Changing the Landscape for People Living with Metastatic Breast Cancer: A Report from the Metastatic Breast Cancer Alliance

MBC ReportIt is estimated that 20 to 30 percent of those diagnosed with “early-stage” breast cancer later develop a metastatic form of the disease, metastatic breast cancer (MBC). It is unclear which breast cancer patients will have metastatic recurrences, but metastasis is the major cause of treatment failure and the duration of survival after a metastatic diagnosis has only increased by a matter of months in the last several decades. In fact, metastatic breast cancer is responsible for killing more than 40 thousand women and men each year. While there is some information on the emotional, physical, and practical (including financial) needs for this group of patients, there are few support systems in place to help them.

Against this background, the Metastatic Breast Cancer Alliance (MBCA), a coalition of 23 breast cancer groups and 6 pharmaceutical companies (established Oct., 2013) released a 132-page report, Changing the Landscape for People Living with Metastatic Breast Cancer, to identify gaps in what is known about metastatic (stage 4) breast cancer.

The analysis was overseen by a steering committee that includes Musa Mayer, AdvancedBC.org; Marc Hurlbert, Avon Foundation for Women; Cara Thompson, Celgene Corporation; Virginia Knackmuhs, Shirley Mertz, Metastatic Breast Cancer Network; Kelly P. Hodges, Sisters Network Inc.; Kimberly Sabelko, Susan G. Komen, and a working group comprised of representatives of member organizations. The Alliance receives funding from Celgene, Eisai Inc, Genentech, Lilly Oncology, Novartis Oncology, and Pfizer.

Changing the Landscape focuses on five key areas: (1) research funding, (2) quality of life, (3) patient education and support services, (4) epidemiology, and (5) public awareness. Based on analyses of clinical trials, research grants (funded), patient responses to surveys, articles and epidemiological studies, and interviews with select organizational leaders and researchers, it concludes that limited social awareness of metastatic breast cancer contributes to major gaps in information, research, and support services.

This comprehensive report reveals many gaps and challenges with regard to metastatic breast cancer research, public awareness, information, and support. There are important caveats, contexts, and implications for its findings that deserve thoughtful attention.

First, the report acknowledges that one of the most critical missing elements of the metastatic breast cancer landscape is that there is no clear picture of how many cases actually exist.

Breast cancer cases are reported at the time of a first diagnosis only; recurrence rates of 20 to 30 percent are estimates. Data from the National Cancer Institute shows that the five-year survival rate for people diagnosed with metastatic breast cancer is about 20 percent, and the average prognosis is only two to four years. However, without accurate parameters of the metastatic breast cancer population, it is difficult to design research studies to examine symptoms, side effects, treatments, comorbidities (the simultaneous presence of two chronic diseases or conditions in a patient), health disparities, psychosocial needs and other quality of life issues, and overall outcomes. Likewise, it hinders the development of adequate, evidence-based health communication materials and support services.

Second, information about the evolution of metastatic disease is crucial for developing treatment plans and new therapies.

Most breast cancer research uses tissue from primary breast cancers instead of metastatic tissue. Therefore, little is known about why some cancer cells metastasize and others do not, or how microenvironments impact how metastases occur, change, or differ across tumor sites or pathways. In addition, researcher Dr. Pat Steeg has argued that clinical trials may be focusing on the wrong endpoints, thereby limiting the extent to which treatments can help those with advanced cancer.

In addition, researcher Dr. Pat Steeg has argued that clinical trials may be focusing on the wrong endpoints, thereby limiting the extent to which treatments can help those with advanced cancer. Clinical trials are only designed to evaluate a drug’s ability to shrink established tumors rather than its ability to block metastatic processes. Unless clinical trials are redesigned to study metastasis-preventive compounds, Steeg says, we are not likely to see a decline in breast cancer metastasis.

The landscape report recommends having more research on the biology of metastasis, new endpoints in clinical trials, expanded tissue banks, and incentives both to avoid duplication in research and to expand knowledge and innovation by holding multi-institution, multi-investigator trials (rather than single investigators conducting single-institution trials).

Third, funding for metastatic research is lacking.

According to the MBCA report, research of metastatic breast cancer makes up less than 5 percent of breast cancer funding. When taking into account major funders in both North America and the UK (from 2000 to 2013), that percentage goes up to just 7 percent of a $15 billion investment. If these figures included only grants that focused on controlling, stopping, or otherwise impacting existing metastases (rather than also including preventing it), the percentages would likely be smaller yet.

