No Longer Enough to Merely Sit or Speak
ne of the most encouraging ongoing developments in clinical research and healthcare innovation is that the voice of patients and patient advocates continues to grow louder and stronger. “We should be included because without us, there’s no you. We are at the center of your work,” explains cancer survivor, former network news anchor, and DIA 2024 Patient Partner Loriana Hernandez Aldama in this Q&A with DIA Patient Engagement Scientific Project Manager Maria Paula Bautista Acelas.
Loriana Hernandez Aldama (LHA): ArmorUp for Life creates content to improve health literacy because we know that’s a big issue. Our goal is to educate and empower patients and give them the tools they need to master survival. We know that when we can educate patients and improve health literacy, then we can improve shared decision making and improve patient outcomes. But this is not how I started my career.
I’m a former network news anchor and medical reporter. For more than 25 years, that was my purpose and my passion. As reporters, we advocate for people as part of our storytelling: We see an issue and we want to educate the community about what’s happening, empower people, and effect change. This didn’t change when I was diagnosed with AML (acute myeloid leukemia).
In 2014, I was in fertility treatment to have a second baby (I had a newborn as well) and I was shocked when my oncologist told me that I had AML, a blood cancer. In an instant, I had to hand my two-year-old son over to my husband to raise, got on a plane, and went to Johns Hopkins to fight for my life.
Being misdiagnosed TWICE, feeling unheard, experiencing firsthand the gaps and disparities in the Latina patient experience, all became the biggest story of my career. So many moments along the way fueled my purpose. Two physicians in Texas misdiagnosed me and told me: “You’re just tired and overworked—a new mom trying to have it all.” So, I contacted an oncologist at Johns Hopkins who looked at my biopsy and said: “Maybe you ARE tired and overworked, but you have leukemia and you’re dying. Get on a plane. We have a bed waiting. You cannot afford to waste any time.”
Even being well-educated, I wasn’t health literate. There’s such a wide spectrum of health literacy. You can be well educated but not health literate in something we may be battling ourselves. Then we have the health literacy of underserved populations, the Black and Hispanic communities where 58% to 63% have basic or below basic health literacy rates, which means, according to research, that some don’t even know what three times (the 3x) on the bottle means.
I launched ArmorUp for Life because my oncologist said to me: “You need to put your armor on. You’re going to be here for an entire year. You have a one in four chance—if you were German, not Cuban, because we don’t have statistics on how Latinos do—to get out alive.”
Everything was this “light bulb moment” of another void for the underserved brown and black community, the patient experience, the lack of mental health help. How did I miss these stories? I realized: “This story is bigger than me and I have a moral obligation to help others. I can’t just fight for my own life. If I live, I will serve.”
I have severe cancer-related post-traumatic stress disorder (PTSD) and depression because I had no mental health help, even at a world-renowned institution. I had the absolute best medical team but no psycho-oncology support. Rip a child from a mother and tell her she has a one in four chance of surviving. Separate us for an entire year. I was so depressed and got so lost and nobody helped me mentally. Nobody should suffer like that.
But I got back up. Five years later to the day, I discovered I had breast cancer. More voids, more disparities, and more times I was ignored. And if I had trouble, even though I’m well-educated, well-connected, and at an NCI-designated Comprehensive Cancer Center, what happens to the 80% of cancer patients who get their care at community cancer centers? Who is falling through the cracks? Who are we losing?
If people aren’t mentally in the game, they’re not going to adhere to drugs, no matter how innovative. If you don’t help us from a patient experience, if you don’t help us mentally, if you don’t help us financially or help connect us to resources, we’re not there to take those drugs. Patients need help in so many parts of this ecosystem.
DIA: What are the most common misconceptions about cancer and cancer patient care?
LHA: I don’t even know where to start with the misconceptions, but so much is overlooked. You might think that a patient has it together or seems calm, but we all need help. We need to focus on underserved communities because they need even more help.
I don’t know if it’s a misconception, but there is a huge disconnect between what patients need and what those in the industry think we need. I have friends working very hard in biotechnology and pharma and diagnostics, and I applaud their efforts, but there’s a big disconnect between what they see as our needs and our actual needs.
Ten years ago, when I started using the words “psycho-oncology” and “pre-hab” and other things I was learning about, people said, “Nobody’s ever going to listen to you about psycho-oncology. The pharmaceutical business is not head-shrinkers.” We don’t need industry to be a psychiatrist or psychologist, but we need them to fund that type of support. Put your arms around us and help us with different resources. Because when a patient gives up, we’re not taking your drug.
