Racial and socioeconomic factors continue to play significant roles in how people are treated for breast cancer and how research is conducted, according to the State of Breast Cancer Report, recently published by Susan G. Komen for the Cure, of Dallas.
The nonprofit organization produced the report to provide a current look at progress made in detection, diagnosis and treatment of breast cancer and found that health care disparities remain a top issue of concern, not only in screening and treatment, but in research as well.
Globally, more than 1.1 million people will be diagnosed with the disease and more than 410,000 will die this year.
"There's been a lot of progress in breast cancer, but it hasn't reached everybody," said Cindy Geoghegan, executive advisor of scientific community relations at Komen.
"The standards of care aren't really clear either. Treatment can vary based on the patient, practitioner and location," she said.
Early detection often is prevented by poverty and lack of access to quality care, but once breast cancer is diagnosed, race, poverty and lack of health insurance lower the chance that treatment will be successful.
For example, African American women are less likely to develop breast cancer than Caucasian women, but are more likely to die of the disease. Breast cancer is the leading cause of cancer deaths among Latinos. Only 38 percent of Hispanic women age 40 and older have regular mammograms.
Most members of racial minorities, the elderly, men, those who live in rural communities, women who are lesbian or bisexual, and the poor or disabled have significantly less chances of surviving the disease than their Caucasian female counterparts.
In addition to its emphasis on care and research disparities, the report also revealed that Komen is working to develop uniform standards for preserving tissue samples.
While most large national cancer centers save tissue samples for up to 20 years, community hospitals only are required to keep them for two years. That translates into a difference of care for women treated at those hospitals that often have low incomes and are part of minority groups.
"They can't benefit if new treatments come available if their original tissue samples can't be retested," Geoghegan said.
Komen will issue a report on the proposed uniform tissue banking standards early next year.
High prices of the most advanced diagnostic tools also can be a barrier for all patients. Mammography may not work as well in women with dense breasts.
Although digital mammography can help find tumors in those women, the more expensive test often is not covered by insurance. Magnetic resonance imaging, which can help in both screening and diagnosis, is even more expensive.
Regarding research, those same minorities are left out of cancer trials. "Ethnic and racial minorities make up less than 10 percent of participants in cancer clinical trials," according to the report.
"In addition, people 65 or older make up less than one-third of clinical trial enrollees, even though nearly two-thirds of cancer patients are in this age group. Without greater participation of all groups in clinical trials and other types of studies, researchers can't answer basic research questions," the report noted.
Some of those research questions include:
• Why are some forms of breast cancer more common in some ethnic and racial groups than in the general population?
• Why do African American women tend to have more aggressive forms of breast cancer and die more often from the disease than Caucasian women?
• Do African American and other ethnic minorities respond to breast cancer therapies in the same way Caucasian women do?
• Do patients 65 and older respond to breast cancer therapies as well as younger patients?
A lack of data sharing among researchers also is at issue.
"Researchers need to be able to build on one another's research so they don't have to reinvent the wheel with each study," Komen report authors wrote.
"Thus, the free exchange of results [data sharing] is an important part of speeding up the pace of breast cancer research and discovery for everyone. The realities of scientific research often stand in the way of data sharing. For example, negative studies are less likely to be published than positive studies," they noted. "In addition, some research sponsored by pharmaceutical companies may be kept under wraps. To get new treatments from the lab bench to the bedside more quickly, we need to improve data sharing and make breast cancer research more of a team effort."
In an effort to eliminate some of the disparities in minority participation in clinical trials, the Department of Health and Human Services in May introduced two programs: Culturally and Linguistically Appropriate Standards and Clinical Trials (CLAS-ACT) and BackPack are intended to develop national standards for culturally and language-appropriate resources for the clinical trials process.
Resources and guidelines will be developed to help scientists and health professionals recruit minority patients into new clinical trials and address attitudes related to mistrust of the health care system.
The projects will be part of a four-year initiative, Eliminating Disparities in Clinical Trials (EDICT), which is being conducted jointly by the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine and the Intercultural Cancer Council, both in Houston, an organization that seeks to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations.
"From existing data, we know that racial and ethnic minorities, the elderly, those who live in rural areas and the poor represent the smallest percentage of clinical trial participants," said John Ruffin, PhD, director of the National Center for Minority Health and Health Disparities.
"Eliminating health disparities in clinical trial design and accrual is therefore a critical goal, which is why these new projects are so significant," he added.