Cystic fibrosis (CF) is a progressive and rare genetic disease that has a misperception among the healthcare community that it only impacts non-Hispanic whites. However, in the United States, there are more than 3,000 Latinos living with CF. They frequently face healthcare disparities and misdiagnosis for “not fitting the mold” of a typical person with CF.1
Marieliz L. from Puerto Rico is one of many examples. She was misdiagnosed with asthma at birth. Finally, at age 24 she received her CF diagnosis. With very little Spanish language resources and in-culture information about Latinos living with the disease, she fought her entire life to explain her symptoms to her doctors to get the right diagnosis. Her struggles ultimately led her to become a fierce advocate for other Latinos living with CF.
“I had to learn how to live with cystic fibrosis and all of my medical needs – physical therapy and medications – but today I feel incredibly blessed. I learned to enjoy each day and appreciate life. I want to share that with my community,” she said.
Caregivers face these disparities too. Olga G., a Mexican mother and caregiver of a 12-year-old with CF, relied heavily on doctors and caseworkers to understand her child’s disease. Because of her limited English speaking ability, her child’s CF journey taught her the importance and need for Spanish language information, early detection, and appropriate treatments. She also saw the intrinsic value of a Latino CF community to turn to for advice and support.
Somos La Gran Familia FQ (We are The Extended CF Familia)
Marieliz and Olga are just two of the many Latino stories that inspired the creation of Somos La Gran Familia FQ (We Are the Extended CF Familia), which provides Spanish resources and information for Latinos living with CF.
The CFfamilia.com content hub offers personal stories, educational resources, and information about local CF events and Spanish-led support groups. To make CFfamilia.com possible, Genentech partnered with The Bonnell Foundation, a CF advocacy group, which offers emotional and financial support, as well as tools to navigate the difficulties of living with CF. It also connects families with resources throughout their CF journey.
What Is Cystic Fibrosis (CF)?
CF is a genetic disease that causes lung infections and limits a person’s ability to breathe. People with CF produce vast amounts of thick mucus throughout their body’s organs. In the lungs, the mucus clogs the airways and traps germs leading to complications such as infections, inflammation, and respiratory failure. Although most people are diagnosed with CF by the age of two, some are not diagnosed until adulthood.5
CF can be even more challenging for Latinos because they are already at a higher risk of acquiring pseudomonas aeruginosa, a drug-resistant pathogen, at an earlier age.2 They may also have different responses to environmental, healthcare-related, or biological factors that affect the severity of their CF, resulting in a 27% higher rate of death compared to non-Latino whites.3,4
There’s an urgent need to advance health equity - from diverse patient representation in clinical research to access to care for all patients. We must work to understand the drivers behind the disparities that exist today and collaborate across the healthcare ecosystem to tackle them. We’re focused on advancing the inclusion of underrepresented groups in research, development, and care delivery to enrich scientific insights, achieve health equity and ensure access and equitable outcomes for all. For more information about Genentech’s work to advance health equity, click here.