It’s a matter of fairness: members of all ethnic groups should have the opportunity to participate in clinical trials. And it’s a matter of soundness, too: medical advancements must be tested in as many different people with as many different genetic makeups as possible.
Federally-funded research requires the inclusion of minorities and women but many barriers, including a lack of information and access, tend to prevent minorities and poor women from participating in breast cancer trials.
To figure out how to remedy the problem, the University of California, San Francisco (UCSF) is teaming with Shanti Project, Inc., a community-based organization in San Francisco that provides assistance and emotional support to underserved women with breast cancer and people diagnosed with HIV/AIDS. The study begins in November.
“We want to provide underserved women with breast cancer the same opportunities as other women to learn about clinical trials and to participate if they wish,’’ said Galen Joseph, PhD, UCSF principal investigator of the study funded by the California Breast Cancer Research Program.
Shanti breast cancer “navigators’’ will work closely with the researchers to develop appropriate education materials and test them out with Shanti clients. The researchers hope to bring the project to other communities around the country.
“We want to provide underserved women with breast cancer the same opportunities as other women to learn about clinical trials...’’
Galen Joseph, PhD
“The point of this project is to level the playing field through education,’’ said Maria Caprio, co-principal investigator for Shanti. “Our clients will be educated about their options and ultimately expect more from the research community in terms of access to cutting-edge technologies.’’
The 18-month project includes the participation of BreastCancerTrials.org, a nonprofit service that connects women to breast cancer trials. The nation’s only trial matching program dedicated to breast cancer, BreastCancerTrials.org was developed at UCSF and three years later features more than 500 trials throughout the country.
Fewer than 5 percent of all potentially eligible people participate in clinical trials largely because of a misperception that trials are a “last resort,’’ researchers say. In fact, clinical trials are available for people at all stages of diseases, including trials geared toward people at high risk of breast cancer, as well as those who have survived the disease for many years.
“We’re very excited to be working with UCSF and Shanti to integrate BreastCancerTrials.org within the project,’’ said Elly Cohen, PhD, director of the clinical matching program who is herself a breast cancer survivor. “By shifting clinical trial education and access to the community setting, we hope to overcome barriers that have long prevented minority women with breast cancer from considering trials as an option for care.’’