Rare Community Profiles: #RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

#RAREis: Increasing Medical Access and Equity for the Hispanic Community through The Akari Foundation’s Initiatives

Luisa Leal embarked on one of her most challenging journeys when, at the tender age of nineteen, she immigrated from the United States from Nuevo Laredo, Mexico, carrying the weight of being undocumented and the responsibility of caring for her unborn daughter. The transition to a new country posed unique obstacles, exacerbated by language barriers that persisted despite her experiences learning English in Mexico.

Leal’s eldest daughter’s birth added another layer of complexity to her experience, as she was born with a congenital hand anomaly caused by amniotic band syndrome. Navigating the intricacies of the American healthcare industry proved to be a formidable task, especially when it came to understanding the specialized jargon. She shares:

“It’s hard enough to unpack medical lingo in your language. Now imagine having to do that in a foreign language.”

Although Leal found solace in the first pediatrician she visited, who shared her Mexican heritage, access to medical assistance remained elusive. In an era before Google, Leal relied on a pocket-sized dictionary to decode doctors’ diction. She says:

“I was just trying to read and understand everything for my daughter. At the doctors’ offices, I took every pamphlet available and tried to translate the information. I went through every paper from the doctor and the hospital, every note, translating them to learn. Everywhere I went, I carried a pen and paper to write my questions down. My nights became focused on translation.”

Leal’s relentless pursuit of knowledge came in handy when her second daughter was born with an eye disease in her right eye that severely threatened her vision. Yet her experiences in navigating the healthcare system were also negatively defined by her undocumented status. She came to understand how difficult it was for both documented and undocumented immigrants to navigate the healthcare system and find care for diverse needs, dealing with taboos, a lack of cultural awareness, and language barriers that obscure access to essential medical assistance.

Eventually, it was this understanding that spurred Leal to found The Akari Foundation, a nonprofit organization with a mission to educate and empower the Hispanic community about rare diseases, as well as help with resources, awareness, advocacy, and education—entirely in Spanish. Luisa Leal recently spoke with Patient Worthy about The Akari Foundation and its initiatives, the impact of medical gaslighting and cultural insensitivity on the rare disease community, and why she’s proud to share her story through Amgen’s #RAREis program. 

Identifying an Unmet Need

In 2016, Ariel and Enrique Nájera, twins of Leal’s ex-partner, were diagnosed with Duchenne muscular dystrophy (DMD), a severe form of muscular dystrophy characterized by insufficient dystrophin production, which leads to progressive muscle weakness and wasting.

As she engaged with Ariel and Enrique, as well as spoke with her ex-partner, Leal was struck by the difficulties they faced in accessing information on DMD in Spanish. She began seeking out workshops for them to attend around the country. The goal of these workshops was to introduce the family to physicians, grow their knowledge on DMD, and create a stronger support network. She traveled alongside them to Houston, San Antonio, New Mexico, and Arizona.

But it was an event in Oklahoma where Leal really came to recognize how broken the system was when it came to supporting immigrants and underserved communities. She noticed a family—a mother, father, aunt, and six-year-old boy—who couldn’t fully participate in the workshop because the adults were not fluent in English. The son was translating for the family and missing out on playing with the other children. Leal shares that she stepped in, telling him that she would translate for his family instead:

“And at that moment, it really hit me that these families who are looking for help didn’t have a space to receive it. There was no information in Spanish for them, no ability to access the resources that the workshop provided. I was lucky that I could understand, but what about other members of the Hispanic community who couldn’t? I remember leaving the conference and saying, ‘That’s it. I’m opening my own organization.’ I couldn’t just create a family group through the larger organization because it was spearheaded by people who don’t understand what we go through. This is more than just translation and more than just interpretation—it’s cultural.”

In 2017, The Akari Foundation was born.

The Akari Foundation’s Impact on the DMD Community

Currently, The Akari Foundation envisions a future where everyone, regardless of background, has access to comprehensive information, compassionate care, and a strong network that fosters awareness, advocacy, and education in Spanish. The foundation offers ten different programs with a main focus in education and empowerment. While The Akari Foundation’s mission was initially grounded in the Duchenne muscular dystrophy space, Leal mentions that the foundation is currently expanding to include Becker muscular dystrophy, limb-girdle muscular dystrophy, and spinal muscular atrophy, offering webinars, resource guides, in-person workshops, and psychological support.

One aspect that The Akari Foundation has been supremely successful in is physician awareness. Leal explains:

“Patients and families understand their experiences better than anyone else, and they need physicians who want to develop a stronger understanding of the culture and the language. Right now, doctors don’t learn enough about culture. If you’re a physician and a majority of your patients are Hispanic, this education is important for you. Our goal is to contribute to that growth. We have doctors contacting us because they’re surprised to find an organization focused on our community and we look forward to continuing these collaborations because there is a need.”

