Due to stigmas such as being treated as “experimental guinea pigs,” few African-American patients are willing to look at clinical trials as an option for care. Dr. Adam Metwalli, Chief of the Division of Urology, Department of Surgery at Howard University Hospital in Washington, D.C. says that currently less than five percent of cancer patients overall participate in clinical trials, primarily because they lack awareness.
In August, Advancing Cancer Treatment (ACT) launched an effort, which seeks to change this disparaging statistic. ACT is raising awareness among newly-diagnosed African American cancer patients that clinical trials may be the first-line option, and not the last resort.
ACT is a philanthropic initiative that supports patients’ access to the best in modern cancer treatments. With ACT Leadership Awards, the organization recognizes doctors and other medical professionals who help patients access the best treatment options in modern cancer care through their support of clinical trials and their knowledge and effectiveness in serving their patients.
“Clinical trials are helping more patients survive and experience improved quality of life for many types of cancer,” said Dr. Metwalli, a recipient of the ACT Leadership Award. “Most people erroneously believe that clinical trials are only for patients who have exhausted all other remedies, while the truth is that clinical trials may be the best options for patients with new cancer diagnoses.”
Dr. Metwalli recently completed a term as president of GUMDROP, a not-for-profit 501(c)(3) organization formed to enhance patient outcomes through greater cancer clinical trial awareness.
“GUMDROP promotes local academic institutions in their efforts to accrue to clinical trials,” said Dr. Metwalli. “It was our brainchild to get the institutions together and inform one another as to what we were up to. It was a collegial way for us to help one another. One of the goals of GUMDROP is to educate patients about clinical trials, and why they are so important.”
He added, “At Howard University, it’s important because of historical abuses when it comes to African Americans and their disapproval of clinical trials. If they disapprove, they are less likely to participate. There is a pressing need to educate patients about what clinical trials are, why we do clinical trials, and rebuild trust to find the best therapies for patients.”
Clinical trials are research studies that explore whether a medical strategy, treatment or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people.
According to ACT, a significant body of evidence shows that clinical trials can improve the patient experience as well as prolong lives, though patients report being reluctant to enroll without a recommendation from their physician. ACT says patients who enroll in clinical trials have more access to medical treatments than patients who enroll in standard therapies alone.
“We have broken down silos, and the work of GUMDROP has helped,” said Dr. Metwalli. “However, we have a ways to go when it comes to clinical trials in the area of oncology. African-Americans are affected by prostate cancer multifold higher than what we are seeing in Caucasians. Why that exists is why we need to have patients participate in clinical trials and help us to answer the question. Some drugs are more favorable in the African-American community. We need to have more participation to find out why they are responding differently, whether better or worse.”
Cynthia Heath, 56, of Bowie, Maryland, was diagnosed with stage IV colon cancer in 2007 at the age of 45. She was told her cancer was inoperable and was given one year to live. She is currently participating in an Immunotherapy Clinical Trial utilizing Avelumab PDL-1 antibody at the National Institutes for Health (NIH) in Bethesda, Maryland.
“Being African-American and hearing the horror stories about The Tuskegee Experiment, many blacks don’t participate in clinical trials because of the negative connotations,” Heath said. “However, if we are not at the table, we aren’t aware of the new drugs coming out. My fear was overcome by the fact that if I was not at the table, I was not helping the community.”
Heath shared this advice.
“I encourage other cancer patients to trust God,” she said. “He is the reason why I am still here. You also have to be your own health advocate. Ask questions, and seek second and third opinions. Clinical trials are not negative, they are positive. It gives us a seat at the table and puts us in a place to get the best possible care.”
For more information about clinical trials, visit http://www.brownperformance.com/grants/act and gumpdroptrials.org.