Indus Hospital Hosts Health Wise Session on Cystic Fibrosis with International Experts

Karachi: Indus Hospital & Health Network Karachi organized a comprehensive media awareness session on Cystic Fibrosis (CF) , bringing together leading national and international experts to highlight the urgent need for early diagnosis, improved awareness, and equitable access to specialized care for patients living with this rare genetic disorder in Pakistan.

Cystic Fibrosis is a life-limiting inherited disorder caused by mutations in the CFTR gene. It leads to the production of thick, sticky mucus that progressively damages the lungs, pancreas, and other vital organs. Globally, the disease affects an estimated 150,000 people and has seen major advances in diagnosis and treatment over recent decades. However, in Pakistan, CF remains significantly underdiagnosed and underreported, largely due to limited awareness, lack of routine screening, and restricted access to specialized diagnostic facilities.

Experts at the session warned that the actual burden of disease in Pakistan is likely much higher than currently documented, as many patients remain undiagnosed or are misdiagnosed with recurrent respiratory or gastrointestinal conditions.

The session was led by Dr. Muhammad Fareed Uddin, Head of Pediatrics at The Indus Hospital & Health Network (IHHN), Karachi, along with a distinguished delegation from the Marmara Cystic Fibrosis Team, Türkiye, including Prof Dr Bulent Karadag., Prof. Dr. Yasemin Gökdemir, Prof. Dr. Özge Keniş Coşkun, Ms. Damla Kocaman, and Ms. Gamze Taştan.

Speaking on the occasion, Dr. Muhammad Fareed Uddin emphasized that a large number of cystic fibrosis patients in Pakistan remain undiagnosed, particularly in rural and underserved areas where awareness and access to specialized diagnostic facilities are limited.

He explained that children presenting with recurrent chest infections, chronic cough, poor weight gain, chronic diarrhea, or persistent respiratory symptoms are often diagnosed late, resulting in irreversible lung damage before appropriate treatment can begin. He stressed that strengthening awareness among healthcare professionals, caregivers, and the general public is critical for timely diagnosis and improved outcomes.

Dr. Fareed further shared that more than 200 patients with cystic fibrosis are currently enrolled in the IHHN I HEAL Cystic Fibrosis Program , where they are receiving structured, multidisciplinary care and long-term follow-up. He added that a significant number of children and adults across Pakistan may still be living with undiagnosed CF due to low awareness and limited diagnostic infrastructure.

He also highlighted that specialized cystic fibrosis care was previously largely unavailable in Pakistan, forcing many families either to seek treatment abroad or remain without proper management. However, he noted that Indus Hospital & Health Network is now providing comprehensive CF care completely free of cost, including diagnostics, medications, nutritional support, pancreatic enzyme therapy, physiotherapy services, and access to advanced treatment pathways.

“Cystic fibrosis treatment is extremely expensive globally and places a heavy financial burden on families. At IHHN, we are ensuring that no child is deprived of care due to financial constraints,” he added.

Dr. Fareed also pointed out the absence of a national cystic fibrosis registry in Pakistan, which makes it difficult to determine the true burden of disease. Available estimates suggest a prevalence of approximately 1 in 10,000 in high-risk populations, but experts believe the actual number may be significantly higher due to underreporting and missed diagnoses.

The visiting experts from Türkiye shared their experience in delivering multidisciplinary CF care models, involving pulmonologists, physiotherapists, dietitians, nurses, and specialized care teams. They emphasized that coordinated care significantly improves lung function, nutritional outcomes, and overall quality of life for patients.

The session also highlighted the transformative role of CFTR modulator therapies, including Trikafta, which target the underlying genetic defect responsible for the disease. Experts noted that while these therapies have revolutionized care in high-income countries—benefiting nearly 90% of eligible patients—access remains limited in low- and middle-income countries.

Participants were also briefed on the I HEAL Cystic Fibrosis Program, an initiative of Indus Hospital & Health Network designed to improve early diagnosis, comprehensive treatment, and long-term disease management in Pakistan. Through this program, more than 250 suspected patients have been screened, and a structured care pathway has been established, including specialized clinics, genetic testing, nutritional rehabilitation, and enzyme replacement therapy.

The experts called for urgent national action, including the establishment of a national CF registry, expansion of genetic and diagnostic services, introduction of newborn screening programs, and nationwide awareness campaigns to ensure early detection and timely treatment.

Indus Hospital & Health Network reaffirmed its commitment to advancing care for rare diseases through clinical excellence, international collaboration, research, and continuous medical education. The session concluded with a shared commitment between Pakistani and Turkish experts to further strengthen cooperation and expand awareness and treatment initiatives for individuals living with cystic fibrosis in Pakistan.