Disparities and Low Participation in Clinical Trials

Jadmin Mostel

by Jadmin Mostel, Patient Support and Research Assistant, Mesothelioma Applied Research Foundation

This past March, I attended the National Comprehensive Cancer Network (NCCN) annual conference, and observed a dynamic roundtable discussion about disparities in the medical field. As the conversation was first colored with various factors such as socioeconomic background and language barriers, the conversation took a turn to disparities in clinical trials. Why, for instance, is there a geographical disparity about who exactly gets recruited for clinical trials? Does the language you speak impact your ability to participate in a clinical trial? And why does clinical trial participation in children reflect statistics greater than 60%, but in adults, participation is less than 5%?

One issue of clinical trials in mesothelioma is the undue financial burden that the family faces when traveling to participate.  Mesothelioma centers of excellence are limited in number nationally due to the rarity of the disease, often forcing patients and their families to travel great distances to receive treatment. The complication of financial funding adds a layer of disparity to discern between those who can afford the financial burden of clinical trials and those who are struggling to make ends meet.

An issue that often faces clinical trial participation in general is the importance of enrolling a more diverse population demographically. Age and ethnicity, for example, are two characteristics that have gone through considerable change in the mesothelioma community. As more individuals are living longer, and a more diverse set of ethnicities are being diagnosed with mesothelioma, clinical trials need to adapt to include a wider age-range of individuals and those from different ethnic backgrounds. If, for example, a clinical trial did not include a diverse demographic background, the results from the clinical trial may not be applicable to all individuals with a mesothelioma diagnosis looking to engage in that specific line of treatment.

Clinical trials are an instrumental and exceptional research tool. They advance scientific discoveries and knowledge, and can often lead to treatments that show positive results. Disparities in clinical trial participation are simply  not an option; in order to maximize the accuracy of treatment results, and to ensure a wide range of demographics receive adequate treatment, clinical trial enrollment must factor in the recruitment of those that have a disadvantaged participation opportunity.

The Meso Foundation is proud to collaborate with the National Comprehensive Cancer Network. Earlier this year, through partial funding by the Meso Foundation, the NCCN published updated patient resources for malignant pleural mesothelioma, including the NCCN Guidelines for Patients and NCCN Quick Guide sheet.

If you are a patient unable to participate in a clinical trial due to the financial burden of travel expenses, you may be eligible to receive a grant through the Meso Foundation’s Patient Travel Grant Program. Click here to learn more.

1 Comment on "Disparities and Low Participation in Clinical Trials"

  1. I couldn’t agree more, trials need to include individuals from a wide variety of ethnic backgrounds. My husband, Asian background, is the only individual in a 35 person trial that has gruesome, horrific skin problems as side effect from the Keytruda trial he participated in. Is it a coincidence that he is reacting so strongly and the side effects are effecting him more than the Caucasian patients. We can’t tell for sure of course, but I strongly suspect his ethnic background plays a role and he has enhanced sensitivity.

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