Action, Not Awareness Breast Cancer Awareness Month National Breast Cancer Coalition Advocate Toolkit

Transcription

1 Action, Not Awareness National Breast Cancer Coalition Advocate Toolkit

2 2 INTRODUCTION Awareness of breast cancer is at an all-time high. Yet breast cancer still kills almost as many Americans each year as it did 25 years ago. We lost 43,583 women to breast cancer in 1991 in the U.S., and we will lose approximately 40,000 women and 400 men to breast cancer this year. Awareness isn t working. Only action will end breast cancer. This Breast Cancer Awareness Month, the National Breast Cancer Coalition will be talking about taking the actions needed to end breast cancer and end breast cancer awareness month. Included in this guide are ways you can help spread the message of Breast Cancer Deadline 2020, challenging policymakers, researchers, and other stakeholders to work toward the goal of knowing how to end breast cancer by January 1, Together, we can help change the conversation moving away from awareness and toward ending this disease. TABLE OF CONTENTS OUTREACH GUIDE 3 Ways to participate, including social media, using talking points at events, doing an interview, and writing a letter to the editor ACTION, NOT AWARENESS: ADVOCATE TALKING POINTS 5 Talking points on breast cancer statistics, Action, Not Awareness, Breast Cancer Deadline 2020, the Artemis Project, and NBCC INTERVIEWING Guides for speaking with the media, including suggested talking points MYTHS AND TRUTHS 9 Dispelling myths and telling the truth about breast cancer QUESTIONS? Ron Sallerson at rsallerson@breastcancerdeadline2020.org

3 3 OUTREACH GUIDE Ways to Spread the Breast Cancer Deadline 2020 Message During Breast Cancer Awareness Month 2016 Telling your breast cancer story and talking about the important work being done by the National Breast Cancer Coalition (NBCC) towards meeting Breast Cancer Deadline 2020 will help change the conversation around breast cancer we need action, not awareness. Post or Tweet on Your Social Media Platforms Many people get their news from Facebook or Twitter, so you can help your friends, family, and colleagues cut through the awareness clutter this month by posting Breast Cancer Deadline 2020 messages on your social media accounts. Please see the Social Media Guide below and on our website ( for sample posts and tweets to use and which dates to use them. Participate in the Discussion at a Breast Cancer Awareness Month Event When you attend a Breast Cancer Awareness Month event in your community, speak up. Whether in a group discussion or in one-on-one conversations with other survivors or people who care about ending breast cancer, your efforts to recruit others to support Deadline 2020 help us meet our goal. Please see the Action, Not Awareness: Advocate Talking Points document for the messages to share this month. Do an Interview with Local Media Your local newspapers and TV stations will be doing Breast Cancer Awareness Month stories throughout the month of October. Reaching out to tell your breast cancer story and to talk about Breast Cancer Deadline 2020 will help reporters better understand the issues and better report what s really needed this October action. Please see the Interviewing 101 guide, available on our website, for more information on securing and executing an interview with your local TV station or newspaper. Write a Letter to the Editor Writing a letter to the editor is a good way to spread information about Breast Cancer Deadline 2020 because your messages will be published in full not edited by a reporter as part of a larger story, for example. Note that letters to the editor need to be short. Newspapers typically have a 200 to 400 word limit. To check your newspaper s word limits, visit the Submit a letter to the editor page on their website. A sample letter with a 200 word count, using the Action, Not Awareness: Advocate Talking Points as a guide, is below. Subject: We Need Action, Not Awareness this October

