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We Are
The Extended
CF Familia

An Extended Familia for
Latinos Living with CF

In the United States, there are more than 3,000 Latinos living with cystic fibrosis (CF)1, a disease that is frequently considered a Caucasian-only disorder by society and healthcare professionals.

Consequently, many Latinos with CF are often misdiagnosed because they do not fit the typical CF patient archetype. In addition, many Latinos encounter language and cultural barriers which make them feel detached within an already isolated population.

In collaboration with Genentech, the Bonnell Foundation is proud to promote a Latino focused educational and awareness campaign, We Are the Extended CF Familia (Somos La Gran Familia FQ), to empower and inform Latinos living with cystic fibrosis (CF). Together we are committed to providing the necessary resources and community support throughout their CF journey to help close the health equity gap that exists.

We’re seeing more cases in the U.S. within the Hispanic community:

In line with national population trends, the number of Latino patients diagnosed with cystic fibrosis in the US has increased in the past 15 years.1

Harder to diagnose:

CF patients of color are over twice as likely to have an unclassified CFTR mutation versus non-Hispanic whites.2 Latino CF patients have higher false negative rates with genetic panels and newborn screening – for instance, the newborn CFTR 23 variant panel has a 76% detection rate for Caucasian CF patients versus 48% for Latino CF patients.3

Excluded from genetic research:

Precision medicine like CFTR modulators have had an amazing impact on the general population, but at the same time has made disparities of care even sharper for people of color who are excluded or underrepresented in genetic research.2

Facing greater health challenges:

Hispanic patients may have increased exposure or differential response to environmental, healthcare-related or biological factors that affect the severity of pulmonary disease in CF and may lead to disparities in pulmonary function.4

Latinos and Cystic Fibrosis – what’s really happening

The data shows that Latino patients are facing more health disparities in the U.S.

Cases:

In the U.S., Latinos make up just under 10 percent of the total CF cases (or 3,000 people).1

25 percent not eligible:

Sadly, the stats show that Latinos with cystic fibrosis don’t have the hope for any CFTR modular therapies.2

FEV1

Latino patients have a 5.8% lower FEV1 predicted than non-Latino white patients with CF.4

Higher mortality rate:

Despite great advances in CF treatment and survival, Hispanic patients are 27% more likely to die from the disease due to CF compared with non-Hispanic white patients.5

The Latino community faces disproportional healthcare challenges.

CF Familia shares CF healthcare related contributing factors:

  • In pharmacology clinical trials for CF medications, Latino patients were proportionally underrepresented, taking part in only 7.5% of studies.4
  • Latino CF patients have a higher risk of acquiring pseudomonas aeruginosa at an earlier age and a higher risk for severe forms: mucoid, chronic, multidrug-resistant.6

Additional societal and cultural factors that affect Latino patients:

  • Language barriers and lack of in-culture support.7
  • Socioeconomic4
  • Environmental factors play a bigger role (overpopulation, automotive plants, smog, airplane fuel, industrial areas)4

The Bonnell Foundation takes pride in housing these educational resources to raise awareness among the CF community about the discrepancies in both diagnosis and care amongst people of color. We are fully committed to seeing that anyone with CF is correctly diagnosed either through mandated newborn screenings or by a pediatrician; we know that early intervention is the key to improving health outcomes among people of color. Please join us in this fight!

References:

  1. Cystic Fibrosis Foundation Patient Registry 2020 Annual Report. ©2021 Cystic Fibrosis Foundation.
  2. McGarry ME, McColley SA. Cystic fibrosis patients of minority race and ethnicity less likely eligible for CFTR modulators based on CFTR genotype. Pediatric Pulmonology. 2021; 56: 1496-1503.
  3. Zeiger AM, McGarry ME, Mak ACY, et al. Identification of CFTR variants in Latino patients with cystic fibrosis from the Dominican Republic and Puerto Rico. Pediatric Pulmonology. 2020; 55: 533-540.
  4. McGarry ME, Neuhaus JM, Nielson DW, Esteban B, Ngoc PL. Pulmonary function disparities exist and persist in Hispanic Patients with Cystic Fibrosis: a longitudinal analysis. Pediatric Pulmonology. 2017 Dec; 52 (12): 1550-1557.
  5. Rho J, Chul A, Gao A, Sawicki GS, Keller A, Jain R. Disparities in Mortality of Hispanic Patients with Cystic Fibrosis in the United States. A National and Regional Cohort Study. American Journal of Respiratory and Critical Care Medicine. 2018 Oct 15; 198 (8): 1055-1063
  6. McGarry ME, Huang CY, Nielsen DW, Ly NP. Early acquisition and conversion of Pseudomonas aeruginosa in Hispanic youth with cystic fibrosis in the United States. Journal of Cystic Fibrosis. 2021 May; 20 (3): 424-431.
  7. Muñoz Blanco S, Raisanen JC, Donohue PK, Boss RD. Enhancing pediatric palliative care for Latino children and their families: a review of the literature and recommendations for research and practice in the United States. Children (Basel). 2018 Jan; 5 (1): 2

Campaign Videos

This Campaign Anthem video amplifies the awareness of Latinos with Cystic Fibrosis.


Resource Links

Support Group for the Spanish-Speaking CF Community: Second Wednesday of Every Month

Led by Marilyn Calderon, LICSW
The group meets on the second Wednesday of every month from 5:00 to 6:00 pm PT (8:00 to 9:00 pm ET), and addresses the unique issues faced by Hispanic/Latinx individuals and families affected by CF. The group is open to adults with CF as well as family members of adults and children with CF. The group meetings are held in Spanish and facilitated by Marilyn Calderon, LICSW.

To register, click here. Please allow 3-4 hours before the meeting to register.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, Gilead Sciences, and private donors.