Have you ever wondered if the medications you’re taking were tested on people like you? It’s a question that’s more important than you might think, and recent changes in the medical world could have a big impact on your health. Let me explain why this matters and what you can do about it.
In 2023, a law called the FDORA Act was passed. It required drug companies to make sure their research included a more representative group of people. This was a big step forward because it meant that new treatments would be tested on a wider range of patients, making sure they work for everyone. But now, there’s a problem. The guidelines for this diversity have been taken down from the FDA’s website, and suddenly, the word “diversity” itself has become controversial.
Why should you care? Well, here’s the thing: modern medical treatments, especially for diseases like cancer, are becoming more and more
precise. They often work by activating your immune system in specific ways. But here’s the catch – our immune systems can vary based on our ethnic background, where we live, and even what we eat.
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Imagine if a new cancer drug was only tested on people living in big cities. Would it work the same for someone living on a farm? Maybe not, because their diets and environments are different, which can affect how their bodies react to the medicine. Or think about a medication tested mostly on one racial group – it might not work as well or could even be harmful for people from other backgrounds.
This isn’t just about race, though that’s a big part of it. It’s about making sure medicines are safe and effective for everyone, no matter their background or where they live. Right now, less than 5 percent of patients who could participate in medical research actually do. That means we’re missing out on a lot of important information about how treatments work for different people.
The situation is especially concerning for Black patients. They’re often missing in medical studies, which means we don’t always know how new treatments will affect them. This could be one reason why Black patients often have worse outcomes in diseases like cancer.
So, what can you do about this?
- Ask questions: When your doctor prescribes a new medication, ask if it has been tested on people like you. This includes your race, but also considers factors like where you live (city or rural area) and your lifestyle.
- Get informed: Look up information about clinical trials for any conditions you have. Are they including many different groups of people?
- Speak up: If you’re eligible for a clinical trial, consider participating. Your involvement could help ensure that new treatments work for everyone.
- Share your concerns: Talk to your healthcare providers about this issue. Let them know you think equitable access in medical research is important.
- Spread the word: Tell your friends and family about this issue. The more people who understand its importance, the more pressure there will be to address it.
- Contact your representatives: Let your elected officials know that you support all identities in medical research.
Remember, this isn’t about politics – it’s about your health and the health of your loved ones. We all deserve treatments that have been proven safe and effective for people like us. By speaking up and asking questions, you can help ensure that medical research serves everyone, not just a select few.
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The next time you hear about a new medical breakthrough, ask yourself: “Was this tested on people like me?” If we all start asking this question, we can push for research that truly represents all of us, leading to better healthcare for everyone.
Ruemu E. Birhiray, MD, is a hematologist/oncologist and clinical investigator at Hematology Oncology of Indiana in Indianapolis and president and CEO of Indy Hematology Education. He is also a clinical professor of medicine at Marian University College of Osteopathic Medicine in Indianapolis. Dr. Birhiray has published research on immunotherapy, lymphomas, and bone marrow transplantation, and recently authored a practical strategy for creating diversity, equity, inclusion, and access in clinical research, which appeared in Blood Advances.