4 4 Awareness of breast cancer is at an all-time high. Yet we haven t made much progress in stopping women from dying of it. We lost 43,583 women to breast cancer in 1991 in the U.S., and we will lose approximately 40,000 women and 400 men to breast cancer this year. This October, join me in taking action. Support Breast Cancer Deadline 2020, which challenges policymakers, researchers and other stakeholders to work toward the goal of knowing how to end breast cancer by January 1, Ending breast cancer is an urgent task and requires changing the conversation around breast cancer. We need to move away from awareness and toward preventing breast cancer from happening and preventing people from dying from it. The Artemis Project is the research component to Deadline 2020 an advocate-led, innovative, mission-driven approach focused on intensive work in two areas: (1) primary prevention, or how we stop people from getting breast cancer in the first place; and (2) preventing metastasis, or how we stop people from dying of breast cancer. Artemis participants are making progress toward developing a preventive breast cancer vaccine that s right, a vaccine. Learn how you can help at Name City, State Share your good work Did you do an interview that ran in your local paper? Talk to a TV reporter at a Breast Cancer Awareness Month event? Place a letter to the editor? Tell us! We want to know about your efforts to share information about Deadline 2020, the Artemis Project, and NBCC. Thank you for all that you do. Ron at rsallerson@breastcancerdeadline2020.org.

5 5 ACTION, NOT AWARENESS: ADVOCATE TALKING POINTS THE PROBLEM: Over the past 20 years, despite the billions of dollars committed to breast cancer awareness and research, we have not made any real progress toward ending the disease. o In 1991, 119 women died of breast cancer every day in the United States. In 2011, we lost 112 women every day. o The chance of a woman in the U.S. developing breast cancer during her lifetime has increased from about 1 in 11 in 1975 to 1 in 8 today. o Worldwide, we lost more than half a million women last year and, if nothing changes, we will lose 846,587 women globally in BREAST CANCER AWARENESS MONTH 2016: ACTION, NOT AWARENESS: Awareness of breast cancer is at an all-time high. Yet breast cancer still kills almost as many Americans each year as it did 25 years ago. We lost 43,583 women to breast cancer in 1991 in the U.S., and we will lose approximately 40,000 women and 400 men to breast cancer this year. o Awareness isn t working. Only action will end breast cancer. NBCC is taking the actions needed to end breast cancer and end breast cancer awareness month. o I ask others to join me in supporting Breast Cancer Deadline 2020, which challenges policymakers, researchers, and other stakeholders to work toward the goal of knowing how to end breast cancer by January 1, DEADLINE 2020 : Deadline 2020 is a bold initiative and call to action. Ending breast cancer is an urgent task and requires changing the conversation around breast cancer. o We need to move away from awareness and early detection. We need to move toward preventing breast cancer from happening in the first place. We also need to prevent people from dying from it. o That s where the research component to Deadline 2020 the Artemis Project comes in. ARTEMIS PROJECT : The Artemis Project is an advocate-led, innovative, missiondriven approach to research. The Artemis Project focuses on intensive work in two areas: o (1) primary prevention, or how we stop people from getting breast cancer in the first place; and o (2) preventing metastasis, or how we stop people from dying of breast cancer. The most recent report from Artemis participants shows progress toward developing a preventive breast cancer vaccine and can be found on the NBCC website (bit.ly/artemisinfo). HOW OTHERS CAN HELP: Donate to the National Breast Cancer Coalition today at Become an advocate by joining the National Action Network (bit.ly/nationalactionnetwork).

6 6 ABOUT NBCC: Founded in 1991, the National Breast Cancer Coalition s mission is to end breast cancer through the power of action and advocacy. NBCC increases federal funding for meaningful breast cancer research; monitors how research funds are spent; expands access to quality health care for all; and ensures that trained advocates influence all decision making that affects breast cancer. NBCC also has an advocate-led, innovative, mission-driven research effort, called the Artemis Project, focused on primary prevention and prevention of metastasis.

