), and Lawrence M. Brenner (Roderic Hooks), and eleven nieces and nephews, all of whom live in the greater Baltimore area. She is predeceased by her parents, Morton A. and Bettie B. Brenner, and her sister Ruth B. Newman.

At her request, contributions in lieu of flowers may be made to the Barbara Brenner Rapid Response Fund at Breast Cancer Action. 

The Barbara Brenner Rapid Response Fund (Barbara’s Fund) honors Barbara’s fifteen years of leadership as Breast Cancer Action’s (BCAction) first full-time Executive Director, as well as her commitment to women’s health and ending the breast cancer epidemic. Under Barbara’s leadership, BCAction became well-known for responding rapidly, accurately, truthfully and fearlessly to issues about breast cancer. New and crucial issues always arise in the breast cancer movement. Resources are needed in order to respond to them, educate the public, and motivate people to take action. Therefore, the dollars raised from Barbara’s Fund will support program activities that address crucial emerging issues in breast cancer.

The Barbara Brenner Rapid Response Fund is a temporarily restricted fund whereby only a certain percentage of the fund may be spent in a fiscal year, thereby ensuring the fund is sustained over time.

Click here to make your donation.

About Barbara Brenner

Barbara Brenner was new to the women’s health movement when she joined the board of Breast Cancer Action (BCA) in September 1994, a year after her first diagnosis with breast cancer. She became BCA’s first full-time Executive Director in 1995 when BCA was just five years old. Shortly after, she had a local recurrence of breast cancer, resulting in a mastectomy. Through her power to turn something deeply personal into a publicly accessible motivation for systemic change, she transformed the lives of women living with and at risk for developing breast cancer.

Barbara’s effectiveness as a tireless leader of the breast cancer movement is demonstrated not only in changes in the breast cancer world, but also in the growth and achievements of Breast Cancer Action during her tenure from 1995 – 2010. Her refusal to tolerate injustice compelled people to take action. Her commitment to tell the truth – always – about issues in breast cancer has led to positive change.

The energy and passion that Barbara has brought to the breast cancer movement will continue through the work of Breast Cancer Action and the fund established to honor the brand of activism that BCAction achieved under her leadership.

If you have questions about the Fund, please contact BCAction’s Development Director, Sarah Harding at sharding@bcaction.org or 415-243-9301 x17 or toll free at 877-2STOPBC.

“Cancer Breakthrough!” “New treatment Discovered!” “New Breast Cancer discovery!” “Cure!”

As media consumers, how can we separate the media hype from the real progress? How can we understand the relevance and importance of a news story, as well as determine whether a particular article is only telling half the story or lacks adequate evidence?

News reporting on health issues influences how we think about these critical issues and how we regard our own well-being and treatment options. Thinking critically while being bombarded with competing messages and staggering amounts of research data requires us to transform from being passive media consumers into critical thinkers.

Our goal in our next webinar is to develop your healthy skepticism about media coverage of health care news with a focus on breast cancer coverage. We’ll look at various claims made in the name of health care interventions and give you the tools to evaluate messages in the media.

Please join us on Wednesday, May 29th or Thursday, May 30th to have an informative conversation about coverage of breast cancer news in the media and tools to become more media literate.

Register for Wednesday May 29th 10am (PST)/1pm (EST)

Register for Thursday May 30th 2pm (PST)/5pm (EST)

Joining us on the webinar will be our friends, Gary Schwitzer, publisher of HealthNewsReview.org and Mandy Stahre, Epidemic Intelligence Service (EIS) Officer at the Centers for Disease Control and Prevention and reviewer for HealthNewsReview.org.

During the webinar we will cover:

•  The larger picture of media literacy
• What is right and wrong about health coverage in the media
• The current state of journalism and its impact on consumers 
• How industry and pharmaceuticals influence health news reporting
• How an issue is considered newsworthy
• The 10 criteria for medical stories with specific breast cancer focused examples 
• How to give reporters feedback
• How you can get involved

Join us on Wednesday, May 29th 10am (PST)/1pm (EST) or Thursday May 30th 2pm (PST)/5pm (EST) for this free webinar to develop your critical analysis of breast cancer news coverage and become more media literate.

