Clinical trials are key to learning about conditions like cancer and finding new treatments. These trials, which happen after years of research, are a chance to try out promising new therapies in people.
Current treatments for breast cancer were once tested in clinical trials.
Many women have benefited from being a part of a clinical trial. Lives have been improved, prolonged, and saved as a result of clinical trials.
But People of Color often face barriers in accessing healthcare. They also have lower rates of participation in clinical trials.
Black people are very underrepresented in clinical trials, especially cancer trials. Yet Black people in the United States have higher rates of several types of cancer. They also have higher death rates from cancer. One reason for this could be related to low participation in clinical trials.
There are several factors that contribute to a lack of diversity in clinical trials.
Things need to change on many levels to increase diversity in clinical trials. There are many barriers that make it harder for Black women to be part of clinical trials for breast cancer.
While many new oral anticancer medications have been approved in the past decade, there are many problems with a lack of diversity in the trials.
Clinical trials often don’t represent the populations that could benefit most from the results.
People of Color are significantly underrepresented in clinical trials — only 9%Trusted Source of all clinical trial participants in 2019 were Black. When we look at cancer clinical trials, the number of Black people is even lower.
According to the 2021 U.S. Census, Black people make up 13.6% of the population. Black people in the United States have higher rates of many types of cancer compared to white people.
- Rates of prostate and colon cancer and death rates are higherTrusted Source in Black people than in white people.
- More white women are diagnosed with breast cancer, but more Black women die from it.
- In the United States, Black women are twice as likelyTrusted Source to be diagnosed with triple-negative breast cancer (TNBC) compared to non-Hispanic white women.
After a diagnosis, cancer cells are tested to find out more about the type of cancer. They are tested for estrogen and progesterone receptors and a protein called HER2. If the cells are negative for estrogen, progesterone, and HER2, the cancer is considered TNBC.
TNBC is often diagnosed at later stages when there are fewer treatment options. Clinical trials may offer access to treatments that are otherwise not available.
To be part of a clinical trial, a person needs to know about it first. This sounds obvious, but many women with breast cancer don’t even know about their clinical trial options.
One reason for this is that some doctors are more aware of clinical trials than others. If you’re already exhausted from dealing with cancer, you may be less likely to look into clinical trials on your own. Having a healthcare professional tell you about a trial could make you more likely to consider it.
Location matters. Clinical trials are typically run out of large cancer centers. Often, they are based at hospitals that are associated with a university. In the United States, Black people are less likelyTrusted Source to get care from these types of centers.
Smaller sites often don’t have the capacity to run a clinical trial. Traveling to another city to be part of a clinical trial can be a barrier due to the expense and time spent.
The overall costs of being part of a clinical trial can be a huge barrier for many people. Although the actual treatment is usually covered, there are many other expenses — including travel, parking, time off work, and child care. This prevents many people, especially those with a lower income, from taking part in clinical trials.
The American Cancer Society’s 2022 Cancer Facts and Figures reportTrusted Source shows that 20% of Black people are living below the poverty line. Among U.S. white and Asian people, 8% live below the poverty line. So lower income may be a bigger barrier for many People of Color.
Exclusion criteria can also prevent Black women from joining breast cancer clinical trials. Exclusion criteria are important for well-designed trials. Criteria may include age, type and stage of cancer, and other health conditions. But sometimes the exclusion criteria are very strict. This can block people who could benefit from being in a trial.
Some examples of exclusion criteria are unmanaged high blood pressure or diabetes. Rates of high blood pressure and diabetes are higher in Black people than white people in the United States so this could exclude them.
There are also higher levelsTrusted Source of medical mistrust among Black people than in white people. Medical mistrust prevents participation in clinical trials. It’s also associated with fewer healthcare visits and lower levels of well-being.
Furthermore, clinical trials have a specific number of spots available, which can limit the number of people involved.
The more diverse the population in the study, the more meaningful the results will be.
There may be genetic differences seen in people from different backgrounds. This gives researchers more information on how a treatment may work in different populations.
Clinical trials are not just for people without other treatment options. Being in a trial can benefit the person and also increase knowledge to help others. There are clinical trials for all stages and types of cancer.
