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In the News

May 29, 2024 For Some Families of Color, a Painful Fight for a Cystic Fibrosis Diagnosis
Universal screenings for the inherited disease promised to get babies diagnosed and treated sooner. But they still miss some children of color.
February 28, 2023 National Geographic: Cystic Fibrosis Often Goes Underdiagnosed… Unless You’re White
“We found there's huge disparities between babies of different races and ethnicities, and whether they're going to be detected. Diagnosis really depends on what your race and ethnicity is. That's just unethical.”
February 20, 2023 ‘Caught in the middle’: A battle between Vertex and insurers is leaving cystic fibrosis patients with crushing drug costs
“It’s a pharmaceutical company versus an insurer, and each is maneuvering to increase their profits. And we all understand their goals are to be profitable. It’s a battle about who makes the most money. And patients are being putting at risk.”
October 21, 2022 Non-White Newborns With Cystic Fibrosis More Likely To Be Missed in Screening
“Newborn screenings are meant to be a public health measure that is equal across populations, but in practice, we are actually creating disparities because children of color are going undiagnosed for cystic fibrosis until an older age. That means they are treated later when symptoms occur, and their outcomes are often worse.”
November 11, 2019 Latinos on 2 Caribbean Islands Carry CFTR Mutations Seen in 1% of CF Patients Elsewhere, Study Says
Latinos in the Caribbean with cystic fibrosis (CF) carry rare CFTR gene mutations not often seen in Latin or other CF populations elsewhere, a study led by physician-scientists at the University of California, San Francisco (UCSF) found.
October 31, 2019 Long-awaited cystic fibrosis drug could turn deadly disease into a manageable condition
A new cystic fibrosis therapy dramatically improved patients’ lung function and showed clear signs of targeting the genetic root of the disease, instead of just alleviating symptoms — a breakthrough so long-sought that many doctors and patients are moved to tears when talking about it.
October 31, 2019 Rare Cystic Fibrosis Mutations Dominate in Caribbean Patients
Cystic fibrosis patients from Puerto Rico and the Dominican Republic carry different genetic variants in the CFTR gene than most CF patients, a new sequencing-based study has found, which could impair their ability to benefit from screening or treatment with new targeted therapies.
October 30, 2019 Rare Mutations Drive Cystic Fibrosis in Caribbean
Without More Diverse Clinical Trials, Life-Saving Personalized CF Therapies Will Perpetuate Health Inequality, Researchers Say

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