Apr, 2025
Thanks to a generous medical aid donation from Direct Relief, more rare disease patients in Lebanon now have access to the best available treatment.
In Lebanon, access to medication for common chronic illnesses has been fraught with uncertainty in recent years. Access to medications for rare diseases like cystic fibrosis is even more limited. Treatment options are limited and prohibitively expensive. Many patients confront both financial and logistical barriers to secure the life-saving medication they need.
Her older sister also had cystic fibrosis and passed away at 36 due to liver complications. Learning she had the same condition was devastating — but Gabriella resolved to advocate for herself and obtain the best care she could.
For Gabriella, a 25-year-old from Deir El Ahmar in the Bekaa Valley, every breath has been a struggle. Diagnosed with cystic fibrosis at 16, she endured years of pain and misdiagnoses, unable to access proper medical care due to her village’s remote location.
Before passing, her sister reassured Gabriella that her condition was milder and that she had a chance for a better future. Determined to find treatment, Gabriella discovered a U.S. medication costing $6,000 per month. Crowdfunding helped her secure it twice, but sustaining the cost was impossible.
Fadi, a 37-year-old business owner from Tripoli, shares a similar story. The lives of he and his family were turned upside down when he was diagnosed at 17. The disease, which severely impacts lung function and overall health, had already taken the life of his sister at the age of 9. For years, his every breath was a struggle, marked by frequent hospitalizations and an uncertain future.
“Cystic fibrosis is not just the patient’s battle—it’s a battle for their whole family,” Fadi says. “Every time I was hospitalized, my parents and siblings put their lives on hold.”
Without the proper treatment, life with cystic fibrosis is an excruciating daily struggle.
“You wake up with a buildup in your chest, you sit up and start coughing—every single morning—for at least half an hour,” Fadi says. “Then you have a couple of hours of inhalers and ventilators just to feel slightly better, and only then can you start your day.”
"Cystic fibrosis is not just the patient’s battle—it’s a battle for their whole family."
After years of temporary solutions and experimental treatments, Fadi eventually discovered a combination medication — elexacaftor/tezacaftor/ivacaftor — developed by Vertex Pharmaceuticals, a U.S. company. For a time, he was able to get a substitute medication from Argentina, until the cost of that medication rose and became unsustainable.
Just as Fadi found himself out of options, Anera and Direct Relief intervened, bringing a supply of the combination medicine to Lebanon through a partnership with Vertex in the Cystic Fibrosis donation program at the perfect moment.
“This is a victory for CF [cystic fibrosis] patients in Lebanon,” says Fadi.
“If Trikafta [the brand name of the drug] is always going to be available, it changes things completely. CF patients can think about their future a little further than securing the next box of pills.
"CF patients can think about their future a little further than securing the next box of pills."
Fadi also considers himself fortunate to have been able to visit the United States, where he received specialized care for cystic fibrosis.
“I know I was lucky. I got to visit specialized care centers, meet experts, and receive the best possible treatment. But I also know that many others don’t have that chance.”
Despite his health struggles, Fadi works tirelessly not only for himself but for all other CF patients in Lebanon. He has been connecting with regional associations that bring fellow patients closer to potential solutions. His dream is to establish a specialized medical center in Lebanon that provides dedicated care for cystic fibrosis patients. “I am grateful to have been fortunate—that’s why I want to help others get the care they deserve.”
“The moment I started taking the new medication, my life changed.”
When Gabriella heard about the combination drug’s arrival in Lebanon, she immediately registered to receive it.
“The moment I started taking the new medication, my life changed,” she says. “It’s free, and it is even more effective than the medications I had before. I no longer suffer from recurring infections, and I finally feel hopeful.”
For Gabriella, Fadi, and other cystic fibrosis patients in Lebanon, consistent access to the combination medication remains critical. Without it, their health deteriorates rapidly, and the burden on families grows heavier. Their stories are a testament to the impact of medical access and the urgent need to ensure that every patient can continue receiving this life-changing treatment.
With the support of organizations like Anera and Direct Relief, hope remains alive for patients like Gabriella and Fadi. Every breath they take is a step toward a future where cystic fibrosis no longer dictates the course of their lives.
“I no longer suffer from recurring infections, and I finally feel hopeful.”