The Akari Foundation was initially founded in Texas, but has since expanded its reach, with a heavy focus in Puerto Rico. Additionally, The Akari Foundation is working with organizations in Chile, Nicaragua, Argentina, Brazil, Mexico, and other parts of Latin America to create offshoots and further support this community. But the organization’s impact spans even further: Leal sometimes receives messages from China or India from people who love the foundation’s educational content.

The Foundation is also working with the Senate in Mexico to see whether it is possible to track individuals with rare diseases via the census to learn whether Duchenne affects different groups or people of different backgrounds with a higher prevalence. She hopes that this research could contribute to increased awareness and provide the basis for clinical trials.

All of this work is extremely important. But at the end of the day, what makes Leal the happiest is seeing families find joy and comfort. She shares:

“The most rewarding part is knowing families can make decisions because they learn something from us, and seeing families get connected and find support. A little boy in Puerto Rico said the workshop was the best day of his life because he had never met anybody else like him. That camaraderie is invaluable. To have a mom feel like she has a heavy weight lifted off of her—it means so much to me.”

On April 6, 2024, Leal’s work was recognized when she was awarded the Heart of Gold Award from the Gordon Hartman Family Foundation/Morgan’s Wonderland for her dedication to the Hispanic and immigrant community affected by DMD and other rare diseases. Her name was also added to the Wall of Fame.

Medical Gaslighting: Preventing People from Accessing Care

Along her journey, Leal faced significant medical gaslighting. When considering why the healthcare system is so difficult to navigate, she cites medical gaslighting as a center point:

“Medical gaslighting happens so often in the rare disease community and also in the Hispanic community. We’re told that ‘you’re exaggerating,’ or ‘it’s just stress or anxiety.’ It can be difficult to stand up and advocate for yourself when you’re constantly being told that nothing is wrong. I also believe that there’s a cultural element to medical gaslighting in the Hispanic community. Our upbringing says you respect doctors or lawyers—we use ‘usted’ instead of ‘tu,’ for example—so we’re told that whatever a doctor says goes. If a doctor says you’re being a hypochondriac, you are. When you internalize that, you stop taking yourself seriously.

This leads to worse mental health, which is a taboo in our community. We’re supposed to be tough. We were raised, especially boys, to not feel anything. So we try to suck it up and continue moving forward, continue working, but we’re all in pieces—physically and mentally. That’s one thing I’m teaching my daughters: don’t suck it up. This taboo also shares why I created The Akari Foundation, because it’s important for this community to have someone who understands its culture and how people were raised.”

Another taboo that Leal has seen play out in the Hispanic community, and one she believes contributes to medical gaslighting, is talking about one’s health. She shares:

“There’s a lack of education about disease in the community and a misperception that it makes you weak. You won’t know that someone is sick because people don’t talk about it. Some people don’t want to go to the doctor. Others might not have insurance. If they see their child has an abnormal gait, like in Duchenne, a parent might write it off as, ‘I don’t have insurance, the money, or the time.’ Someone else might not say anything because it might be offensive. This makes it harder to get diagnosed at an early stage.

Then, by the time these families do make it into the clinic, they face a huge lack of empathy from doctors. Nobody tries to understand. Many places don’t offer a translator. Even something as simple as a translating hotline could be helpful, but so many places are unwilling to make this jump. But when families don’t feel supported, they’re less inclined to share their health information, which perpetuates a dangerous cycle.”

Through her work at The Akari Foundation, Leal hopes to provide insights to help families feel empowered to stand up for themselves, saying:

“If it doesn’t work with one doctor, go to another and another and another. If you don’t find your answer, continue searching. If a doctor says it’s in your head, fight for yourself and your family. Contact us, that’s what we’re here for. We can help you navigate the system. We have two social workers that aid the families as much as they can. We hold your hand and don’t let go until we figure something out. We’re here to help in any way.”

In part, this desire to help is why Leal is so proud to be included in Amgen’s #RAREis program. #RAREis elevates the voices, faces, and experiences of the rare disease community while also providing individuals and families with access to resources that connect, inform, and educate. This global program has given Leal and The Akari Foundation something incredibly valuable: the continued opportunity to raise awareness on a global scale. She shares:

“When we have the honor of putting our information out there through initiatives like #RAREis, we bring more awareness to the community and our families. We are so grateful to make a difference not just for those with Duchenne, but across the rare disease community as a whole.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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