Addressing Racial Equity in Healthcare
- Comedian Cedric the Entertainer, 59, lost his mom to uterine cancer in 2015 after a nearly six-year cancer battle. Since then, Cedric has advocated for more Black participation in clinical trials to help find more effective treatments for diverse populations.
- Clinical trials help doctors discover more effective treatment methods. They also allow patients to try a treatment before it’s approved by the U.S. Food and Drug Administration (FDA), which can potentially be life-changing.
- Black Americans are under-represented in clinical trials. While caucasians make up the majority of clinical trial participants, Black Americans account for roughly five percent. Overcoming general distrust within healthcare and improved outreach efforts are suggested ways to boost clinical trial participation among communities of color.
- To help find a clinical trial, try our easy-to-use Clinical Trial Finder.
The American Society of Clinical Oncology (ASCO) says Black Americans are “under-represented in cancer clinical trials,” which can limit our understanding of therapeutic response to Black populations. Black patients account for only 5% of participants in clinical trials in the U.S., according to research published in JAMA Network Open.
Read More
“Participation in cancer clinical trials is extremely low in the Black community,” Cedric the Entertainer, whose real name is Cedric Kyles, stated in a Stand Up to Cancer press release. Kyles’ mother, Rosetta Boyce Kyles, was diagnosed with uterine cancer in 2009. The most common type of uterine cancer is endometrial cancer.According to the National Cancer Institute, endometrial cancer begins when cancerous cells form in the tissues of the endometrium or uterus lining.
After a woman has been diagnosed with endometrial cancer, her doctor will stage the cancer based on its spread within the body. A pelvic exam and imaging tests help your doctor learn if the cancer has spread or metastasized.
WATCH: Understanding endometrial cancer.
Some common risk factors for endometrial cancer include:
- Obesity
- Taking estrogen-only hormone replacement therapy after menopause
- Having never given birth or started menstruation at an early age
- Having a family history of endometrial cancer
Rosetta Kyles passed away from the disease in 2015. Cedric and his sister supported their mom during her cancer journey until the end.
“My sister and I would have our own meetings with the doctors to look at all the treatments and get a clear understanding,” Cedric said.
Issues such as limited participation in clinical trials from the Black community draw added attention to racial disparities in healthcare and the need to Close the Gap regarding access to cancer care.
Leveling the Field In Cancer Care
- ‘Significant Improvement’ Needed: Leading Cancer Groups Address the Extraordinary Racial Disparities in Outcomes for Cancer Patients
- Close the Gap: Racial Disparities in Cancer Care Are Devastating– Let’s Change Things
- Cancer Trials Need More Black Participants; Here’s How We Can Close the Gap on Racial Disparities in Cancer Care
- How Can Medical Practitioners Reduce Racial Disparities In Multiple Myeloma? Leading Experts Offer Solutions for SurvivorNet Connect
- How to Address Racial Disparities in Cancer Care
- New Discovery Explains Some Racial Disparities in Colon Cancer
Why do Black and Other Communities of Color Participate in Clinical Trials Less?
Pew Research surveyed diverse Americans in 2021 on their views of clinical trials. It found that 59% of Black Americans and 58% of Hispanic/Latin American adults considered clinical trials “very important.” Black and Hispanic participants claimed a desire to help others was among the leading reasons to support clinical trials. However, they also worried about potential health risks that clinical trials presented, most notably using treatments that the U.S. Food and Drug Administration had not yet approved. There also existed a contingent of people expressing great skepticism of clinical trials by citing historical racial mistreatment of Black and brown people, such as the Tuskegee Syphilis Study.
“Minority participation in clinical trials is necessary to create equality and eliminate disparities in the field,” researchers Dr. Karen Allison, a clinical instructor of ophthalmology at Mount Sinai Hospital, Deepkumar Patel at New York Medical College, and Ramandeep Kaur at New York Medical College, School of Health Science and Practice, said in their study published in Cureus.
