Global outreach occurs in many different pockets of Michigan Medicine, like the work being led by Samya Nasr, director of the Cystic Fibrosis Center.
Nasr, also a professor of pediatrics at U-M, and a small team of volunteer staff and physicians are dedicated to improving cystic fibrosis care around the world, one country at a time.
Cystic fibrosis is a genetic condition that causes the lungs to produce a mucus buildup that can clog airways. Many poorer countries, particularly in the Middle East, are not testing for CF, need training in proper treatment or both.
“Most Middle Eastern countries do not have all the medication we have here to treat CF, and they don’t know the best methods for nutrition and infection control. As a result, their patients die at a very young age,” Nasr said.
Nasr said the median life expectancy for a CF patient in the United States is 47 compared to 10 in the countries they are targeting.
Nasr’s global mission began when she was invited to speak to the Middle East CF Association two years ago. Being of Egyptian background, she was already familiar with the tremendous need for CF resources in her home country and neighboring nations.
When the association asked her to lead a grant-funded program to help improve care, she stepped into action. In November 2018, she visited Marmara University CF Center in Istanbul, Turkey, to begin its first project. She brought her team to the university’s clinic in March 2019 and later, in November 2019, Marmara team members came to U-M for further training.
“We are teaching them to improve the lung function for their 340 patients,” she said. “Once they are well-trained, they will be a resource for 10 other clinics across Turkey, which cares for more than 3,000 patients. Some of these people are refugees, so we are helping Syrians and others who struggle with CF under difficult conditions.
“Over time, we will have a global reach that will touch more lives than we will ever be able to count.”
With the first project underway, Nasr — now named an international CF adviser for the Middle East CF Association — has developed a continuous process for expanding the mission.
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She takes a two-year approach to the in-person training, with an additional three years of consulting before moving on to support other nations. In the first two years, the U.S. teams visit the clinics in the spring, and visiting teams come to U-M to observe best practices in the fall.
For the next three years, Nasr and her team will meet virtually with the clinic to serve as mentors. In addition, a fellow and other faculty members will visit U-M in the summer for training.
Although Nasr hopes to have an impact on Egypt and Ethiopia in the future, these countries are still learning how to identify and test for CF, and are not yet ready for a visit from U-M. In the meantime, she has her sights on other countries in the region that have CF clinics interested in the project.
“Language, culture and politics can be barriers, but I’ve already seen global progress,” Nasr said. “Through our connections, the next Middle East CF Association conference will have quality improvement as a new theme. Observing us has had that impact, and it is changing the world of CF care.”
Q&A
What memorable moment in the workplace stands out?
I joined the University of Michigan in 1989. That year was a turning point for cystic fibrosis and for U-M. It was the year that the CF gene was identified by Francis Collins from U-M and two other researchers from Toronto. That created a lot of excitement and I was very proud to be part of it by being here.
What can’t you live without?
I can’t live without my CF team and my CF research team. They make coming to work a joy. They are my second family and friends.
Name your favorite spot on campus.
I love Michigan football. My favorite spot is the Big House.
What inspires you?
My patients and families truly inspire me. What they go through and what they do to stay healthy is humbling.
What are you currently reading?
I just finished “Anna Karenina” by Leo Tolstoy, as highly recommended by my son. Great book. Next book will be “The Silk Road, A New History of the World.”
Who had the greatest influence on your career path?
Two people influenced my career path: My husband, Sayed Nassar, and my previous director of pediatric pulmonology, Dietrich Roloff. My husband has been very supportive throughout my career. Dr. Roloff gave me a blank slate and encouraged open communication, inspired thinking and creative project development, which allowed me to flourish in the world of CF at Michigan Medicine and beyond.
