by Susan Brooks Back to Advocacy main 2008 NBCCF Annual Advocacy Training Conference Download Event Info Amidst the election year buzz about the upcoming presidential election, over 700 women descended on our nation’s capital to learn about and advocate for issues related to breast cancer during the annual National Breast Cancer Coalition Fund advocacy training conference and lobby day in late April. I was fortunate to have had the opportunity to be among those committed individuals on behalf of the Breast Cancer Care & Research Fund along with my fellow board member Dawn Williams. NBCC is a truly grassroots advocacy group that has made historic strides in advocating for funding and policies that impact the treatment and research of breast cancer in this country. NBCC is a coalition of over 100 member organizations as well as individual members whose three main goals are research, access and influence. NBCC has gone far beyond the pink ribbons and has effected real change in the arena of breast cancer. Among what I consider to be their crowning achievements are the establishment of the Department of Defense Breast Cancer Research Program and the Breast and Cervical Cancer Treatment Act. The DOD program was created as an innovative approach to funding breast cancer research that came about as a result of the strong lobbying efforts of NBCC and the leadership of Senators Harkin and D’Amato. Participation of patient advocates in the grant process was unique when this began and one of the most significant achievements of this program led to the understanding of the HER2/neu gene and the development of Herceptin. NBCC’s influence in the passing of the treatment act gave a reason for low income women to participate in the screening programs available to them. Prior to the treatment act, many programs were available to provide breast cancer screening, but what was the point of a women getting screened if she had no means for treatment. These are but two examples of the wonderful work that NBCC does. Every year, the NBCCF holds a conference for breast cancer advocates from across the nation and even some that come from other countries. The purpose of this conference is to train advocates in the skills needed for effective advocacy, to empower them to better serve their state and local communities, and to provide them with the latest information related to advances in breast cancer treatment, research and policy. It’s a pretty incredible experience to sit in a room with all these women who have fought this battle and still have the dedication to continue As a health educator by training and the owner of Women’s Health Boutique where I provide products for women during and after their treatment for breast caner that are covered by insurance, NBCC’s roll out of their Framework for a Health Care System Guaranteeing Access to Quality Health Care for All was very encouraging to see (click here for supporting information). The mood that I observed at the conference and even in the halls of Congress is that the political will to change our health care system is building. The framework put out is just that, a framework. It lays out components essential to quality care for all against which NBCC will measure any proposed health care legislation. The principles include the fact that health care is a basic human right, that it is fundamental to a productive society, that a true system must provide comprehensive benefits to all and be based on best practices, and that all individuals must contribute to the system based on ability to pay. Its core values include access, information, choice, respect, accountability, and improvement. Important to me is how to reduce the overall costs so that everyone can be covered and ensuring that we have equity in care so that we don’t see the kind of rationing of services that exists now. In our first plenary session we learned that the science of breast cancer is such that biology now trumps staging and even screening in its importance for the treatment of breast cancer. Doctors and scientists are now looking to biological and DNA markers for treatment efficacy and further research on the distinct types of breast cancer. This session also was the first of several sessions that touched on the need for centers of excellence to collect and communicate the best practices in medical care to avoid the issues discussed in our second plenary. The presenters in our second plenary session made it abundantly clear that along with unconscionable issues with lack of health care coverage is the cost of over-treatment in our country. I don’t just mean the financial cost, as substantial as it is, but also the cost in terms of quality and quantity of life. For instance, despite the fact that the U.S. spends $15 billion a year on the last six months of cancer patients lives, all the advances made in cancer care have only given those patients a seven week increase in lifespan. Compare that to cardiovascular disease, where advances have increased lifespan by five years. When you look at healthcare spending, the U.S. spends two times per capita than the second ranked county (Sweden) yet we only rank 26th in the world in life expectancy. One statistic that was given was that 33,000 people are killed each year because of unnecessary care on top of the 18,000 who die because of lack of care. It is also an accepted fact that geography is destiny when it comes to healthcare. Where you live in many cases determines what treatment you will get for any given disease. All this information made it clear to me that we must educate ourselves on quality of care issues and as a society examine what quality of life means. I believe that we need more focus on humanistic medicine so that quality of life is a discussion on the table for all treatment planning. We must become more politically active and fight for better collaboration among researchers and practitioners through centers of excellence so that as a society, we can reduce the harm and cost of over-treatment and put those savings into better care for ALL Americans.

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