Sandra Steingraber, author, cancer survivor, and environmental activist is currently serving a 15 day sentence at the Chemung County Jail in New York. Sandra was arrested last month while protesting a proposed natural gas storage and transportation facility that, if built, would bring chemical carcinogens, endocrine disruptors, and developmental toxicants to the area.

Yesterday afternoon, we received the following letter from Sandra Steingraber, writing from jail, addressed to fellow cancer survivors. It is a powerful call to action against fracking and we are honored to share the letter in its entirety. To read more about what Sandra was doing and why when she was arrested, click here.

Tuesday, April 23, 2013

As everyone knows, being booked into jail involves rites of passage: mug shots and fingerprints. What you may not know is that being fingerprinted no longer involves ink and paper. Like everything else, including the mug shot, this ritual has been digitized. The booking officer first rubs your fingers with a sequence of baby wipes and then splays them onto the glass plate of a scanner. Voilà! There they are, many times larger than life: facsimiles of your fingertips floating in the computer monitor. A series of happy electronic chirps means the pictures are keepers; a single beep means re-do (and out come the baby wipes again).

Meanwhile, you stare transfixed at your own disembodied black-and-white fingers, hailing you from behind the screen – their contours, whorls, and ridges, all familiar and alien at the same moment. And then it hits you: how exactly like looking at one’s own breasts on a mammogram! Only this time: you already know the length of your sentence; it’s far shorter than having cancer, and it doesn’t involve the possibility of death.
Here’s another difference – when the booking officer has to retake the image, he actually says F*CK, whereas the radiology technician – whose level of loving kindness roughly approximates Chemung County’s deputies – says things like, “The doctor wants another shot. Lean forward. Take a breath and hold it.” Which is less reassuring than F*CK.

I’m incarcerated in the Chemung County Jail for trespassing at a compressor station site on the banks of Seneca Lake, where the nation’s largest energy storage and transportation corporation seeks to store the vaporous products of fracking – methane, butane, propane – in abandoned salt mines under the lake. If Inergy, LLC has its way, my tranquil Finger Lakes home will be turned into the fracked gas storage and transportation hub of the entire Northeast. For my act of civil disobedience, which involved blockading this site with eleven other residents, I received a 15-day sentence.

As someone who grew up amid heavy industry – downwind from the Illinois River Valley’s biggest polluters – who was diagnosed with bladder cancer at 20, who documented, in my 30s, the presence of solvents and other carcinogens in my hometown drinking-water wells, who became a mother in my 40s, I highly value clean air and water and am motivated to protect them. I think a lot of cancer survivors feel that way. What I didn’t expect – as a first-time civil disobedient – was how well prepared I was for jail by my prior experience as a cancer patient. As far as I can see, if you’ve ever spent time in a hospital, tethered to a catheter tube, you have all the skills you need to cope with incarceration.

Hospital: Bad food; lights on all night; strip searches; people you’ve never met control your life; confined to a small space; little access to daylight; delayed response to call-button request; annoying television in the background; ice chips.

Jail: Ditto, minus the call button.

Basically, if you can be a cancer patient, you can be an inmate. Have you ever walked down a hospital corridor pushing an IV stand with one hand while trying to hold shut your backless, blue gown with the other? If so, you will have no trouble with ankle chains and an orange jumpsuit. Have you ever laid alone on an examination table with your feet in the stirrups, prepped and draped, waiting endlessly for the doctor to finish up with the previous patient and walk through the damned door? If so, then you will know how to occupy your mind while handcuffed to a wall while the officer finishes booking the inmate in the next room.

I say all this because there is a great need, at this historical moment, for citizens in general and cancer patients in specific to vigorously insert themselves into the political process. I’m not calling you to unlawful behavior. Civil disobedience is a highly personal decision and, for me, came as an individual act of conscience – but I do contend that there is more to fear from our inaction than from the consequences of our actions.

After two decades of researching, writing, speaking, and submitting expert testimony as a biologist on the role of chemical carcinogens, endocrine disruptors, and developmental toxicants in an attempt to bring about toxic chemical reform, I have to admit that very little has changed. Now I am watching the fracking boom – which uses and releases chemical carcinogens, endocrine disruptors, and developmental toxicants and enjoys exemptions from most of our federal environmental laws – undo what little progress we have made and hurtle us further down the road toward the catastrophe of climate change.