Some health practitioners identified ways to improve Black participation in clinical trials. Some recommendations by the Association of American Medical Colleges (AAMC) include going into communities where mostly Black people live for recruitment.
Another method to help address the lack of trust among some Black community members in the healthcare industry is to acquire knowledgeable Black and brown people to do the outreach who can better communicate effectively with the community they are trying to reach.
When to Consider a Clinical Trial
In the U.S., all new drugs must go through clinical trials before the FDA approves them. Although the rewards of clinical trials can be great, they also come with risks. Talking to your doctor about this before enrolling in a trial is important. Some risks to consider include:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects of experimental treatments
- The treatment may not work for you, even if it has worked for others
Dr. Beth Karlan, a gynecologic oncologist at UCLA Health, explained to SurvivorNet in a previous interview that clinical trials aim to advance cancer research to the point where the disease becomes manageable, akin to diabetes.
“Clinical trials hopefully can benefit you, but is also providing very, very vital information to the whole scientific community about the effectiveness of these treatments,” Dr. Karlan said.
“They can be life-saving. We’ve seen many in the last few years of children and adults who have participated in trials and have had miraculous results,” Dr. Karlan continued.
WATCH: Clinical trials can be life-saving.
Before you enroll in a trial, it’s important to read the consent documents thoroughly and to ask any questions you may have. The documents will likely contain the following:
- The purpose of the research
- Any risks and benefits expected from the research
- Information about procedures that may cause discomfort (like frequent blood tests)
- Any alternative procedures the patient might consider instead
- How the patient’s information will be kept private
- How long the study is expected to take
- A form confirming you are participating in research voluntarily
- Whether any compensation or additional medical care is available if some injury occurs
- The patient’s rights (like the right to stop research in the middle of the trial)
- Contacts for any patient questions
Patients are allowed to walk away at any time during the trial. Understanding your rights as a voluntary patient is important before you participate in a clinical trial, and understanding that the treatment may not work is also crucial.
Do Clinical Trials Cost Participants Anything?
Clinical trials may also be free for participants, as the study’s sponsor may pay for the treatment and any additional care. Some sponsors even pay for travel to and from appointments or treatment centers. Patients should ask what will be paid before participating in a trial.
The Affordable Care Act also mandates that health insurance companies cover routine patient care costs while people are enrolled in clinical trials.
The ‘Placebo’
During the treatment of an experimental drug in a clinical trial, while some participants receive the real thing, others do not. These participants receive a placebo.
The National Cancer Institute defines the placebo as “an inactive substance or other intervention that looks the same and is given the same way as an active drug or treatment being tested. The effects of the active drug or other intervention are compared to the effects of the placebo.”
In some cancer clinical trials that are “randomized,” patients who enroll are randomly assigned to receive either a placebo or the new experimental drug being studied. If the clinical trial is “double-blinded,” that means that neither the patients nor the doctors running the clinical trials know who’s in which group. This is an important part of a clinical trial design because it safeguards against bias and the possibility of skewed results.
It’s important to know that getting zero treatment isn’t usually the reality of the “placebo arm” anyway.
Instead, when patients with life-threatening cancers enroll in randomized clinical trials, the two groups are often broken into the new, experimental drug and a “control” group that receives the “standard-of-care” treatment.
Treatments considered standard of care are those that experts accept as the go-to treatment for specific cancers. Standard-of-care, in other words, is the most used treatment.
In many cases, it might involve a combination of chemotherapy, surgery, or radiation, but not always.
How to Find a Clinical Trial
If you want to participate in a clinical trial, your first step should be to talk with your doctor. They can address many of your initial questions and help you determine if you would make a good participant.
Another crucial part of clinical trials is finding the right one for you. SurvirorNet has a resource called the Clinical Trial Finder to help with this.
Learn more about SurvivorNet's rigorous medical review process.
