In Louisiana, there are more cancer cases compared to the rest of the US when adjusted for population. This discrepancy becomes even more promine6t when comparing Black Louisianians to Black Americans in the rest of the country. 

What’s more, in the past 5 years, as national cancer rates among Black Americans have gone down, the rates among Black Louisianans have gone up. 

In a state that is almost one-third Black, addressing cancer among one of the most affected populations must be prioritized. An essential tool cancer researchers have for addressing cancer disparities is clinical trials. 

According to Dr. Augusto Ochoa, Deputy Director of the LSU LCMC Health Cancer Center and Chair, clinical trials provide Black Americans with potentially lifesaving treatments. “Black individuals have a higher incidence and mortality from many cancers. Therefore, they need access to the latest cutting-edge studies to help prevent, diagnose early, and treat cancer,” he says. 

Black American participation in clinical trials is also critical to ensuring cancer treatments are safe and effective for all populations. “Treatments tested in one racial group may not work as well in others,” explains Dr. Ochoa. “The FDA has mandated that clinical trials need to be tested in a variety of racial groups reflecting the composition of the citizens of the US.”

Despite this, the rate of clinical trial enrollment among Black Americans is far less than their representation in the US population.

In 2020, Black Americans made up more than 13% of the US population. But in US oncology trials from 2015 to 2019:

• Less than 5% of participants were Black men
• Only 2% of participants were Black women

This problem becomes even more apparent in cancers that disproportionately affect Black Americans. For instance, every year Black Americans make up about 22% of cases of multiple myeloma (MM), a blood cancer that develops in the bone marrow’s plasma cells. However, in trials designed to study MM, Black people make up less than 5% of participants. 

To improve Black American enrollment in clinical trials, it’s important to understand the barriers Black Americans face. It’s also crucial to recognize how clinical trials can address the disparities that impact this population, especially in Louisiana.  

Barrier 1: Medical Mistrust

A primary barrier to clinical trials is a long-standing history of medical mistrust, as many Black Americans fear being treated unequally while using an experimental drug.

These fears are founded in historical cases such as the US Public Health Service Syphilis Study at Tuskegee, where 600 Black men were enrolled in a study in which there was no informed consent from participants and researchers did not offer treatment, even though it was readily available. What’s more, they thought they were being treated for what was referred to as “bad blood,” which involves a range of conditions like anemia, fatigue, and syphilis. 

Concerns are reinforced by structural racism within the healthcare system and racial discrimination in everyday life. 

Barrier 2: Access to Care

Access to healthcare may also prevent patients from enrolling in clinical trials. According to Dr. Ochoa, this includes structural elements. “The clinical practice offering clinical trials is too far from the patient’s home, or the patient does not have transportation to get to the clinic,” he says. 

Clinical trials are often hosted at major academic cancer centers — some of which require travel that is unrealistic, time-consuming, and expensive. “The patient may not have enough financial resources to access the clinic repeatedly for the clinical trial,” explains Dr. Ochoa. 

These barriers can also lead to lower screening rates among Black Americans and, therefore, later cancer diagnoses. A more advanced cancer diagnosis may keep patients from being eligible to participate in trials. 

Barrier 3: Awareness and Education

Awareness and understanding of clinical trials is another obstacle. Clinical trials were once seen as a final effort to treat cancer with no other hope. Now, clinical trials are a part of many patients' standard care plans, offering access to groundbreaking and life-saving treatments. 

“Until maybe a decade ago, we all considered clinical trials in cancer as a last resort attempt for a patient who had already failed standard of care,” explains Dr. Ochoa. “Having access to a clinical trial has changed from being a last-ditch effort to being a normal and required step in the treatment of a cancer patient,” he says. 

Barrier 4: Co-morbidities and Biologic Factors

The design of clinical trials may also exclude Black Americans from participation. Reasons for exclusion range from co-existing health conditions to biologic factors, such as testosterone levels, which are higher in Black people.

“Our experience is that most patients, if offered the opportunity to participate in a clinical trial, are eager to do so,” says Dr. Ochoa. “However, many trials have strict enrollment criteria that prevent patients with comorbidities from participating. The NCI is making a concerted effort to widen the ‘inclusion criteria’ in clinical trials.” 

Reducing Barriers to Clinical Trial Enrollment 

Increasing clinical trial enrollment among Black Americans starts nationwide. “The federal government has made it clear that they want all racial and social groups to have equal access to cutting-edge developments in cancer, which are first made available through clinical trials,” explains Dr. Ochoa. 

“In an effort to create equity in the access to clinical studies, the National Cancer Institute (NCI) has created special programs, such as the NCI Community Oncology Research Program (NCORP), to offer access to clinical trials to patients throughout the US,” he says. 

Locally, LSU LCMC Health Cancer Center is uniquely situated in a geographical location with a high rate of Black patients. With a wide range of clinical trials available close to home, Black Louisianians can access life-saving treatment from a health system they trust. 

LSU LCMC Health Cancer Center clinical trials are available through the NCI-funded program called the Gulf South Clinical Trials Network (Gulf South CTN). “Our NCORP is a minority/underserved NCORP, which means we are committed to ensuring that at least 30% of patients enrolled in our studies represent minorities in our state — African Americans, Hispanics, and Asians,” says Dr. Ochoa. “In fact, the Gulf South CTN enrolls between 40-55% minority patients in the clinical trials offered.”

Technology may be another way to combat obstacles. “At the Gulf South CTN, we are working on ways, including virtual technologies, to provide support and experienced personnel that can facilitate the implementation of clinical trials in smaller community clinics where doctors and patients are interested in participating in clinical studies,” says Dr. Ochoa. 

On a national scale, the US healthcare system must rebuild trust for Black Americans — something that takes time and a concerted effort. While much more work needs to be done, the process of rebuilding trust is already underway, and more than half of Black Americans see clinical trials as an important part of the process of developing new treatments. Through education, outreach, and engagement, cancer centers can continue to build relationships that instill confidence in clinical trials and promote enrollment.

Clinical Trials: The Best Tool to Address Cancer Disparities in Louisiana 

Addressing the barriers to Black American participation in clinical trials is crucial to ensuring new cancer treatments are safe and effective for all populations. It also provides access to potentially life-saving treatments in a population disproportionately affected by cancer. 

The LSU LCMC Health Cancer Center is committed to enrolling more Black patients in clinical trials. This is not a one-time goal, but rather an ongoing endeavor that reflects our dedication to improving the lives of all patients in Louisiana.