Here is what I am now convinced of: the oil, gas, and coal industries – and all the hydrocarbon carcinogens they produce and release – will not be dismantled by good data alone.

And here, from cell block D, are my recent observations: having been arrested three days prior to a cancer checkup, the latter, while deeply familiar, was far more frightening than the former. The images from my 2013 fingerprinting were far less terrifying than those from my 1995 colonoscopy. And lying motionless for 45 minutes in an MRI tube is a bigger ordeal than five days in 24-hour lockup. In a jail cell, you can reacquaint yourself with the bible, you can do pushups, you can think.
- Sandra Steingraber

Please also see the fully referenced December 12, 2011 Letter on Cancer Risks of Every Stage of the Fracking Process, signed by national and statewide cancer organizations.

It’s not too late to register for our next webinar: Fracking and Its Connection to Breast Cancer.

Breast Cancer Action is extremely concerned about fracking’s impact on public health, and so is a growing movement of individuals and organizations across the country. Please join us on Monday April 29th or Tuesday April 30th to have an informative conversation about fracking, its impacts on human health and what we need to do to protect public health and stop cancer before it starts.

Register for Monday April 29th 11am (PST)/2pm (EST)

Register for Tuesday April 30th 2pm (PST)/5pm (EST)

Breast Cancer Action’s own Annie Sartor, Policy and Campaigns Coordinator, will host this webinar joined by, Jennifer Krill, Executive Director of Earthworks and Karen Joy Miller, Environmental Chair, New York State Breast Cancer Network, member organization Huntington Breast Cancer Action Coalition, Inc.

During the webinar we will:

• Provide an overview of the fracking process and why it is harmful
• Explain how fracking introduces cancer risks into communities
• Clarify what we know about fracking and its connections to breast cancer
• Describe what a precautionary approach to fracking would look like
• Talk about how can you get involved on this pressing public health issue

Join us on Monday April 29th 11am (PST)/2pm (EST) or Tuesday April 30th 2pm (PST)/5pm (EST) for this free webinar to learn about the harms of fracking and how you can get involved in challenging this toxic industry.

Here’s what people are saying about our free educational webinars:

“Super informative.”

“Thanks so much for putting on this webinar. I found it very informative and useful!”

“Thanks for a very well done webinar. Well executed with a lot of good, inspiring information.”

I got ticket #1 to hear oral arguments at the Supreme Court.

By Karuna Jaggar, Executive Director

Yesterday, heady with hope and optimism at the impact our historic case could have on women’s health, the mood changed suddenly when we learned the terrible news from Boston as we were leaving the Supreme Court and wrapping up the rally. I write this recap of yesterday’s events at the Supreme Court with the deep sadness shared by so many. Yesterday marked a pivotal moment in this case that many of you have been anticipating for years.

Whether you stood with Breast Cancer Action outside the Supreme Court calling to outlaw human gene patents, cheered us from afar, or stretched your budget to make your biggest donation to support our work—you helped create this historic moment.

Let me give you a sense of the atmosphere. Lines to get in were long, I was the first of only 50 or so members of the public to get a seat inside the courtroom. The Courtroom itself was packed. Nobel prize winning scientists Eric Lander and James D. Watson, heads of NIH (Harold Varmus) and NCI (Francis Collins), prominent geneticists, and other researchers, scientists, and policy makers whose work will be deeply impacted by this case were all in the audience.

In a test of Myriad’s logic and how far they are willing to go in allowing for corporate control over our very bodies, Justice Kagen pushed Myriad lawyers to take their argument to the extreme extent asking whether human chromosomes are patentable. Myriad replied yes. This is absurd and their reply came close to prompting several gasps in the courtroom. Kagen may not have been aware that the very scientist who discovered the double helix structure of DNA, James D. Watson was himself in the courtroom and he later spoke out against the practice of human gene patents.

BCAction members at the Supreme Court taking a stand against the patenting of our genes during oral arguments.

I felt so proud to stand with our allies and friends and I was truly awed and humbled by the crowd of breast cancer activists supporting the issue outside. What an incredible experience! Well over 50 people from 14 states across the country joined together to stand against human gene patenting. Women proudly held up signs and pictures of loved ones: women with their children, their families, and friends. We were thrilled to stand with decades-long BCAction members as well as people who found BCAction only three weeks ago!