7 7 INTERVIEWING 101 Getting and Executing an Interview with your Local Newspaper or TV Station for Breast Cancer Awareness Month 2016 Your local newspapers and TV stations will be doing Breast Cancer Awareness Month stories throughout the month of October. Reaching out to tell your breast cancer story and to talk about the important work being done by the National Breast Cancer Coalition (NBCC) towards achieving Breast Cancer Deadline 2020 will help reporters in your community change the conversation around breast cancer we need action, not awareness. STEP ONE: Preparing for the interview Develop your sound bites : You may speak with a reporter for 5-10 minutes, but she/he will only use a line or two. This is an important exercise to complete before you offer an interview: determining your sound bites. Break down your thinking into two parts: 1. Your story: Write down the three to five things you want to say about your experience with breast cancer. Consider answering these questions in 1-2 sentences: Why are you working to end breast cancer? What are the actions you are taking? What can others to do to help? 2. NBCC Talking Points: Review the NBCC Breast Cancer Awareness Month talking points. While you do not need to use all of the suggested talking points, it is important to stick to what we provided you so we are consistent in interviews around the country. STEP TWO: Contacting your local paper or station If you do not have an existing contact at the newspaper or TV station, call the newsroom phone number (sometimes labeled as the news tip line ) or send the general newsroom account an . o NOTE: If this is not immediately evident to you on the paper/station s website, scroll to the bottom of the page and look for a Contact Us link. On the Contact Us page, there should be a newsroom phone number listed. If not, call the main line and ask for the newsroom. An assignment editor or reporter will answer the newsroom phone. Introduce yourself as a breast cancer survivor and/or advocate who has an important perspective to share and is interested in speaking with a reporter for Breast Cancer Awareness Month stories. If they need more background information, preview your personal story and/or NBCC talking points. At this point, the assignment editor or reporter will likely take down your name and contact information to pass along to a reporter. Or, less likely, the person who answers the phone may transfer you directly to a reporter or producer who is already working on a breast cancer story. If so, you can do the interview over the phone at that time or schedule a later time to talk, whichever you prefer. Note that if you are calling a TV

8 8 station, the reporter may want to do a pre-interview over the phone before she/he agrees to meet in person to film you. STEP THREE: Interview logistics and ground rules Whether you do the interview immediately or schedule it for another time, you should be prepared with the following: o Ask questions: Even though they are interviewing you, you should feel comfortable asking the reporter questions so you have a better idea of what to share with her/him. For example: What is your understanding of breast cancer awareness/treatment/mortality? Who else are you talking to for this story? o Attribution: As a reminder, reporters rarely use everything you give them, so it is important to think of your comments as sound bites that you would like to be quoted in the story. Reporters will ultimately pull a short quote or two from you and then generalize the rest of the conversation in their own writing as background. If there is information you would like to share but you do not want to be quoted, say this is for your background purposes, not for attribution. o Additional information: At any time, you can refer the reporter to Ron at NBCC (rsallerson@breastcancerdeadline2020.org) for additional information on Deadline 2020, the Artemis Project, NBCC s history, or for questions that you would rather not answer or questions that are overly technical or require additional medical or science background. STEP FOUR: Executing the interview Tell your story: Start with who you are and why you care about ending breast cancer. NBCC talking points: After you briefly introduce your story, transition to the talking points we shared with you. Anything you can do to stick to those important messages helps us reach the goal of spreading Breast Cancer Deadline 2020 around the country in a consistent way. Tricky or Uncomfortable Questions: If the reporter asks a question you don t know or you don t like, you don t have to answer it. If you don t know the answer, simply say, That question would be better answered by NBCC. Refer the reporter to Ron at NBCC, who can get the reporter the information she/he needs. Keep it concise: The reporter will only use a small part of your interview in her or his story, so remember the quick, one or two sentence sound bites you prepared. o EXAMPLES: I am working to end breast cancer by 2020 because I am a ten-year survivor and I do not want my daughter to face breast cancer. o We need less awareness and more action. We are still losing nearly the same number of women (and men) to breast cancer as we did 20 years ago. STEP FIVE: Sharing your good work Did you do an interview that ran in your local paper? Talk to a TV reporter at a Breast Cancer Awareness Month event? Tell us! We want to know about your efforts to share information about Deadline 2020, the Artemis Project, and the NBCC. o Ron at rsallerson@breastcancerdeadline2020.org.

