From the Executive Director: A Deep Sense of Urgency

By Karuna Jaggar, Executive Director

My feet are sore, but my heart is strong. Like many of you, I’ve been protesting a range of issues—three protests in six days. Here’s what I’ve been drawing inspiration from. Civil rights leader and Congressperson John Lewis recently wrote:

“Our struggle is not the struggle of a day, a week, a month or a year, it is the struggle of a lifetime. Never, ever be afraid to make some noise and get in good trouble, necessary trouble.”

Breast Cancer Action has never been afraid to get into good and necessary trouble. We speak up, we speak out, even when it’s unpopular. We are an ambitious organization that feels a deep sense of urgency—because we know first-hand what is at stake.

We know the stomach-churning fear that comes with a breast cancer diagnosis. We know the physical and financial costs of treatment. We know the terror that treatment will not work and that the cancer will return or spread. We know what it means to say goodbye to loved ones.

This work is personal. And incredibly urgent.

As part of the incredible team here at Breast Cancer Action, doing this work day in and day out, I have to balance the impatience that comes from this urgency with a persistence grounded in the reality that change takes time. A fact that is especially true for some of the biggest and most impactful changes. This issue of The Source includes some examples of important changes that were many years in the making, and the result of many people’s determination and work.

There is no better example than the landmark U.S. Supreme Court win, litigated by the ACLU, to overturn Myriad Genetics’ patent on the human BRCA1 and BRCA2 genes. On June 13, we celebrated the 5th anniversary of this win with a free webinar for our members, featuring two women who propelled this historic case to victory! Barbara Brenner, Breast Cancer Action’s first executive director, who led this organization for fifteen years and built it into a national watchdog, signed the organization onto the case as a plaintiff back in 2009. Even before the case began winding its way through the courts, a process that lasted five years, our founders objected to corporate control of the human BRCA genes during the mid-1990s. And even after the Supreme Court win, there’s been more work to do. We’ve worked on issues related to genetic testing, including supporting efforts to free the data, monitoring threatening legislation that could reverse the ruling, supporting the ACLU’s filing to enforce patients’ rights to their data under HIPAA, pushing for strong Food and Drug Administration (FDA) regulation of genetic tests and opposing direct to consumer genetic testing.

This June was also a marker of significant progress in treatment thanks to a study that showed fewer women need chemotherapy after surgery for breast cancer. Although it may feel counterintuitive to see that a step forward would come in the form of actually pulling back on treatment, the truth is that reducing overtreatment has been an important focus of breast cancer activism—going all the way back to the radical Hallstead mastectomy. The ability to spare tens of thousands of women each year from the harmful effects of chemotherapy that’s not benefiting them is a major medical advance. And at the same time, it doesn’t overshadow the need for more effective treatments so fewer women die from the disease. We’ll continue to work for more effective, less toxic treatments for metastatic breast cancer.

We’ve also faced setbacks over the past few months. At the end of May, President Trump signed into law the federal Right to Try bill that we, along with patient watchdog groups, had spent the last year trying to stop. Now that the worse version of the bill (the Senate version) is law, we have an important role to play in helping people who want to access experimental drugs outside of the clinical trial process understand their choices, helping them understand the FDA’s existing compassionate use pathway and the important protections that are lost when patients go directly to drug companies as permitted by Right to Try.

This issue of The Source contains more information about these treatment related issues, as well as information about our work to prevent toxic exposures by working to end fracking and dangerous drilling in California. As Governor Jerry Brown enters his final months in office we, as part of the leadership group of a broad coalition of more than 800 national organizations, are demanding he take bold action to protect our public health and our planet. It’s urgent that we stop cancer before it starts, and it’s #BrownsLastChance to prevent cancer and climate change before he leaves office. No matter where you live in the U.S., look for opportunities to help build the pressure in the coming months.

The stakes are high. There’s so much that needs to change right now to address and end the breast cancer epidemic. As we face the overwhelming number of threats to women’s lives and bodies, I draw strength from Breast Cancer Action’s track record of unlikely wins against great odds. Wins you have helped make possible.

There’s no doubt that there’s work to do. Work that matters for the millions of people who are living with and at risk of breast cancer. Work that can’t be separated from the larger push for social justice. Work that makes sure women’s health never gets sidelined.

And I can assure you, we will not rest until lives and communities aren’t threatened by breast cancer. We will resist. We will persist! Thank you for joining us in the #CancerResistance.

This entry was posted in Articles, BCA News, E-Alerts.

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