We were joined by partner organizations and allies who stand with us in opposition to Myriad’s BRCA gene patents and all human gene patents. Leaders from Friends of the Earth USA, Knowledge Ecology International, FORCE, and METAVivor, joined us and spoke powerfully about the harms that result from Myriad’s gene patent.

Standing shoulder to shoulder with so many wonderful people working hard for women’s health was inspiring, and hearing the personal stories from the powerful women was an ongoing reminder that so much is at stake here. We know that Myriad’s patent on our genes is wrong, and we are hopeful that the Supreme Court Justices will take this opportunity to come down on the right side of women’s health.

Years ago, Breast Cancer Action was the only breast cancer organization willing to take a stand to oppose the human “breast cancer gene” patents. We remain the only breast cancer organization that is a plaintiff on the case.

Thank you for your support and ensuring we are free from any corporate conflict of interest and can always take a bold stand for women’s health.

Stay tuned to Breast Cancer Action in the months to come as we look forward to the Court’s ruling. Your ongoing support got us to the US Supreme Court. But we have so much more to do. If you are inspired by how far we have come, and want to make sure Breast Cancer Action has the resources to always stand up to corporate giants like Myriad Genetics, make a generous donation today.

In sisterhood and solidarity,

Karuna

P.S. Make sure to read our report from the rally outside the Supreme Court during oral arguments. 

BCAction member Donna Kaufman representing women living with breast cancer who couldn’t be at the rally.

By Caitlin Carmody, Membership Coordinator and Annie Sartor, Policy and Campaigns Coordinator, reporting from Washington, D.C.

“A patent is a reward for invention not a reward for effort. Myriad didn’t invent anything.” (ACLU senior counsel Chris Hansen, today at the US Supreme Court).

Today the Supreme Court heard oral arguments in our landmark challenge to Myriad Genetics’ patents on the human “breast cancer” genes, BRCA1 and BRCA2. While our lawyers were inside making our case against corporate ownership of our bodies, we stood at the steps of the US Supreme Court along with activists from across the country, and rallied our hearts out on behalf of women’s health and against corporate control of our genes.

BCAction Executive Director Karuna Jaggar was one of only 15 members of the public who managed to get a seat inside the courtroom. Inside as out, the importance of this case was apparent. Seated around Karuna was a veritable “who’s who” of the biotech industry. Undoubtedly, the Myriad case has the power to significantly change much in the field of science and medicine.

It’s impossible to overstate the importance of this case. Karuna reported that inside the courtroom the energy was high, and our ACLU lawyers, led by senior counsel Chris Hansen, were on fire, relentlessly pushing this case with ever-increasing clarity closer and closer to a victory for women’s health: “Given the energy in the courtroom and the responses of the Justices, I am contemplating exactly what a favorable ruling will mean for women,” said Karuna.

Chris Hansen captured so simply the reason human gene patents are a bad idea and why Myriad’s patents on the BRCA genes must be overturned:  “All Myriad has done is take a part of the body out of the body. No different than taking the kidney out of the body. Just because you take the kidney out of the body doesn’t mean you get to patent it.”

We were proud of our friends inside the courtroom on this historic day. But we were awed and humbled by all the passionate women’s health advocates gathered outside. What an incredible sight!  

Breast Cancer Action has always insisted that change happens because we demand it and today, we witnessed change in the making. At the steps of the U.S. Supreme Court, on this rainy, Monday workday morning, about 50 people from 14 states across the country joined together to stand against human gene patenting. Meeting for the first time this morning, women who have helped build BCAction for decades, women who have undergone prophylactic surgery to remove their breasts and ovaries, women with metastatic breast cancer, women in the midst of treatment, recent college graduates, new members visiting DC with their daughters, all of them joined together and chanted, spoke out, and bore witness to this critical issue in women’s health.

Their stories and passionate accounts of why we continue to demand the changes we do reiterated a simple common belief: we do this work, we are here today because women’s lives are at stake.

