SEATTLE, 23 October 2025
Key points:
New generic version of lifesaving treatment undercuts current list price by over $360,000
Buyers’ club model seeks to facilitate action for patients dying without access worldwide due to Vertex Pharmaceuticals’ exorbitant pricing and monopoly abuse
Press conference - Thursday 23 October 2025, 18:45–20:00 PT / Friday 24 October 02:45-04:00 BST / 07:15-09:00 IST - Zoom registration link
A group of mums whose children are living with the genetic disease cystic fibrosis (CF) today launched a community-run buyers’ club to help patients around the world access a new generic version of a lifesaving treatment for the condition. Unveiling the news at the North American Cystic Fibrosis Conference (NACFC) in Seattle, the families announced that the generic version of Trikafta will be priced at just $6,375 per child, per year. This is a huge reduction on the original, patented version, which has a U.S. list price of $370,000, and offers hope to thousands of patients without access.
That extremely high price tag has led to condemnation of the patent holder, Vertex Pharmaceuticals, by campaigners and experts across the world, as it has resulted in deep inequality in access to the treatment. Delayed diagnosis and lack of treatment contribute to an average life expectancy of less than 20 years in CF patients in many parts of the world.
The combination therapy ETI (elexacaftor/tezacaftor/ivacaftor - branded as Trikafta by Vertex) which is now listed as an essential medicine by the WHO, has transformed the health and life expectancies of cystic fibrosis patients able to access it; and generated tens of billions of dollars in profits for Vertex.
Daniela, a CF mum from Ecuador said,
“My son, Juan Martín, was diagnosed as a baby, and since then I’ve fought every day for his chance to live a full life. But in Ecuador, even basic medicines are hard to find. As he’s grown older, his health has declined. The last two years have been filled with hospital visits, constant antibiotics, and procedures to stop him coughing up blood.
He’s eighteen now, he should be out with friends, dreaming about the future, going to university. Instead, every plan he makes depends on what medicines we can get. Until now, he has not been able to get the one medicine that could transform his life - denied it by the greed of an American corporation. Now the launch of the buyers’ club with a much more affordable medicine means finally, his life is not being held to ransom by Vertex Pharmaceuticals. Juan Martin can at last start to make plans for his future.”
Global access gap:
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.
But now, a respected Bangladeshi generic drug manufacturer, Beximco Pharmaceuticals, has confirmed its advanced plans to supply ETI at a price that should make it an affordable and sustainable option for patients and health systems across the world. Their product will enable 58 children to be treated for the price of treating just one child with Vertex’s version.
Known as Triko, it will be available for purchase and supply from Spring 2026. Patients, families, clinicians, and health service employees can register their interest using the CF Buyers’ Club website.
Gayle Pledger works as a Senior Organiser for Just Treatment and leads the global Right To Breathe campaign. She is a CF mum from the UK and announced the launch of the Beximco generic at NACFC today:
“This is a historic moment - patients, families and allies have come together to build the solution that the global CF community has been waiting for. We’ve watched children suffer and die while a treatment sat on the shelf, priced out of reach. Today, that changes, we’ve proven that patient power can change what billion dollar corporations refuse to. Governments must act fast to take all the necessary steps to make this lifesaving drug available for every eligible patient.”
Movement background:
Vertex Save us, a global grassroots campaign, has been fighting for access to modulators for five years. Two and a half years ago, these families of CF patients and their allies formed the Right to Breathe campaign. Led by the CF community and supported by a coalition of groups and allies across the world including Just Treatment, Third World Network, Brazilian Interdisciplinary AIDS Association, Health Justice Initiative, HealthGAP, Medicines Law & Policy, and others, has been working to overcome the monopoly to ensure every eligible patient can access the treatment, pressing courts and governments across the world to tackle the company’s patent abuse.
This work has helped to win full or partial access for patients in Ukraine, India, Brazil, South Africa, Lithuania, and other countries. But many countries are still locked out with patients needlessly dying painful, avoidable deaths.
The campaigners have now announced the launch of a new generic version of the medicine, and the re-establishment of the cystic fibrosis buyers’ club which originally helped to break a deadlock in negotiations over access to Vertex’s modulator treatments in the UK in 2019. The new generic product is significantly cheaper than alternatives, and makes access for many around the world possible for the first time, including in South Africa, where Vertex have been accused of deliberately undermining efforts to secure sustainable access for all by launching an access programme that divides the CF community by only benefiting those on the most expensive private medical insurance plans.
Carmen, a CF mum from South Africa unable to access treatment for her child, helped to relaunch the buyers’ club in Seattle:
“Every parent of a child with CF knows what it feels like to hope for a medicine that is completely out of reach. For years, that hope felt cruel. With Triko, it actually feels real. It gives families like mine a chance to breathe again - to believe that our kids might actually get to live full, healthy lives. That’s all any of us have ever wanted. Vertex’s cruelty to my child and thousands of others like him should stop now. They must step back, drop their patent claims, and ensure they are not preventing patients accessing these lifesaving medicines.”
Triko will cost $12,750 for an adult per year and $6,375 for a child per year, dramatically cheaper than the branded version of Trikafta sold at $370,000 by U.S. company Vertex. Beximco is also separately launching Bexdeco, a generic version of ivacaftor, one of the components of Triko, which costs $5 per tablet.
Patients were the ones who first led Beximco to develop Triko three years ago.