9 9 Breast Cancer Truths and Myths The decline in breast cancer mortality is great news for all women and proves we re close to ending breast cancer. MYTH. It is true that after 60 years of no decline, breast cancer mortality decreased 35% from 1990 to However, the decline has been very slow per year and the rate is not increasing. In addition, it has declined at different rates for white and black women and younger versus older women. And while this decline is good news, we still need to remember that an estimated 40,730 breast cancer deaths (40,290 women, 440 men) are expected in At this rate of decline and with no significant breakthroughs, we are not likely to see the end of breast cancer very soon. Breast cancer ranks second as a cause of cancer death in women (after lung cancer). Between 1990 and 2011, the mortality rate for women of all races combined declined by 1.9% annually. For white women, breast cancer mortality declined by 2.4% annually while for black women, mortality declined by 1.4% annually during the same period. Death rates for breast cancer have declined faster for women under age 50 than those over age 50 and were greater for white women than black women. From 2007 to 2011, rates among women younger than 50 decreased by 3.2% per year in whites and by 2.4% per year in blacks, while among women 50 and older, rates decreased by 1.8% per year in whites and by 1.1% per year in blacks. In addition, we don t actually know why mortality rates decreased. We need more research to significantly reduce the number of deaths from breast cancer and understand the underlying causes of the disease. We must continue pushing to find the causes of this disease. With new treatments we can now cure breast cancer. MYTH. We still do not know how to cure breast cancer. We do have more treatment options and more targeted therapy, but we don't understand the disease well enough to know for certain which cancers will come back and/or spread, and which cancers will not. Many breast cancer survivors are now celebrating 10, 20, 30 or more years of being "cancer-free," which is certainly a cause for celebration. However, an estimated 20 to 30 percent of women diagnosed with invasive breast cancer will have a recurrence and may go on to die of their disease. And while breast cancer mortality rates have decreased 35

10 10 percent from 1990 to 2011, no one knows the exact cause of the decrease. Many attribute this decrease to the introduction of better treatments and, to a much smaller extent, to early detection. Given the billions of dollars of investment in research, this lack of understanding and the slow rate of mortality decline, 1.9% annually over the last 20 years is unacceptable. The fact is that this year in the U.S, over 40,000 women will die of breast cancer. Until we better understand the biology and progression of the disease, being cancer-free is not the same thing as being cured. And we cannot tell any individual woman at the end of her treatment that she is cured. We just do not know. It s hard to look at the disease in this way it seems pessimistic. But creating a false sense that we already have a cure is simply misleading. We don't know how to prevent breast cancer. TRUTH. Although there are factors associated with an increased risk of breast cancer and certain factors that decrease the risk of breast cancer we do not know how to prevent breast cancer in the average healthy woman. Current factors known to contribute to overall breast cancer risk are mostly uncontrollable, including being female, age, personal and family breast cancer history, certain genetic factors, first menstrual period before age 12, menopause after 55, breast density and race. A few factors that can be controlled that have shown increased risk include obesity, alcohol consumption and lack of physical activity. For women who have a high risk of breast cancer, there are drugs that may help reduce their risk of developing breast cancer, but they have significant side effects. There are no drugs, however, that will definitively prevent breast cancer. Research on these chemoprevention drugs has been done on high-risk women only, so we don't know anything about how these drugs would impact most women of average risk. Chemoprevention drugs sound exciting. Who wouldn't want a drug that could ward off breast cancer? But given the many unanswered questions and some serious side effects, the potential harms may outweigh the potential benefits. Among many other things, we don't know if the reduction in risk is short term or if the drugs reduce the risk of dying from breast cancer. There are special challenges to giving risk reduction drugs to healthy women. Most women will never get breast cancer, whether they take the drug or not. So only a small proportion of women taking the drug will benefit, while many others will be unnecessarily exposed to

