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Patient Power: Why Are Minorities Often Underrepresented in Clinical Trials?
Patient Power: Why Are Minorities Often Underrepresented in Clinical Trials? image
Patient Power: Why Are Minorities Often Underrepresented in Clinical Trials?
Posted Mar 28, 2019

Clinical trial expert Dr. Richard L. Schilsky, from the America Society of Clinical Oncology, and Cecilia Mann, care partner and community outreach volunteer at The Leukemia & Lymphoma Society (LLS), joined Andrew Schorr in a recent Clinical Trial MythBusters segment on Patient Power.

Here's the issue: How do we know what we're testing in clinical trials applies to people with different ethnic, gender backgrounds, a variety of situations? Often we can't find people who fit those categories to be in. Andrew Schorr asked Dr. Schilsky, "How poorly have we been doing in the past with diversity in trials, and what does that mean for developing new medicines?" 

"Well, we don't do well in almost any dimension.  We don't get enough underrepresented minorities in clinical trials.  We don't get enough older people in clinical trials.  You have to remember that 60 percent of cancers occur in people 65 years and older, and yet only about 10 percent of people participating in clinical trials are 65 and older.  So we are having to treat the majority of older people, and I would say the majority of minority people, with data derived from participants in clinical trials who are not like them." --Dr. Richard L. Schilsky

There are a host of problems that contribute to this greater dilemma. First, awareness. Many don't even realize that clinical trials are treatment options for them. They think it's a "last resort"--which is a widespread myth. "Clinical trials can be a very good option for patients right from the time of their cancer diagnosis even if it's their very first treatment," Dr. Schilsky mentioned.  

Awareness not only affects patients, but doctors as well. Doctors can also be unaware that clinical trials are options for those they are treating. Dr. Schilsky continued, "...the one thing we know for sure is that the most influential person as to whether or not a patient goes into a clinical trial is their doctor.  If the doctor does not recommend it, if the doctor is not aware of it, it's not going to happen."

Another issue is the rules of eligibility associated with each trial. They can be very limiting in accepting patients, mostly to protect those who participate in the study. People joke about how the only patients who can get into clinical trials are Olympic athletes.  Though that may be true, it's not the Olympic athletes who are being treated in the clinic every day. Clinical trials should be more representative in order to be applicable to the typical person that a doctor sees in their office. 

There are also logistical issues of the clinical trial. It can be very burdensome--whether it be lots of travel, lack of funds, lack of time--it's almost like a full time job.

So, how do we address these issues to increase minority representation in clinical trials?

Cecilia gets this question a lot in her volunteering with the LLS: "The Leukemia & Lymphoma Society, they have resources to help with travel, and American Cancer Society has resources that help with the hotel and lodging.  And there are a number of other different types of funds that can be assessed to make that a possibility.

...I had one young lady at a health fair [come up to me] and a second cancer had popped up...and she was saying that they were saying it wasn't too much they [the doctors] could do...I brought up MD Anderson.  And she immediately said, 'I can't go out there, I have to go to work,' and she turned around rough...[I'm] always glad to tell them about it and let them know there is an option and that clinical trials work, and I point to Mel, my husband, as a success story also."

The answer is clear--there needs to be more clinical trial participation. Especially from those who are underrepresented. If you have questions about clinical trials specific for myeloma, visit SparkCures.com. With HealthTree, which partners with SparkCures, you can even be matched automatically with personalized clinical trials. It's time to get the right treatment to the right patient at the right time. 

Watch the full video here.

The author Erika Johnson

about the author
Erika Johnson

Myeloma Crowd Editorial Contributor, Nursing student, and cancer advocate.

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