Loriana Hernandez-Aldama is an award winning journalist who now devotes her life to patient advocacy and education. She spent over 20 years in TV broadcasting, with a passion for covering topics on health, wellness, and nutrition, before receiving a leukemia diagnosis. Amidst an arduous fight where she was isolated from her family and battling the fast moving form of leukemia, Hernandez-Aldama pivoted her life’s mission to empower other cancer patients through their own journeys. Still fighting cancer, she founded Armor Up for Life, a non-profit dedicated to educating and inspiring underrepresented communities prior to receiving a diagnosis and supporting those with a diagnosis through their battle to success. Last month, Hernandez-Aldama joined Inato’s Marketing Lead, Laurel Uballez, and Senior DE&I Growth Manager, Atira Goodwin for a conversation on Latino oncology patients.
Hernandez-Aldama’s advocacy is aimed at the success of all patients, but as a Latina woman, her conversation with Inato’s team focused on the issues that specifically affect the Latino community. She explained that screening rates for Latino patients are low, meaning cancer diagnoses late in the progression of the disease are the norm. On top of the crushing emotional effect of a late diagnosis, with 15% of Latinos in the U.S. living below the poverty line and 20% of the population uninsured, the impact of cancer is financially devastating. To minimize the harmful mark cancer leaves on Latino families, Hernandez-Aldama emphasized the significance of educating these communities on early screenings and prevention as well as trial participation. Increasing patient engagement and awareness comes from time, resources, and a significant amount of trust. Here are three of the steps Hernandez-Aladama suggested sponsors take to build that relationship with Latino communities:
- Educate providers and patients about pre-screening
Hernandez-Aldama shared a personal story about her mother, a woman who fought her own battle with cancer. Prior to the cancer diagnosis, her mother was sick with a cough for weeks. She visited her doctor multiple times over the course of her illness, and each visit was reassured that it was nothing more than a case of laryngitis she couldn’t shake. Hernandez-Aldama recalled the moment when she moved closeby to her mother and grew doubtful that laryngitis was the answer, “I said, you don’t have a cough. You have cancer.” Hernandez-Aldama brought her to the doctor for a screening. Testing results uncovered a late stage throat cancer. In fact, the cancer was developed enough that, had Hernandez-Aldama not stepped in and pushed for a screening, the cancer may have been discovered too late, “She would have been dead had I not moved here and realized this was an ongoing issue.”
As evidenced by her mother’s story where the care team didn’t test for cancer, educating providers is just as crucial as educating the patients. Despite often being located outside of large cities and lacking the advantages academic centers have, community sites work hard for the populations they serve. Because of this, intentional advocacy is critical to ensuring that cancer screenings are top of mind for community doctors and researchers. Pharmaceutical sponsors need to connect with community physicians to build awareness campaigns, invest in educational resources, and provide oncology lectures. These simple efforts would have a significant impact for communities with lower screening and prevention rates.
- Improve the accessibility of consent forms
Thoughtful awareness and comprehensive education materials can be a game changer in boosting interest in participating in oncology research for Latino patients as well. Trial consent forms are densely packed with medical jargon making them nearly impossible to understand for many patients. Hernandez-Aldama thought back to her own experience reading through one: “At the time, they’re telling me I may not live to see my son, I’m throwing up, I can’t see the fine print, I can’t read it because of the chemo I’ve had. Then they’re asking if I want to sign up [for the trial].” Even with over 20 years of experience covering health issues in her journalism career, the fine print of the form was a challenge for her to understand. For patients with no background in clinical research or the medical field, who don’t speak English as their first language, or don’t have insurance, the consent form is a massive obstacle.
Hernandez-Aldama proposed condensing the consent forms into video format to improve their accessibility. With a video, patients could have a deeper understanding of the effects the trial drug will have on their body, see visual examples of the treatments they will undergo, and, if relevant, the impact their participation, as a member of an underrepresented demographic, would have on improving data and generalizability for others that identify with that population. Accessible consent resources could boost interest in signing up for a trial, potentially changing the story for Latinos who are consistently underrepresented in clinical research. More than that, it would give patients in dire situations a better chance at healing.
- Empower existing organizations
The third key piece to engaging Latino communities for oncology treatment is gaining trust locally. Cancer significantly alters a patient’s life and an opportunity to receive medication still in the research stage may raise an eyebrow for patients without prior knowledge of trials. By supporting local nonprofits in action, sponsors can empower those already involved with oncology patients rather than starting from scratch.
Local nonprofits have the community ties that allow them to deeply understand the people they serve. They know what resonates, how to reach people, and have the trusted presence that allows for successful campaigns and outreach. Sponsors that form relationships with these organizations and provide materials and financial support where they need it, can remove patient apprehension towards big name pharma companies. Where trust falters is when additional support to the community comes only on a trial-by-trial basis. “When you have a trial, you’re representing the whole brand. It pays to invest in building trust with the patient not just at mile 26 but at mile zero before they walk through the doors,” Hernandez-Aldama explained, “In the Latino community, they’re not getting scanned. They’re not even coming through the doors for primary care and screenings.” Without creating a foundation of trust to get the conversations going, they won’t be interested in trial recruitment. However, once the time and work has been put into the community, patients may feel more comfortable and empowered to choose to participate. What results is historically underrepresented patients, like the Latino community, receiving support to engage in preventative measures, learn about cancers and risks, and join trials knowing their health and healing is the primary motivation.
The solution to engaging Latino oncology patients is one that will require time. Right now, they make up less than 4%, and in some reports as low as 2%, of oncology trial participants. This means undoing that trend and promoting inclusion will require concerted efforts. However the invaluable result of broader inclusion for Latino patients is a win for all.