Today the Metastatic Breast Cancer Alliance put forth a landscape analysis on the needs of patients with metastatic breast cancer (MBC). This report follows and refers to a recent, Pfizer-backed survey of 2,090 men and women which revealed major deficiencies in common knowledge about the condition.
Among U.S. adults surveyed in April 2014, 72 percent (mistakenly) believe that advanced breast cancer is curable if detected early. Half of the respondents suggested that people living with metastatic disease have it because they didn’t take appropriate treatment or preventive measures. As summarized in the larger report, over 60 percent said they knew “little or nothing” about metastatic breast cancer.
“There are a lot of people who don’t know what metastatic breast cancer is,” said DeAngelo Williams, a running back for the Carolina Panthers at a meeting of the Alliance held today in Manhattan. The football player spoke of his mother’s death last spring at age 53, while receiving hospice care, from metastatic breast cancer. The disease also took the lives of four of Williams’s aunts. “When breast cancer took my mom, it met its biggest enemy,” he told the group.
The Metastatic Breast Cancer Alliance, founded one year ago, represents a cooperative effort among over twenty cancer charities and industry. The Alliance has received support from Celgene, Eisai, Eli Lilly Genentech, Lilly, Novartis and Pfizer. In addition, the Avon Foundation for Women has provided major administrative support to the group, including personnel.
The Alliance used a mix of literature reviews and meta-analyses, along with interviews with scientists, patients, caregivers and “thought leaders,” to explore five areas relevant to advanced breast cancer: research including basic science and clinical trials; quality of life concerns; available information and support for people living with the condition and for their caretakers; epidemiology; and public awareness.
The report, at over 120 pages, highlights gaps in each of these realms. It includes a summary of currently-funded trials, basic research, numerous references and a handy page (23) of acronyms and terms relevant to MBC.
“We need to set realistic goals,” said Katherine O’Brien, a woman who lives in Chicago with metastatic breast cancer and serves on the board of the Metastatic Breast Cancer Network, one of the organizations participating in the Alliance. “I wish we could find a way to prevent metastases entirely,” she said about progress. “But that’s a tall order. If in five years people could at least understand what it means to have metastatic breast cancer, and there were better communication about it, that would be helpful,” she said.
The analysis found that although the majority of patients experience emotional distress, such as depression and anxiety having to do with their condition, only a small fraction receive treatment for those symptoms. Like other chronic and debilitating illnesses, metastatic breast cancer can lead to social withdrawal, the Alliance reports: “Over time, sources of support erode. Friends and family may not comprehend the toll that continuous treatment takes or the inevitability of disease progression.”
Karen Durham lives with metastatic breast cancer, advocates and serves on a scientific advisory committee of the Susan G. Komen Foundation, one of the Alliance members. She spoke at today’s meeting, and described what it’s like having MBC. Friend and neighbors may have trouble appreciating what it’s like to have this condition, she considered. “When you’re living with metastatic breast cancer, every month counts,” she said. “Crumby is my new normal. And I’m glad to have that,” she added.
Basic epidemiology – in terms of how many people live with MBC – is lacking. Every year, some 40,000 people, over 99.9 percent women, die from breast cancer in the United States; this translates to more than 108 deaths per day (a small jet-load of people). Most deaths occur in people with advanced, Stage 4 disease. Because most breast cancers are found and reported only at the time of first diagnosis, only a small fraction of metastatic cases are counted in SEER and other databases.
Survival trends – “clinical trajectories” – go unchecked for most MBC patients. This lack of prognostic information leaves patients, doctors and researchers in the dark about prognosis, if and how that may be changing.
The report highlights disparities in survival rates between blacks and others in the United States. As considered in the analysis, reasons for those differences may include variable access to health care, and that a higher fraction of blacks have triple-negative breast cancer, an aggressive subtype.
The big picture is that many patients living with MBC need more help than they’re receiving, and many are reluctant to ask for it. A large fraction reported not receiving “individualized” information about their condition, and not understanding the nature of their disease or treatment options. And it’s not just emotional, or informational, needs that go untended; physical complaints go unmentioned, too, according to multiple surveys cited.
Financial toxicity hurts, also. The report cites a recent ASCO presentation, based on a registry of mainly “highly-educated and Caucasian” in which financial concerns led 9 percent to choose a less effective but less costly treatment than another, 20 percent postponed getting psychological help, 40 percent reported depleting their savings, and 16 percent changed to smaller living arrangements, due to financial concerns.
“Stigma persists,” said Musa Mayer, an advocate who leads AdvancedBC.org and serves on the Alliance steering committee. “There are communities where people with MBC live with it in silence,” she said. “The Alliance will lead more women who are living with metastatic breast cancer to talk openly about their disease,” she said. “We have to bring that dialogue out.”
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