by Dawn Williams Back to Advocacy main 2008 NBCCF - A grassroots organization dedicated to ending breast cancer through action and advocacy Download Event Info My experience with the National Breast Cancer Coalition’s (NBCC) Annual Advocacy Training Conference began several weeks before I arrived or attended a session in Washington D.C. Prior to the event, I received numerous NBCC mailings and e-mails, which invited me to become a part of a movement that provoked a level of excitement unlike any I had previously experienced. NBCC not only wanted to educate those in attendance by providing an impressive list of speakers and panelists, but to also enhance our goal of increasing breast cancer activism to Congress. NBCC is a grassroots organization dedicated to ending breast cancer through action and advocacy. The 16th Annual Advocacy Training Conference did an exceptional job embodying both components. This conference attracts many breast cancer survivors, loved ones of those who are battling or have battled breast cancer, individuals in the medical field and college students, all of which would take on the role as breast cancer activists. Through its advocacy efforts in our local communities and ultimately in Congress, NBCC’s desire to make an impact on breast cancer begins by bringing individuals from across the country to become trained in the “Nuts and Bolts of Congress” as well as “Strategies for Effective Lobbying”. The Lobby Day Briefing sessions informed attendees of NBCC’s legislative priorities and the assurance that by the end of these sessions the conference attendee would be well prepared in making an impact on policies involving breast cancer. There was also an orientation for first-time attendees that provided an overview of the conference structure as well as an introduction of select members of NBCC’s “Team Leaders.” Led by the excitement of the team leaders, the first- time attendees were energized as they exited orientation and headed towards the grand ballroom for the opening session. An introduction of NBCC’s president Fran Visco set the tone. After her introduction she proceeded to open with a dedication of the conference to Karin Noss, a member of NBCC, who had recently lost her battle to breast cancer. As Visco went on to convey Karin’s fervent dedication to the work of NBCC, at times it was difficult for her to hold back the tears. As I glanced around the grand ballroom which was almost filled to capacity, I was reminded of the enormous number of lives impacted by this disease and I thought that in 2008 with information technology and medical science at an all time high, there has to be more that we could do to battle cancer. How can we turn the emotions we feel from losing loved ones into actions that will not only save lives but also honor their memories? Might this be a driving force behind NBBC? NBCC has turned what could have be an emotional “pity party” where survivors and loved ones gathered to bemoan the current state of health care in this country and feel sorry for themselves. But instead this was an event where an accomplished group of women (and a few good men) gathered to be trained to speak the truth about breast cancer and empower individuals to take this battle to the power of government officials on Capitol Hill. Over the course of three days, attendees participated in six plenary sessions and several workshops that would equip them with the knowledge and skills necessary to not only impact Congress as the final day of the training would culminate with great lobbying efforts on Capitol Hill, but would also prepare us to return home and continue soliciting assistance from our local government as well. The conference sessions provided an enormous amount of information of which I will briefly highlight. So What’s New in Breast Cancer? This session featured Susan Love, M.D., Donald Berry, Ph.D and Patricia S Steeg, Ph.D, breast cancer researchers who were excited to share some of the leading advances in breast cancer treatment. The statement by Dr. Susan Love that “biology is trumping staging” had the audience quickly responding---“What do you mean?” She went on to explain that researchers are now looking at the DNA of breast cancer cells. They now classify breast cancer as four different types: Luminal A, Luminal B, Her2-type and Basal type---this changes how breast cancer is treated. A test called Oncotype DX is a new way of analyzing breast cancer cells. This test allows an oncologist to submit a tumor sample of a newly diagnosed breast cancer patient for further analysis to determine the likelihood of breast cancer recurrence thus allowing the oncologist to tailor chemotherapy treatment. The test would reduce the chances of over-treating or under-treating patients with breast cancer. Currently, Dr. Love is conducting a study to look at a new way to screen for breast cancer. This minor procedure would be performed in a doctor’s office where a physician would collect breast fluid to evaluate if a precancerous cell was present. Quality Health Care: Delivering on the Promise This session featuring Carolyn Clancy, M.D, Agency for Healthcare Research & Quality; Paul Levy, M.A., Beth Israel Deaconess Medical Center; and Shannon Brownlee, M.S., New American Foundation would deliver thought provoking information. Dr. Clancy believes quality health care would consist of supporting patients who choose a less aggressive treatment option. She also offered a website www.effectvivehealthcare.ahrq.gov as a resource for patients to gain additional information to make informed decisions about their health. Paul Levy gave examples on how to hold the medical field to a higher standard in hopes of providing better health care. Shannon Brownlee author of “Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer;” went on to recount the issues surrounding the use of how high-dose chemotherapy with bone marrow transplants to treat metastatic breast cancer patients. Desperation to control the cancer that was spreading throughout the body resulted in doctors and patients advocating for insurance companies to pay for this expensive procedure that had not been properly tested for its efficacy. Several years later research studies would prove no benefit to high dose chemotherapy with bone marrow transplants in comparison to the conventional treatment for breast cancer. Quality healthcare would look at comparative effectiveness and cost effectiveness. NBCC’s Framework for a Health Care System Guaranteeing Access to Quality Health Care for All During this session the president of NBCC, Fran Visco gave an overview of how this framework could be used to assist our government in creating a health care system that grants access for everyone present in the United States. The core values of this system would include: Access, Information, Choice, Respect, Accountability and Improvement. I was thrilled by the presentation of NBCC’s framework. This organization was not waiting around to see what the next President of the United States would do about healthcare reform, they were proactive in creating this framework with the hopes of breast cancer activists at the table with Congress developing a system that would eradicate breast cancer but ultimately benefit all. To learn more about this framework visit www.stopbreastcancer.org. NBCC’s Annual Advocacy Training Conference culminated with a visit to Capitol Hill where team leaders and newly trained activists would meet with Congressional offices to solicit support for NBCC’s legislative priorities. The knowledge and skills acquired over the past three days would be soon put into action. The meetings were centered around the Breast Cancer and Environmental Research Act (BCERA) and the importance of passing the bill this year. This bill would establish a national strategy to study the links between the environment and breast cancer, which is very much needed today. One senator, Tom Coburn would block the bill, but NBCC would not lose hope, for the events of the day inspired us even further and we were better prepared to make a difference as a result. During our lobbying, NBCC members rushed in and out of meetings making sure to meet with every state representative. At the conclusion of all scheduled meetings that day, NBCC breast cancer activists would gather at the Congressional Awards reception to honor members of Congress for their continued support of the organization’s goal to end breast cancer. Just before the reception was over, Fran Visco made an announcement that NBCC members would be allowed seats in the Senate Gallery. With this news, there came a surge of energy. We were given an opportunity to see whether our efforts were fruitful. Following several security checks, we were finally seated just in time to hear Majority Leader, Senator Harry Reid present the BCERA bill for debate. Unfortunately, there was an objection by Senator Coburn. The revelation of this bill being blocked did not deter those who participated, but actually served as inspiration to engage others to join this organization’s efforts in getting this bill passed. Our work will only continue once we return home. The fight continues………….

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