Struggling for Breath: The Harsh Reality of Cystic Fibrosis in Lebanon

In Lebanon, navigating the healthcare landscape for chronic illnesses is a relentless battle, especially for those affected by rare diseases like cystic fibrosis. With treatment options scarce and exorbitantly priced, patients frequently find themselves grappling with daunting financial and logistical hurdles to access life-saving medications.

Gabriella’s Fight Against the Odds

Meet Gabriella, a 25-year-old from Deir El Ahmar in the Bekaa Valley, whose life has been punctuated by hardship since her cystic fibrosis diagnosis at age 16. Having to face years of pain and misdiagnoses—all due to her village’s isolating geography—Gabriella was determined to turn her plight into advocacy for better care.

Her own sister succumbed to the same illness at just 36, leaving Gabriella with the haunting realization of her mortality. Nevertheless, her sister’s words of comfort instilled hope in her heart, motivating Gabriella to pursue the best possible treatment.

The Harrowing Costs of Life-Saving Medications

Gabriella discovered a U.S. medication with a staggering price tag of $6,000 per month. Although crowdfunding secured her the drug twice, sustaining such expenses proved impossible.

Fadi’s Story: A Family’s Ordeal

Fadi, a 37-year-old from Tripoli, shares a similarly tragic narrative. Diagnosed at 17, cystic fibrosis became a family affair, draining the hopes and resources of his loved ones. The disease had already claimed his sister's life at 9, casting a long shadow over Fadi's own fragile existence.

"Cystic fibrosis is not just the patient’s battle—it’s a battle for the entire family,” Fadi reflects, recalling the emotional toll each hospitalization took on his parents and siblings.

Living with Cystic Fibrosis: A Daily Struggle

Fadi recounts the grueling daily rituals of dealing with his illness. "You wake up with a buildup in your chest, coughing for half an hour before you can even start your day. The process of feeling human again involves a barrage of inhalers and ventilators."

A Glimmer of Hope: New Treatment Options

After years of trial and error, Fadi discovered a breakthrough medication—elexacaftor/tezacaftor/ivacaftor—developed by Vertex Pharmaceuticals. However, finding a sustainable source proved elusive until help arrived.

Thanks to Anera and Direct Relief, a steady supply of this miracle drug was brought to Lebanon just in time, igniting a newfound sense of hope among cystic fibrosis patients.

Fadi exclaims, "This is a monumental victory for CF patients in Lebanon. If Trikafta remains available, it completely transforms our outlook on life.

Building a Supportive Community

Fortunate to have received specialized care in the U.S., Fadi now aims to leverage his experience to uplift others battling cystic fibrosis in Lebanon. His dream? Establishing a specialized medical center that provides comprehensive support to patients.

Gabriella's Transformation

When Gabriella learned of the arrival of the groundbreaking combination drug in Lebanon, she took immediate action to register for it. Now, her life has been transformed: "The moment I began taking the new medication, I felt a profound change. It’s free and far more effective than my previous treatments. I no longer suffer from recurrent infections, and for the first time, I feel hopeful."

The Ongoing Battle for Access to Life-Saving Medication

For Gabriella, Fadi, and countless others, continual access to this combination medication is essential. Without it, their health deteriorates swiftly, worsening the already heavy burden on their families.

Their stories shine a spotlight on the urgent need for improved medical access and treatment sustainability. With organizations like Anera and Direct Relief standing by, a beacon of hope continues to illuminate the lives of cystic fibrosis patients in Lebanon, instilling the belief that their condition need not dictate their destinies.