When Adil was only three months old, his mother Ayesha Siddika Mousumi began noticing signs that something was wrong.
He had fat in his stool, suffered frequent colds, coughs and breathing difficulties, and was failing to gain weight. What began as concern over a baby’s health soon turned into a years-long search for answers.
“We noticed problems when Adil was three to four months old. There was fat in his stool, and he repeatedly suffered from colds, coughs and breathing difficulties. When he was seven to eight months old, we realised he was not gaining weight and was losing body fat,” Ayesha told TIMES of Bangladesh.
The family visited doctors, underwent multiple tests and tried different medicines, but the cause of his condition remained unknown.
Adil was tested for cystic fibrosis in late 2020. The first test showed a negative result, but a later test came back positive. In 2022, doctors advised the family to take him to the All India Institute of Medical Sciences (AIIMS) in India, where the diagnosis was confirmed.
For the family, the diagnosis provided an answer but brought a new struggle.
Cystic fibrosis is a chronic genetic disease that requires lifelong treatment, including regular medicines, nebulisation and medical monitoring. Adil had to take several medicines every day and undergo regular nebulisation.
Over time, even the treatment routine became difficult.
“At one point, he became tired of the nebuliser and medicines. He did not want to take them. Then we started researching and trying to find ways to manage the situation,” Ayesha said.
But the biggest challenge was the cost of advanced treatment.
The family learned about Trikafta, a medicine used for cystic fibrosis, but its price was beyond their ability to afford.
“When we learned that Adil had cystic fibrosis, we were devastated. The medicine available for this disease, Trikafta, was unaffordable for a family like ours. His father and I kept wondering how we could keep our child healthy without it,” she said.
A new possibility emerged this year when Beximco Pharmaceuticals launched ‘Triko’, a generic version of Trikafta.
The family contacted the company to obtain the medicine. According to information provided by the family, the annual cost for children is around $6,000, making it more affordable than the previous treatment costs they faced.
“My child is now receiving medicine made in Bangladesh. As a mother, I am very happy that I can now provide the treatment that we could not properly afford for so long. I hope he will be able to lead a normal life in the future,” Ayesha said.
Adil’s father, Mostafizur Rahman, also hopes the treatment will allow his son to return to school, enjoy his childhood and live like other children.
Cystic fibrosis is an inherited disease caused by defects in the CFTR gene. It causes thick mucus to build up in the body, mainly affecting the lungs and digestive system. It can also affect the pancreas, liver, gallbladder and intestines.
Doctors say early diagnosis and regular treatment can help control complications. Treatment may include antibiotics, chest physiotherapy, bronchodilators, steroid inhalers, pancreatic enzymes, vitamin and mineral supplements and long-term medicines when required.
Patients need lifelong care and regular follow-up.
An estimated 162,000 people worldwide have cystic fibrosis, while more than 40,000 people are believed to remain undiagnosed.
Treatment costs remain a major barrier. In the United States, the annual cost of branded cystic fibrosis medicines has been reported to reach around $370,000 per patient. Patient rights advocates say many patients who could benefit from CFTR modulator therapy still do not have access to it.
For Ayesha, access to medicine is not only about her own son.
“For patients and families affected by cystic fibrosis like ours, this is a huge achievement. I hope Beximco will continue producing this medicine and keep the price within everyone’s reach so that families can access it easily,” she said.
For years, Adil’s childhood has revolved around medical tests, daily medicines, nebulisation and uncertainty.
Now, his parents have one simple hope — that treatment will no longer stand between their son and a normal childhood.
“My hope is that everyone in my country affected by cystic fibrosis will get access to treatment and be able to lead a normal life,” Ayesha said.
