ANN ARBOR — Doctors in Egypt weren’t aware of the prevalence of Cystic Fibrosis (CF) in their country until the efforts of a University of Michigan professor brought the disease to light.
CF is genetic disease that causes chronic and fatal lung infections and interferes with digestion.
Doctors have been testing newborns for CF in the U.S. since the mid-1960s. This isn’t the case in other countries. In fact, some health experts do not acknowledge that the genetic disease exists in their countries.
Dr. Samya Nasr, professor of pediatrics at the University of Michigan Medical Center, returned to her native Egypt to try to convince doctors that cystic fibrosis existed there.
“I was going every year since 1997, talking to them about CF,” she said. “We were gradually getting them to accept the fact that CF is present in Egypt.”
In 2007 Nasr acquired a sweat test machine (which is how people are tested for CF) and was able to diagnose 12 patients with her Egyptian colleagues. To date they have diagnosed 1,000 people.
With so few CF patients diagnosed, medications are not covered by health insurance because drugs have to be licensed by pharmaceutical companies. Plus, CF medications that are accessible in Egypt are very difficult to come by and expensive. Though Egyptian doctors are finally testing for CF in Egyptian people with CF symptoms, insurance still doesn’t cover either testing or treatments for the genetic disease.
Egyptian father Anas Mansour is desperate for medications and insurance coverage. He has 5-year-old twin boys with CF, Omar and Abdulrahman.
“I was thinking of relocating by immigrating or something,” Mansour said. “This is the solution I have for them to be able to be enrolled in an insurance system that provides medical coverage. And I need U.S. medications, so they’ll live.”
In particular, Mansour can’t get digestive enzymes on a regular basis. This is crucial to CF patients to survive because they can’t digest food without supplemental enzymes. Enzymes are just one of the medicines that they need, but do not have access to in order to live and breathe.
The Bonnell Foundation is shedding a light on the struggle of CF patients and is aiding with Dr. Nasr’s efforts. Readers who want to make a donation to its Egypt project on its website should specify so with their donations: https://thebonnellfoundation.org
More can be learned about CF in Egypt on the Bonnell Foundation podcast: https://thebonnellfoundation.org/audio-podcasts/
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