DIA: Based on your experience, where can we do more to help cancer patients and research?
LHA: NCI-designated comprehensive cancer centers have patient navigators. Even with government funding, they’re having trouble keeping up. Many patients see their navigator only once in their journey. That’s not enough. We need more navigational help so we can stay in treatment and on treatment to get the help we need. If I had the mental help I needed when I was heartbroken from being separated from my son, I wouldn’t have the PTSD and depression I suffer from every day. I’m not a war hero, but I went through a different war and I’m not the only one. There are patients going through this all the time and we need help.
I was diagnosed with breast cancer five years after I walked out of the leukemia building at Johns Hopkins. I not only went from a liquid tumor to a solid tumor but went into the most heavily funded cancer (breast cancer). I’m on the same campus and walk into the breast cancer building and see people with clipboards handing out tickets for free parking or transportation. “Here’s resources to fund your childcare while you’re here.” “Here’s meal tickets.” It was like Disneyland. My jaw dropped. I was so happy because those women need help, and I was one of them.
But I couldn’t keep my heart from sinking because we need equity across all cancers. There are people dying across the board. I have experienced it myself in blood cancer. I understand that it’s not heavily funded like breast cancer because it’s not “one in eight,” but to experience and witness it myself was heartbreaking. Where is this help for my blood cancer friends across the street?
We know AML needs innovative treatments, and there are a lot of companies collaborating on a good pipeline of drugs for AML. We talk about equity so much. We need equity across all cancers when it comes to supporting patients. It doesn’t matter what the cancer is, we’re all going to go broke in the process. We all need financial help. We all need mental health help. It’s just so important to support patients across the board. Breast cancer should be the model of the support we give to patients affected by other cancers. Let’s help everybody.
DIA: What are some of your goals for the future?
LHA: We are working to section our Stage Free podcasts into different categories for different cancers, for mental health like psycho-oncology, for pan tumors, and for health literacy. We are also working on partnerships with some larger organizations to amplify and get ArmorUp for Life involved in healthcare policy. We focus on health literacy and patient education because that’s what we can do right now, but we want ArmorUp for Life to grow. We want a larger team so we can do more on so many different levels. We need paid patient navigators. There are so many people who need help. We need funding to do that.
Eighty percent of cancer patients get their care at community cancer centers, but community cancer centers everywhere are struggling, across the board. Their doctors are not only overburdened but may not be up to date. People reading their radiology are not specialists, and patients are falling through the cracks.
We know that people are getting diagnosed at a later stage. Equipment is older. When I got my scan at a community cancer center, it was like using an iPhone 6 when everyone else has an iPhone 15 and they told me, “We can’t tell if you have cancer again.” These are the disparities we’re facing and need to be addressed.
Providers need to be well-versed, too. It’s not just learning about the new innovation: It’s having compassionate leadership, listening to the patient, and not ignoring what they’re saying.
DIA: What are your thoughts on programs like DIA Patient Partners to amplify awareness of advocacy?
LHA: It’s phenomenal that you include patients because that’s so important. We’re starting to see patients included. We should be included because without us, there’s no you. We are at the center of your work. It’s like building a restaurant and not talking to the chef. If you’re going to work on things, include the people who are directly impacted. And not in phase 3 of a clinical trial; talk to us at the beginning.
It’s not enough for me just to have a voice at the table or help you set the table. I want to help you build the table. I should be there every step along the way. Don’t come to me at the end and ask what’s wrong with this process or this consent form. Including the patient voice early and often is so important. The fact that DIA was so ahead of things, acknowledges that patients are at the center of your work and gives us a voice is so important. It is an honor to be invited to do this work that can affect so much change.
When I started attending conferences post-cancer 10 years ago, people I would meet in the exhibit hall would ask, “What company are you with?” When I said, “I’m a survivor,” they would keep walking like they didn’t have any networking to do with me. I have seen a shift in that. People are now saying, “Tell me about your experience.” They know it’s important to hear because we can help each other. We can give you insights that can make you do your job better, and you can help us live our best lives. Together, we can come up with a winning combination. It has been eye-opening and exciting to see that people are finally leaning in and listening to the patient; not just saying that we’re at the center of their work but including us and listening to us and allowing us to be part of the changes that are coming.