11 11 side effects and other known and unknown harms. Also, most women with breast cancer do not have a family history of the disease. Except for growing older and certain genetic factors, most women with breast cancer have no clear risk factors. We can't tell any individual woman, "Do this or take that and you won't get breast cancer." That is the compelling reason that NBCC is supporting the development of a preventive vaccine for breast cancer. Women with metastatic breast cancer can be cured with early diagnosis. MYTH. There is no cure for metastatic breast cancer. While researchers have identified treatments that sometimes shrink or slow metastatic tumors, such as estrogen blockers, radiation and chemotherapy, they are most often temporary. Treatments to eradicate metastasis do not exist. There is no cure. Women do not die of primary breast cancer. Over 90% of breast cancer deaths are due to metastasis - the spread of the disease to other parts of the body - such as to the bone, lungs, liver and brain. Approximately 155,000 women are living with metastatic breast cancer in the United States, and this is projected to rise annually. However, the exact numbers are neither collected nor maintained, and we do not have information on historical trends. The NCI s Surveillance, Epidemiology, and End Results (SEER) Program, which is the primary source of population cancer statistics, only records information on the stage at diagnosis, initial course of treatment, and date of death. SEER does not have information on what happens between initial diagnosis and death, such as recurrences, metastasis and additional treatments. Between 20 and 30 percent of the women considered cured of breast cancer will suffer recurrences and metastatic spread of the disease, often many years after their initial diagnosis. In the United States, while overall incidence has fluctuated over the years, the incidence of women with an initial diagnosis of advanced breast cancer has not. Rates of diagnoses of breast cancer that has metastasized have remained stable since Congress and the Administration play no role in what happens in breast cancer. MYTH. Breast cancer is a political issue. Congress and the Administration make important funding and policy decisions in breast cancer detection, prevention, treatment and care. The government is the only body with access to the amount of money needed to perform the appropriate breast cancer research, and explore cause and effect

12 12 relationships that could lead to breast cancer prevention and ending the disease. Sustained and significant involvement on the federal level is an essential factor of ending breast cancer. Elected officials also have the power to change systems of access to care and treatment, including the reform of the health care system, regulation of the drug approval process and public health campaigns and access to new drugs. This is why, since its founding, NBCC has addressed breast cancer as a political issue. Most breast cancer survivors won t be able to understand the science and are too close to the issue to participate in breast cancer research decision making. MYTH. Breast cancer survivors who have been trained and educated have both the first-hand patient knowledge, as well as the ability to advocate on behalf of others, that are an important check and balance in research decision making. Why exclude those that have intimate knowledge of the very important quality of life issues and treatment options of the disease? Consumers who have been trained to understand the research process add a crucial element to all panels, committees, clinical trials, and grant reviews involving breast cancer decision making a true reality check. NBCC s Project LEAD is an innovative training program that educates breast cancer activists in the concepts and language of science. Graduates receive a basic foundation that equips and empowers them to better explain cancer research information to their colleagues, clients, friends and family. Many take seats on committees that determine breast cancer policy, review grant proposals and work with researchers on clinical trials. In these ways, advocates help shape the national research agenda. I can make a difference. TRUTH. No matter what your role advocate, educated patient, supporter of a loved one, or informed consumer of news and research you can use your knowledge and your voice in the mission to end breast cancer. NBCC envisions a world where our organization doesn't exist. That's right. Our goal is to close our doors forever. Not a business plan you hear too often. NBCC works everyday to

13 13 create a world where no one, directly or indirectly, has to worry about a diagnosis, undergo treatment, or lose a special person to breast cancer. We've made important strides, but we haven't yet figured out how to prevent women or men from dying of it. The urgency is great, the knowledge is there, and the need for public involvement is paramount. Now we have to do and demand more. We can do it, we can end breast cancer.