Underscoring the dire need to understand causation as well as how to treat cancer metastasis regardless of tumor origin, the World Health Organization estimates that the number of new cases of cancer, in general, will increase from 14 million to 22 million within two decades, with cancer deaths rising from 8.2 million to 13 million a year.

Fourth, the report categorizes types of metastatic breast cancer research from 2000 to 2013, including a sample of clinical trials and funded research grants.

“For the scientific research chapter alone,” writes BCC member Jody Schoger in Oncology Times, “Changing the Landscape deserves merit.”

The report’s research chapter categorizes studies and grants according to two systems, how cancerous cells develop and how they spread. Using Douglas Hanahan and Robert Weinberg’s

Using Douglas Hanahan and Robert Weinberg’s Hallmarks of Cancer, the classification system includes six biological capabilities acquired during the development of human tumors. Based on Patricia Steeg’s Steps of Metastasis, studies are then organized in terms of how cancerous cells leave the original tumor site, enter the blood stream or lymph system, and then go on to colonize a new area. For Schoger, “this thorough charting will focus essential dialog between researchers, advocates, and industry.”

For Schoger, “this thorough charting will focus essential dialog between researchers, advocates, and industry.”

Fifth, the MBCA report concedes that there is too much industry influence, leading to duplication in clinical trials and the development of “me-too” drugs.

An analysis from the National Institutes of Health estimates that the cost of cancer care is projected to reach $158 billion by 2020. In 2010, medical costs associated with cancer were projected to reach $124.6 billion, with the highest costs associated with breast cancer ($16.5 billion).

Approximately one-quarter of the cost of caring for patients with cancer currently is related to drug therapy. More than 90 percent of the anticancer agents approved by the U.S. Food and Drug Administration from 2005 to 2009 cost more than $20,000 for a 12-week course of treatment. Eleven of the drugs approved in 2012 for cancer were priced above $100,000 per year.

With skyrocketing prices, the oncology drug industry has grown substantially from under $5 billion in 1998 to $19 billion in 2008 to $80 billion in 2012. Market researchers forecast that by 2018 the industry will reach over $100 billion. A reason for the boon is that the vast majority of drugs on the market are minor variations of older ones, no better but carrying new patents and higher prices.

Sixth, the report finds that metastatic breast cancer patients are “typically not well informed in areas required for decision making about their care, and patient–clinician communication can be difficult to navigate.”

Most of the focus on breast cancer is centered on detection, survivorship, and early-stage disease. This leaves persistent gaps in information about the complexities of breast cancer, including the risks and benefits of treatments, acute and latent side effects, scientific controversies, the role of clinical trials, impacts on quality of life, palliation and end of life care, and the stigma that many metastatic breast cancer patients feel within the breast cancer community and the public at large.

Moreover, abundant attention to fundraising and generalized awareness messages creates a situation in which those in need of evidence-based information, understanding, resources, and other forms of social support have been largely ignored.

Seventh, public awareness about metastatic breast cancer is minuscule.

The MBCA report references a Pfizer-sponsored online poll (2014) of more than 2000 adults (sampling frame unspecified), which found that 72 percent of respondents mistakenly believed that advanced breast cancer is curable if it is “diagnosed early,” and half of those surveyed believed that breast cancer progressed because patients did not take the right medicine or preventative measures. More than 60 percent of the respondents reported that they knew little to nothing about metastatic breast cancer.

Eighth, the analysis identified a series of actions for the next phase of the Alliance’s work that are aligned with their goals of advancing research, increasing understanding, and improving knowledge and awareness of metastatic breast cancer.

To advance research, the Alliance plans to advocate for new clinical trial designs and convene small think tanks of experts and advocates and summits with scientists and medical experts.

To improve knowledge and information, MBCA aims to build collaborations among Alliance members and unnamed stakeholders and work with its partners to develop information about metastatic breast cancer and pilot test decision-making tools.

To increase understanding of metastatic breast cancer, the Alliance intends to develop public awareness materials and leverage the capacity of Alliance members and improve communication among patients, caregivers, and providers.

Importantly, the organizations and partners that comprise the Metastatic Breast Cancer Alliance do not represent the full community of breast cancer groups or researchers focused on metastatic disease. Therefore, it will be crucial for the group to increase its scope of work to encompass a diverse range of goals, needs, and experiences while also addressing the systemic issues that shape the broader breast cancer context as well as how this context intersects with the metastatic breast cancer population as a whole.

Source: Metastatic Breast Cancer Alliance. 2014. “Changing the Landscape for People Living with Metastatic Breast Cancer,” c/o Avon Foundation, 777 Third Avenue, New York, NY 10017.

Read the Full Report » (PDF)

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