FROM STAFF REPORTS
For AverL Anderson, seeing more African-Americans participate in clinical trials is personal. The 60-year-old breast cancer survivor said if it had not been for a clinical trial, she might not be alive today.
Anderson was one of the speakers at a Wednesday press conference in Washington, D.C. announcing a new initiative aimed to get more Blacks, Hispanics and Asian-Americans involved in clinical trials.
The Pharmaceutical Research and Manufacturers of America (PhRMA) and the National Minority Quality Forum have collaborated to launch the ‘I’m In’ campaign designed to encourage greater diversity of patients who volunteer to participate in clinical trials.
PhRMA represents the country’s leading biopharmaceutical research and biotechnology companies, while the D.C.-based Forum is a not-for-profit independent research and education organization.
Anderson, a former health care worker, was diagnosed with breast cancer in 2009. At the
time, she was a volunteer with the Buffalo/Niagara Witness Project, an initiative of Roswell Park Cancer Institute in New York that educates participants on early cancer detection through stories told by breast and cervical cancer survivors in churches and community setting.
“I didn’t just have any breast cancer. I had Stage 3 triple negative breast cancer, a very aggressive form of breast cancer in African-American women,” Anderson shared.
Shortly after her diagnosis, Anderson’s oncologist recommended she be enrolled in a federally funded clinical trial.
“I understand the misconceptions and also the Tuskegee experiment where people have a lot of mistrust of medical research. Even in my family, I heard my grandparents talk about those incidents, but I feel if it were not for other 55 year-old African-American women who participated in a clinical trial, I might not be standing here talking to you today.’’
“I thank God that today’s cures were yesterday’s clinical trials and today’s clinical studies are tomorrow’s cures,’’ she remarked.
Legacy of mistrust
Historically, Blacks’ mistrust of clinical research dates back to the use of Black cadavers for experimentation and the infamous Tuskegee Syphilis study, in which White doctors conducted experiments on Black men in Alabama to see how syphilis spreads.
The patients weren’t told they had syphilis and weren’t treated for it.
According to the Food and Drug Administration (FDA), African-Americans represent 12 percent of the U.S. population, but only 5 percent of clinical trial participants. Hispanics make up 16 percent of the population, but only 1 percent of clinical trial participants.
In a statement released prior to the conference, John Castellani, president and CEO of PhRMA, commented, “PhRMA and our member companies are committed to raising awareness and increasing participation in clinical trials, particularly among historically underrepresented populations. Through this collaboration of health care leaders, we are taking a major step forward to help reduce health disparities through greater inclusiveness in clinical research.”
At the conference on Wednesday, experts noted how developing new medicines is a lengthy and complex process that relies heavily on volunteer participation to evaluate potential therapies for safety and effectiveness in clinical studies.
“According to the FDA, increased diversity in clinical trials could help researchers find better ways to fight diseases that disproportionately impact certain populations, and may be important for the safe and effective use of new therapies,” Dr. Gary Puckrein, president and CEO of the National Minority Quality Forum, said in a statement.
“Through the I’m In campaign, new online resources such as the Clinical Trial Engagement Network will be introduced to empower individuals to learn more about clinical trials and the benefits of participating in clinical research,” he added.
I’m In will support the buildup of the National Minority Quality Forum’s Clinical Trial Engagement Network, which will help accelerate the inclusion of underrepresented populations in clinical trials.
Authorized users will be able to quickly identify potential clinical trial participants by using zip-code level mapping of disease clusters and simultaneously identifying and connecting points of care and community resources that can assist with site selection and patient recruitment.
Others participating in Wednesday’s conference included Dr. Carlos J. Cardenas of Doctors Hospital in McAllen, Texas and Dr. Ho Tran of the National Council of Asian Pacific Islander Physicians. Both expressed the importance of minorities in the trials.
Anderson, who celebrated five years as a breast cancer survivor on Feb. 22, reiterated the importance of African-Americans being involved in clinical trials. She shared the joy of being able to see her grandchildren graduate from high school and to see them possibly get married.
“We have to do this for ourselves, our children, our grandchildren and our community,’’ she added.
For more information about clinical trials and the I’m In campaign, visit www.JoinImIn.org.