“Seeing the medicines available in the rest of the world and not to us was an added pressure. And India producing ingredients but Indians not having access to the final product was demeaning and depressing,” said Mallika Gollapudi, mother to a 14-year-old child with cystic fibrosis, when she heard the news. "We see a ray of hope now,” she added.
Third World Network (TWN) worked closely with patient groups in India, where access to cystic fibrosis diagnostics and treatment was virtually nonexistent. 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.”
This urgency drove TWN, together with patient groups Just Treatment in the UK and the global campaign Right to Breathe, to approach Beximco with the proposal to develop an affordable generic alternative. The Bangladeshi company has a strong track record of developing and producing affordable medicines, and has secured multiple certificates of Good Manufacturing Practice by stringent regulatory authorities.
Beximco Pharmaceuticals COO, Rabbur Reza, says,
“At Beximco Pharma, we strive to meet patients’ unmet medical needs, especially in therapy areas where there is limited access to affordable products. A central tenet of our business philosophy is responding to the evolving needs of patients to make a meaningful impact on the quality of their lives. We understand that access to medicine for rare diseases, like CF, is restricted due to a limited number of treatment options which are prohibitively expensive. We believe our initiative will deliver a more affordable generic version of Trikafta, which will have a transformative impact on thousands of patients living with CF who are currently deprived of treatment due to the significant cost burden.”
Pathways to access:
Patients and advocates have been highly critical of Vertex’s abusive patenting strategies. This is precisely what makes the initiative alongside Beximco so valuable. Based in Bangladesh, a Least Developed Country (LDC) exempt from enforcing pharmaceutical patents under the WTO TRIPS Agreement, Beximco can legally manufacture and export generic versions of patented medicines.
To enable access in other countries, the Right to Breathe campaign and its allies have filed challenges against Vertex’s patents in India and other countries, seeking to dismantle unjustified barriers. They have also pushed with the South African CF Association and Health Justice Initiative for the South African Competition Commission to properly investigate Vertex’s monopoly abuse in the country.
Some of Vertex's patents over Trikafta have already expired or are near expiry in multiple countries. However, in the last couple of years, Vertex has applied for additional patents on modifications and different forms of these existing compounds to prolong exclusive rights beyond the expiration of the primary patent, a practice known as evergreening.
In a notable development, the Indian Patent Office refused Vertex’s application for a solid dispersion form of tezacaftor, one of the ingredients of ETI, 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, South Africa and a wide range of other global south countries 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.
Patients, with the support of TWN and Right to Breathe, have petitioned the Karnataka High Court seeking to make the drug available under a government use license. The trial has not concluded. To mitigate damages, Vertex has started compassionate use programs that might be supplying to around 150 patients in India, according to patient sources. Similarly, a court action to break Vertex’s patent monopoly in South Africa was ended when Vertex offered an access arrangement that only benefits the half of the CF population with the means to pay for high end private health insurance, deliberately excluding the most vulnerable patients and entrenching health inequalities.
Why this matters:
All of these acts and Beximco's announcement, triggered by patients and civil society advocacy, represents a critical step towards an affordable alternative and wider access, challenging the monopolistic practices that have long restricted life-saving medicines and upholding the right to health.
Further information on how patients can access this product will be available on cfbuyersclub.org from the time of the announcement.
HYBRID PRESS CONFERENCE:
Hyatt Regency Seattle - Cowlitz, Room 502 & Online
Thursday 23 October 2025, 18:45–20:00 PT / Friday 24 October 02:45-04:00 BST / 07:15-09:00 IST
Speakers to include CF parents, access to medicines campaigners, and regulatory expert Dr Joseph Fortunak.
KEY CONTACTS
Diarmaid McDonald - diarmaid@justtreatment.org - +447894455781
Rajnia Rodrigues - rajnia@twnetwork.org - +5521971250691
Simon Conway / Sam Purewal, FTI Consulting on behalf of Beximco Pharmaceuticals - scbeximco@fticonsulting.com - +44 (0)20 3727 1000
AVAILABLE FOR INTERVIEW
Daniela from Ecuador is mother to eighteen year old Juan Martin who has cystic fibrosis. Juan Martin’s health has been declining over the last two years. Daniela is fighting for her son to get access to life saving modulators.
Carmen - mother of a five year old boy with CF in South Africa unable to access treatment
Tanya - is the parent of a girl with CF in India who now has access through the Vertex donation programme, but is still fighting for a sustainable and secure long term mechanism to guarantee patient access
Gayle Pledger is the parent of a child with CF and a leader of the UK fight to win access to CF modulators on the NHS, co-founder of the grassroots group Vertex Save Us, Senior Organiser with Just Treatment and leads the global Right to Breathe campaign.
Diarmaid McDonald is the director of Just Treatment, a patient-led organisation fighting to win health justice for all. He has two decades experience in access to medicines and global health.
Dr Joseph Fortunak is a Professor of Chemistry and Pharmaceutical Sciences at Howard University. Following a career in the pharmaceutical industry where he contributed to the FDA approvals of over 40 new drugs and generic products he now works with organizations including USAID, WHO, UNAIDS, USP, WHO and the Global Fund to promote global access to medicines
K. M Gopakumar is a Senior Researcher and Legal Advisor at Third World Network (TWN) based in New Delhi, India. His work in TWN focuses on the global IP regime and its implications for development.