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Non-profit patient advocacy groups, patient groups and others in various parts of the world have come together to launch a community-run buyers' club to access a new generic version of a lifesaving treatment for cystic fibrosis at the North American Cystic Fibrosis Conference (NACFC) in Seattle. Bangladeshi pharmaceutical company Beximco will provide the newly-launched medicine, expected to become available by Spring 2026, said Third World Network (TWN), an independent non-profit international research and advocacy organisation involved in issues relating to development, developing countries.
Triko, a generic version of the triple combination therapy (elexacaftor, tezacaftor and ivacaftor) listed as an essential medicine by the WHO, could extend the life expectancy of a child in twenty-seven years, as it will cost $12,775 for an adult per year and $6,387.50 for a child per year, 96% cheaper than the branded version Trikafta at $325,300, sold by the US company Vertex. Beximco is also separately launching BexDeco, a generic version of ivacaftor, one of the components of Triko, which costs $5 per tablet. The treatment consists of two tablets of Triko and one of BexDeco everyday for adults and 1 Triko and half BexDeco everyday for children.
Cystic fibrosis is a rare genetic disorder that disrupts mucus production in multiple organs, particularly the lungs and digestive system, leading to debilitating symptoms, such as serious chronic respiratory issues and malnutrition. Delayed diagnosis and lack of treatment contribute to an average life expectancy of less than 20 years, it said.
As of now, cystic fibrosis affects an estimated 188,336 people globally, of whom only 60% are diagnosed and just 27% receive treatment. Access remains starkly unequal between developed and developing countries. Data is limited, but a 2024 study estimated 82% of those undiagnosed live in low- and middle-income countries (LMIC), and only one LMIC, against thirty-five high-income countries (HICs), had reported patient reimbursement for Trikafta, added the organisation.
TWN, along with patient groups including Just Treatment in the UK and the global campaign Right to Breathe, approached Beximco with the proposal to develop an affordable generic alternative, in this context, it said.
Chetali Rao, a scientific researcher with TWN, explained, “When a medicine costs more than life itself, it stops being an innovation, it becomes an exclusion. Trikafta can transform a life-threatening disease like cystic fibrosis into a manageable condition. It must be available and we were determined to find a way to make it affordable.”
“As a responsible generic manufacturer, we have always remained firm in our commitment to address the unmet medical needs of patients,” said Beximco in a statement. Beximco's track record also includes the production and free-of-charge dispensation of generic antivirals remdesivir and paxlovid during Covid-19 and sofosbuvir for hepatitis C when prices were prohibitive in most of the world.
Trikafta is poised to be one of the most expensive medicines in the world. Vertex’s monopoly has generated extraordinary profits: $29.5 billion over ten years (2012–2021), almost entirely derived from the sales of medicines for cystic fibrosis. A 2022 study, however, estimated Trikafta could be produced for $5,700 per patient per year. TWN, Just Treatment and Right to Breathe have also filed challenges against Vertex’s patents in India and other countries, seeking to dismantle unjustified barriers, it added.
The Indian Patent Office refused Vertex’s application for a solid dispersion form of tezacaftor last May. The application was rejected under Section 3(d) of the Indian Patents Act, which prohibits the patenting of new forms of known substances unless they demonstrate enhanced efficacy.
"Despite applying for multiple patents, on another front of its aggressive monopoly strategy, Vertex has not registered Trikafta in India in a tactic to delay generic competition and extend its monopoly without any consideration for patients suffering, since the lack of registration does not allow for the marketing of the drug in the country," said the organisation.
Patients, with the support of TWN, Just Treatment and Right to Breathe, have also petitioned the Karnataka High Court seeking to make the drug available under a government use license. The trial has not concluded. Vertex has started compassionate use programs that might be supplying to around 150 patients in India, it said.
EndsPatient groups, supporters form community buyers' club for generic cystic fibrosis drug.
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