The treatments in clinical trials can extend lives and improve quality of life. Everyone deserves equal access to clinical trials.
Many things need to change to improve diversity in breast cancer clinical trials.
It starts with better communication between People of Color and healthcare professionals. Healthcare workers need to understand the trauma of racism and how it continues to impact care.
Patients can’t join a clinical trial if they don’t even know about them. If you’re interested in joining a clinical trial, don’t wait for your doctor to ask. Not all doctors will be up to date about current trials, or they may not think to let you know. If your doctor doesn’t mention any clinical trials, you can ask.
You can also look into options on your own by reviewing some of the sites under the Resources section below.
Support groups are another place to find out about clinical trials and ask questions. It’s nice to be able to talk it over with others who may already be in a trial or considering it. Ask questions until you feel more comfortable and confident with your decision.
Since travel to larger centers can be a barrier for many, offering satellite clinics would help.
There are some supports available to help patients with other costs of being part of a clinical trial. Many clinical trials have a social worker or patient navigator as part of the team. These people can help you find ways to cover extra costs.
Trial investigators also need to consider if their exclusion criteria really make sense. Too often, they prevent people from joining who could benefit from being part of the trial.
Every clinical trial works a little differently. Here are the typical steps involved:
- The first thing is to find out what trials are available to you. You can talk with your healthcare team or check out some of the resources listed below.
- Once you find a trial that you may be a match for, you’ll have to apply for it. This process makes sure that you’re a good candidate for the clinical trial. These are services available to assist with the application process as well. The application usually involvesTrusted Source:
- submitting a copy of your medical records
- having blood work done
- reviewing details of the clinical trial and signing consent forms
- The person who oversees the clinical trial is called a principal investigator. Once your application is reviewed, you’ll find out if you qualify for the trial.
The principal investigator can also answer any questions you have about the trial.
Some questions to consider asking include:
- What is the purpose of this clinical trial?
- What are the possible benefits for me?
- What are the possible risks to me?
- How long does the trial run?
- How often do I need to come in for appointments and how long are the appointments?
- Can any appointments be done virtually (if travel and time away are concerns for you)?
- Are there costs that are not covered by health insurance?
- Are there any supports to help cover extra costs?
There are many things to consider if you’re interested in a clinical trial. Here are some resources to check out for more information:
- American Cancer Society. Their informationTrusted Source on clinical trials includes the process, what to know, and questions to ask.
- National Cancer Institute (NCI). The NCITrusted Source details how clinical trials work, answers questions about safety, and has tips for dealing with costs. There is also an online searchTrusted Source to look up clinical trials, or you can call 800-422-6237 to talk with someone about trial options.
- Hope Lodge. There are more than 30 Hope LodgesTrusted Source throughout the United States and in Puerto Rico run by the American Cancer Society. They provide people with a free place to stay when traveling for cancer treatments.
- Lazarex Cancer Foundation. This foundation works hard to improve access to clinical trials. They help patients with finding clinical trials and help cover the costs of being part of a trial.
- BreastCancerTrials.org. This organization lists clinical trials specifically for breast cancer. There are also many personal stories and guidance on making the right decisions for you.
You can also look locally:
- Ask your cancer care team. If your doctor doesn’t ask you about joining a clinical trial, you can ask.
- Connect with your local cancer support center. There may be a cancer support group or center in your area. This is a great place to ask about current clinical trials that you may qualify for.
Black women are underrepresented in breast cancer clinical trials. While there are higher overall rates of breast cancer in white women, Black women have greater mortality rates from breast cancer. Part of this may be because fewer Black women are involved in clinical trials.
Clinical trials can improve and extend lives and increase knowledge about breast cancer.
People of Color face several roadblocks to joining a clinical trial. Medical mistrust and strict exclusion criteria can be barriers. There are also issues like access, travel, and extra costs that make it harder for Black women to join trials.
We all benefit from clinical trials that are more inclusive and actually represent the population. Change is needed at all levels to increase diversity in breast cancer clinical trials.
Last medically reviewed on August 2, 2022
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