4 Reasons To Participate in Clinical Trials if You're Latinx

Several years ago I attended an event where a woman talked about the need for diversity in breast cancer clinical trials. She explained that if people of color are not included, how will we know if the standard of care is actually a true standard for our genetic makeup. I left there wanting to know more.

I was excited to speak with my oncologist about clinical trials and at my next appointment I told her about my interest. She explained that at the center where I’m treated, most clinical trials were only available for metastatic patients. I left disappointed, but not discouraged.

Via social media, I was introduced to the Susan Love Research Foundation (now the Tower Cancer Research Foundation) and signed up for the Love Research Army. I learned that there is a difference between clinical trials and clinical research trials. Clinical trials test the safety and effectiveness of medical interventions while clinical research works to generate data and is not meant to meet health needs of individuals patients.

Right away I registered for Predicting Brain Health After Chemotherapy and was accepted. Over the course of two years I’ve had two brain MRIs, had verbal memory recognition screenings, and online tests. Results from the study are scheduled to be released in 2025. My hope is that these results will lead to a treatment that can reduce the side effects of chemotherapy on the brain.

During an appointment last year, my oncologist told me that a clinical research trial was available and since I had noted interested, she wanted to provide me the details and opportunity to apply. I did and was accepted into the clinical trial. I’m currently in a phase three study of adjuvant endocrine therapy. The medication I’m on via the clinical trial has less side effects than what is normally prescribed.

I’ve participated in several other research studies, from survivorship to mental wellness post active treatment. When I tell friends and family they usually ask why.

4 Reasons Why Latinx Participation in Clinical Trials is Crucial

Expanding Latinx participation in clinical trials is imperative for several reasons.

Genetic Diversity: Latinx populations can have unique genetic markers and predispositions to certain diseases. Including Latinx individuals in clinical trials helps researchers understand how treatments, drugs, and therapies might work for diverse genetic backgrounds, ensuring they are safe and effective for all populations.
Health Disparities: Latinx communities are disproportionately affected by breast and gynecologic cancers. Clinical trials can help develop targeted treatments and prevention strategies for these issues, addressing disparities in health outcomes.
Better Health Outcomes: Participation in clinical trials offers Latinx individuals access to cutting-edge treatments that might not be available otherwise. This can lead to better health outcomes for individuals and, ultimately, for the broader community.
Personalized Medicine: As medicine becomes more personalized, it is important to have data from a wide variety of ethnic groups. Clinical trials that lack Latinx participation may result in treatments that are less effective for the population or may miss important side effects.

Debunking Common Myths About Clinical Trials

There’s still work to be done. There are many myths surrounding participation in clinical trials, which can cause confusion or hesitation and hinder participation. Debunking these myths helps clarify the importance and value of clinical trials in advancing medical research and treatment.

Some of the common myths include;

clinical trials are unsafe
they are only for people with no other treatment options
you’ll be treated like a “guinea pig”
you’ll receive a placebo instead of real treatment
once you are in a trial, you can’t leave
trials are only done at larger academic institutions

In reality clinical trials are highly regulated and follow strict guidelines. While some trials do focus on people who have exhausted other treatments, many are open to patients at various stages and some involve healthy volunteers. Standard of care is provided, even if a placebo is used, it will be in addition to, not in place of.

Participation in clinical trials is voluntary and participants can withdraw at any time, for any reason. Many trials are conducted in community hospitals, clinics, or even through telemedicine, making participation more accessible for people in different locations.

It’s important to share information about clinical trials, to dispel the myths, and encourage the Latinx community to participate when it makes sense. The more inclusion there is, the better the outcomes will be.

Sources: Breast Cancer Research Foundation, National Breast Cancer Coalition, Eli Lilly