Our combined words challenged the practice of ‘business of usual’, as we reminded all who listened that Myriad’s patents on the human BRCA genes impact all of us: these patents damage our health, limit access to an outdated and overpriced test, and prevent much-needed second opinions. Everyone we talked to at the rally shared compelling stories about why they believe human gene patenting is wrong and why the U.S. Supreme Court has to correct this wrong.

One of our chants was, “5 – 4, 4- 5: These Decisions Control Our Lives!” and it couldn’t be more true. Several women took the microphone and spoke powerfully to the rally crowd to talk about how Myriad’s monopoly on our genes had directly impacted them. These women’s moving stories are a strong testament to the future direction of women’s healthcare if we continue to put corporate profits before women’s health, and allow corporate control over our very DNA.  Speakers talked about themselves, their mothers, aunts, and daughters. People proudly held up signs and pictures of loved ones.

We were inspired throughout the event by representatives from partner organizations who supported us in our stand against Myriad’s gene patent. Representatives from FORCE, METAVivor, Friends of the Earth and Knowledge Ecology International joined us and took turns on the mic to talk about the real health harms that result from Myriad’s gene patent.  

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.

We’ll have more updates over the coming days—beginning with tonight’s reception in DC. So stay tuned to Breast Cancer Action in the months to come because we won’t stop until we see the necessary changes to finally address and end this breast cancer epidemic.

To see more pictures of the rally, check out the album on our Facebook page.

April 15, 2013

Contact: Angela Wall, Communications Manager (415) 243-9301 x16 awall@bcaction.org.

Breast Cancer Action Case Challenging Human Gene Patents: U.S. Supreme Court Hears Oral Arguments.

SAN FRANCISCO, CA—Oral arguments in the human gene patent lawsuit brought by Breast Cancer Action (BCAction) are today being heard by the Supreme Court. BCAction, the national watchdog of the breast cancer movement is a plaintiff in this landmark case challenging Myriad Genetics’ patents on the human BRCA1 and BRCA2 genes, known as the “breast cancer genes.” During the hearing, BCAction members from across the country and partner organizations are rallying outside the Court calling to outlaw human gene patents.

Myriad Genetics’ patents on the human BRCA1&2 genes are sweeping, and cover the gene sequences and all variations, mutations and rearrangements of these human genes. These patents allow Myriad to control—and in many cases block—all uses of the human “breast cancer genes,” including development of diagnostics, therapies, drug development involving either of the human BRCA1& 2 genes.

Information about common mutations on these genes can be potentially lifesaving for women who learn they have an increased risk of cancer. The test offered by Myriad is the only commercially available test in the U.S. and currently not enough women can get access to important information about their genes and cancer risk because the test is expensive (over $3,000), provides incomplete information on some mutations, and Myriad’s patent monopoly prohibits access to second opinions.

With this case, BCAction seeks to remove a barrier that harms women living with and at risk of breast cancer and to set a critical legal precedent: corporations cannot own human genes. Karuna Jaggar, Breast Cancer Action’s executive director said: “At a time when we desperately need new insights into cancer prevention, diagnosis, and treatment, the human BRCA1&2 patents block vital scientific research and medical care connected to breast and ovarian cancer.”

Jaggar stated: “It is ironic that on the cusp of a revolution in personalized medicine, in which doctors can customize treatment based on an individual’s genetic information, we see one company controlling access to the human ‘breast cancer genes.’”

Myriad Genetics’ patents mean that they are the gatekeeper for research involving the human BRCA genes: Myriad controls who can do what research involving these genes. “Myriad’s patents block doctors’ and researchers’ access to the human ‘breast cancer genes’ and harm women’s health,” said Jaggar. “Instead of leading to promissed breakthroughs in women’s health, the privatization of the human BRCA1&2 genes has created a critical barrier to addressing and ending the breast cancer epidemic.”

The lawsuit, filed by the American Civil Liberties Union and the Public Patent Foundation, challenges the legality of the U.S. Patent and Trademark Office’s practice of granting patents on human genes.

The case is Association for Molecular Pathology, et al. v. U.S. Patent and Trademark Office, et al.

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Breast Cancer Action (www.bcaction.org)—a national non-profit education and advocacy organization refuses to accept funding from pharmaceutical companies or any other organizations that profit from or contribute to the breast cancer epidemic.