Clinical trials are one of the key factors to accelerating myeloma research and getting us closer to the cure we all desire. Thanks to clinical trials, effective medicines are tested, approved, and then distributed to the general patient community through the academic center or oncology settings. However, in the United States we have a low percentage of patients participating in clinical trials, and an even smaller population of BIPOC patients participating in them. This consequently leads to less accurate data due to genomics differences between myeloma based on race.
Though the reasons keeping patients from clinical trials are complex and multi-dimensional, there are common misconceptions that we recognize across the board and would like to clarify through this article today.
Dr. Craig Cole, a myeloma specialist at Michigan State, joined the African American Chapter of the Myeloma Crowd Community Program to share these common misconceptions and how you can reframe your thinking around clinical trials starting today.
The FDA (Federal Drug Administration) or IRB (Institutional Review Board) would never allow a placebo to be administered to a terminally ill patient. In fact, randomized clinical trials consist of the best current treatment versus the investigational agent being tested within the said trial.
The treatments that are being tested have passed all of the safeguards to make sure that they are effective and safe for patients. All of the drugs that are administered currently in an oncology setting, were first approved through a clinical trial and then FDA Approved.
The patient is the star of the clinical trial. During the trial, all patients are very carefully monitored and under extreme care. The patient is in control during the trial and as stated, can drop out of the trial at any time with no repercussions.
If participating in a clinical trial interests you, take the initiative to find out what clinical trials you are eligible for. You can create a free account on HealthTree Cure Hub and find personalized clinical trials that you are eligible for today! Then, you can bring information on a trial that interests you to your treating physician so that they become aware you are invested in your care and ready to take the next step.
Whether you have a precursor myeloma diagnosis such as MGUS or Smoldering Myeloma, or you are on maintenance therapy and would like to participate in a trial about the effectiveness or duration of maintenance drugs, there are myeloma clinical trials available to you. There are even clinical trials testing the quality of life (or in other words, testing other things than treatment).
The drugs themselves are covered by the company providing the treatment, and all other costs are covered through insurance or the trial's sponsor, even if these costs aren't directly related to the clinical trial. There are also many foundations that provide grants for transportation, lodging, and even child or pet care.
Especially in myeloma, the research space has become increasingly competitive because there are so many drugs being developed. Only the best drugs make it to clinical trials. Especially compared to the myeloma field 15-20 years ago, we truly have a wealth of clinical trials available for patients.
I hope that as you read these myths, something resonated with you, or perhaps you learned something. Please share this article with your support group, friends, or myeloma community, and let's increase participation in clinical trials to find a cure together.
Thank you to Dr. Cole for his shared time and knowledge with us.
about the author
Audrey joined the Myeloma Crowd as the Community Program Director in 2020. While not knowing much about myeloma at the start, she has since worked hard to educate herself, empathize and learn from others' experiences. She loves this job. Audrey is passionate about serving others, loves learning, and enjoys a nice mug of hot chocolate no matter the weather.