Era of Hope 2011 Plenary Sessions

Session Title: Morning Session – The State of Science

Title of Presentation: Current Cost of Treatment

Mark Pegram, MD, University of Miami: It’s a pleasure to introduce Pat Haugen from the South Dakota Breast Cancer Advocacy Group. You know Pat is the Chair of our Integration Panel for this Fiscal Year and I can tell you she’s truly been an inspiration to me and I’ll have awfully big shoes to fill next year. She really knows how to keep the trains running on time. Under her leadership on the panel it’s one of the few years where I think we’ve actually ended the—the Study Sections on time, so this is really fantastic.

Patricia Haugen, South Dakota Breast Cancer Advocacy: Thank you. As we have just heard even with mammoth financial and personal investment in almost every facet of breast cancer, progress against measures that are meaningful to patients, survivors and their family members is not only painfully slow, but progress itself is questionable in some areas.

We want for ourselves and for others quality lives that are long and well-lived, not cut short by this disease or absorbed by a lifetime of worry, interventions, and side effects. Whether it is through primary prevention, prevention of metastasis or beneficial treatments that extend quality life while living with metastasis we don’t want our lives ended early because of breast cancer.

So how do we understand the current state-of-the-science as it has been presented here today and in relationship to what is important to us? The negative impact of breast cancer worldwide on women’s lives is increasing and we still do not know how to prevent it. Much of the increase in incidence in this country is due to diagnosis of DCIS and potential over-diagnosis and treatment because we are not able to distinguish which patients will develop invasive breast cancer. This results in many women being treated with interventions that not only may not help them but may harm, plus the human toll and anxiety that we all know a cancer diagnosis brings along with the lifetime of uncertainty.

In spite of the investment in and widespread use of screening, we have seen little or no reduction in the incidence of women diagnosed with advanced breast cancer, those breast cancers that are more difficult to treat and are more likely to metastasize.

Risk prediction and alternatives for risk management are inadequate and of limited value to an individual. As was presented in the first talk, many of the risk factors such as age are not modifiable, with half of all breast cancers occurring in women over the age of 62. Little is known about the interrelationships between various risk factors and how those risks relate to our current understanding of breast cancer types. Limited understanding of the individual risks is very costly from both a financial and human aspect. Many women misunderstand their own risk and have no good options if they are at increased risk.

There are continued racial and socioeconomic disparities and outcomes in access to quality care including delayed diagnosis and unequal treatment along with limited understanding of the impact of disease differences. There has been incremental progress in breast cancer treatment resulting in some improvements in mortality. Although our understanding of the disease has improved, many so-called improved therapies are more likely to result in increased toxicities and negative side effects creating especially in those with metastasis an accumulating burden of marginally effective interventions rather than significantly prolonging quality life. In many cases it’s difficult for patients to see these as the breakthroughs that are sometimes celebrated by other stakeholders. About one third of those diagnosed with breast cancer will suffer recurrence and metastatic spread often many years after their diagnosis.

We still cannot prevent metastasis or cure it. The financial costs continue to increase with equivalent balance of benefit in mortality—with no equivalent balance of benefit in mortality improvement. How can this be sustainable and should it be? Can we change our approach so that we achieve more meaningful results for patients with what are precious resources—both financial and human? What measures are meaningful to patients and survivors? As we’ve heard there are many issues with 5-year survival numbers, a measure that does not present the real status and picture of where we are with breast cancer. Of greatest concern is that the measure on its own without equal emphasis on mortality and the true human impact of the disease does not represent the patient and survivor experience.

Many who are included in the so-called survivor number will go onto have recurrences in metastatic disease and may go onto die of their disease, yet the reality of their breast cancer is not represented. And how do we get treatment improvements that we can celebrate as really prolonging quality of life without terrible toxicities?

And as our presenters have discussed, this may not even be about incremental improvement versus breakthrough advances, but that there are diminishing returns from our current system and approach to breast cancer especially because of how we now understand the disease and the types. As was stated regarding further reductions in breast cancer mortality, multiple factors will conspire to blunt further reductions in the future. We can't afford infinite incrementalism anyway be it number of patients, time, or money, so business as usual is not—is by definition a path limited, having any minimal—if any impact and a waste of resource. It’s time for a new strategy.

So what about the human cost, the human impact of the situation in which we find ourselves? A few thoughts; it is about lives ended early by metastatic disease for which we have achieved minimal progress and added increasingly toxic and costly treatments that not only compromise quality of life but many times the financial stability of women and their families. It means the deep profound sadness of women who know that they will be remembered but will not be present to enjoy the family celebrations, a child’s school graduation, the birth of a grandchild, the simple joy of living and being loved. It is about lives cut short and treatments that fail and billions of dollars with limited return.

It is about late stage diagnosis and inadequate treatment because of disparities and a lack of access to health care. It is about a young woman whose dream of having children is distant as she enters a world unexpected. It is about loss and fear and anxiety and pain and discomfort. It is about a lifetime of side effects and risks due to treatment a woman didn't need. It is about living with the constant unknown and lurking fear of recurrence and the knowledge of how little progress we have made against metastatic disease.

It is listening to presentations about improved 5-year survival and thinking how meaningless those numbers really are to me. It is about the worry for the next generation and whether anything will be better for them. But it is also about our continued confidence and the capability of an extraordinary research community that is dedicated to this disease and an advocate community that will not step back from our goal to end breast cancer. So have we made progress? Some, but it is not enough; it is obvious there are no easy answers, but we know that business as usual is not acceptable to us and it is not acceptable to the dedicated, committed researchers, clinicians, and advocates who are represented at this conference.

So I challenge all of us including advocates to think differently, to collaborate, to discuss, to engage cross-discipline, to be open to new ideas, to set goals, to challenge your own beliefs, to question the system, and to create new approaches and game plans that will result in outcomes that bring true meaning to patients and their families. We have the intellectual capacity and the resources to make truly meaningful progress. We need and have confidence in all of you; you represent the best and the brightest and our lives depend on what you will achieve. Thank you.