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Why Are Minorities Often Underrepresented in Clinical Trials?

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Published on February 27, 2019

How does diversity in clinical trials impact the development of new medicines? How can researchers tell if therapies will work for patients of different racial or ethnic backgrounds? During this Clinical Trial MythBusters segment, clinical trial expert Dr. Richard L. Schilsky, from the America Society of Clinical Oncology, tackles the issue of underrepresentation and explains what factors lead to a lack of diversity in clinical trials. Cecilia Mann, care partner and community outreach volunteer at The Leukemia & Lymphoma Society (LLS), also shares resources to help make trials more accessible. 

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Astellas, Celgene Corporation, and Novartis for their support.

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Transcript | Why Are Minorities Often Underrepresented in Clinical Trials?

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

We need to change that for a whole host of reasons.  It's historically been very challenging, and the problems really sort of boil down into three big areas that I think we can discuss a little bit further. 

First is awareness.  Many people are not aware that clinical trials are even an option for them.  Many people think that a clinical trial is a last resort, and I want to dispel that myth right out of the box.  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.  So clinical trials may be a last resort, but they don't have to be, and there are many clinical trials that are appropriate for people right following the initial diagnosis of their cancer. 

So there's the awareness issue, and sometimes, frankly, not even the doctors are aware of what clinical trial options are for their patients.  And 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. 

But then you get into the more technical issues.  There are things, there are rules for clinical trials because they are research studies.  They are experiments.  There are very well defined rules, most of which are in place to protect the people who are participating in the study.  Some of these rules are called eligibility criteria, and they specify the characteristics of people who can enroll in the study.  Well, historically, they tend to be very rigid and very limiting, and you'll often hear people talk about how the only people who can get into clinical trials are Olympic athletes.  That may be the case, but it's not Olympic athletes that we're treating in the clinic every day, so we need to make our clinical trials more representative so that they're more applicable to the typical person that a doctor sees in their office. 

And then there are the logistical or operational issues of the clinical trial.  The clinical trial can be very burdensome.  Mel just described how he had to travel from his home in Atlanta to Houston to participate in a clinical trial.  Not everybody can afford to do that.  Not everybody can take time away from work, time away from home.  And the clinical trial requires not only that you travel sometimes but that you travel on a specific schedule because of the requirements of the trial. 

So all of these are issues that are—can limit participation in trials, and many of them are magnified in minority populations or in populations that don't have the economic resources to be able to meet the requirements of the trial. 

But you're right, Andrew.  I had one young lady at a health fair and a second cancer had popped up, and she was coming there to get information, and she was saying that they were saying it wasn't too much they could do, and 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.  And so when they listen to me then 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.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.