We can credit clinical trials for great improvements made in cancer care in recent years. Death rates for 11 of the 19 most common cancers in men and 14 of the 20 most common cancers in women decreased between 2014 and 2018.
But there’s a large hole in these improvements: a lack of diversity.
A 2020 report from the American Association of Cancer Research demonstrated that African-American men have a 111% higher risk of dying from prostate cancer, while African-American women have a 39% higher risk of dying from breast cancer. In addition, African-Americans have the highest overall death rate from cancer over the past four decades.
While African-Americans constitute 13.4% of the population, they represented only 11% of patients accrued to National Cancer Institute clinical trials in 2019. Similarly, the accrual rate for Hispanics was 10%, despite representing 18.5% of the U.S. population.
This must change. And when it does, thousands of lives could potentially be saved annually.
In cancer—and all clinical trials—ethnic diversity is genetic diversity, and unless we successfully enroll people from all ethnic and racial origins, our advancements will fail to be inclusive.
Cancer treatments are more often focused on genetic profiling because cancer is not a traditional disease. The routine treatment of surgery, chemotherapy and radiation could work for some and not others, based largely on genetic factors.
That’s why treatment options are most effective when we tailor them to the genetic profile of a patient’s particular tumor as well as their genetic background. The research and medical community need to be able to offer treatment options that make the most of that valuable information.
How do we move forward?
To start, we must regain the trust of people who historically have regarded the healthcare industry with suspicion. For example, African-Americans have long been wary of participating in clinical trials. There have been documented abuses throughout our nation’s history. African-Americans have also often had less access to healthcare in general.
And our challenge goes beyond the African-American population.
Other ethnic groups are also underrepresented in clinical trials. In some cases, it’s also a lack of trust. In many others, it’s because there aren’t enough people from that background available to us. That’s where health systems in the most diverse areas of the country must step up.
The unique opportunity that my colleagues and I at Northwell Health have is that the region we serve is as richly diverse as any area of the U.S. For example, the borough of Queens is one of the most ethnically diverse counties in the world. Oncologists treat cancers unique to specific populations, like ones caused by genetic mutations prevalent in the Asian community. Our health system treats more New Yorkers who have cancer than any other provider—about 19,000 new patients each year.
Our cancer institute also participates in more than 200 active clinical trials, and we have focused greatly on enrolling a diverse group of patients that properly represents the population of this region. We are seeing some positive results. Even as COVID-19 disrupted so much research in 2020, we were able to enroll 52 cancer patients in interventional treatment, 31% of whom were from underrepresented communities.
The pandemic has forced us in healthcare to rethink—and for the better—how to roll out trials throughout every discipline. For example, my colleagues at the Feinstein Institutes rolled out the health system’s first fully virtual outpatient clinical trial looking at the safety and efficacy of famotidine, the generic name for the common heartburn drug Pepcid AC, to treat mild to moderate COVID patients at home. Being able to take a trial out of a hospital setting increased diversity and delivered potentially life-changing treatments, all thanks to FedEx and an iPad. These types of trials can be done in other health systems around the world.
To properly treat a diverse patient population—and entice them to join clinical trials—health systems in increasingly diverse cities must employ staffers who speak languages such as Spanish, Chinese, Korean, Russian, Hindi and Bengali. Next, it’s key to translate clinical trial information into these, and other languages. This will make all the difference in communication. While most trials are translated into Spanish, residents who speak other languages might be left unaware of clinical trial options.
There’s also the challenge of having diverse communities trust clinical trials. We can better gain that trust by using doctors who have the same background as patients.
By engaging with our community partners, we can work to educate racial and ethnic minorities about the benefits of cancer clinical trials. We hope these enhancements will open communication and shed light on clinical trial options for patients who would otherwise be left in the dark about cutting-edge treatments.