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BREAKING: Cystic fibrosis patients launch global challenge to Vertex monopoly on CF drugs

Updated: Jun 15, 2023


Cystic Fibrosis Patients Launch Global Challenge to Vertex Monopoly on Lifesaving Drugs Press conference today at 8am NY / 1pm London / 3pm Johannesburg

People living with cystic fibrosis (CF), their families, and supporters around the world today launch a coordinated global campaign effort to break the monopoly held by Vertex Pharmaceuticals on life-saving but prohibitively expensive treatments for the disease. Papers were filed with the SA High Court this morning seeking a compulsory licence that would allow - if granted - the supply of more affordable generic versions of the CF drug, elexacaftor/ivacaftor/tezacaftor (Trikafta/Kaftrio). Yesterday petitions to revoke or suspend Vertex’s patents were also submitted to the governments of India, Ukraine, and Brazil.

Cystic fibrosis is a hereditary condition that causes a build up of mucus on the lungs and other organs. Without treatment patients often die in infancy, and life expectancy is just 20.5 years in South Africa, whilst Indian patients typically die in their teenage years. A new class of medicines, however, has revolutionised treatment and significantly extended the life expectancy of patients in a number of high income countries. But Vertex holds intellectual property monopolies on all of these drugs - known as CFTR modulators. The high prices they are demanding, up to USD$326,239 for elexacaftor/ivacaftor/tezacaftor (Trikafta/Kaftrio), have led to controversy across Europe and the US, and huge global inequalities of access. No low or middle income country has been able to agree a deal to enable patients to access the medicine.

Now a global coalition of patients and their families, led by the grassroots CF community group, Vertex Save Us, and the patient-led organisation, Just Treatment, is launching a fight back against the drug company, who they accuse of pursuing a cynical and profit-hungry strategy that sacrifices the lives of tens of thousands of patients around the world in order to enrich corporate executives and investors. But Vertex’s monopoly rights are not absolute - WTO agreements and national laws include a series of flexibilities designed to ensure intellectual property (IP) rights do not threaten citizen’s right to life.

Cheri Nel is a CF patient from South Africa who today submitted papers to the country’s high court seeking a compulsory licence - a form of IP flexibility - on elexacaftor/ivacaftor/tezacaftor (Trikafta/Kaftrio): “Quite simply - if CF patients don’t get access to these drugs, they die. Vertex has priced these medicines so high even western healthcare systems are struggling to pay for them - so patients like me and tens of thousands more in poorer countries don’t stand a chance. They are making tens of billions of dollars yet haven’t lifted a finger to help CF patients around the world. Worse - they have patented their medicines in countries they are not supplying, like South Africa, blocking patients’ access to more affordable generic versions of the drugs in order to protect their profits.

“South African law, and the Constitution are very clear on this. Vertex are denying my right to health. My right to dignity. My right to life. They are committing patent abuse. We are going to the court to put a stop to it. Our country has a proud history of standing up to powerful pharmaceutical corporations to win our citizens access to lifesaving medicines. A compulsory licence will allow CF patients in South Africa to get access to more affordable generic versions of this drug, helping to save the lives of thousands.”

Brazilian CF patient, Rafaelle Pereira, is part of the effort in Brazil to secure a compulsory licence on elexacaftor/ivacaftor/tezacaftor (Trikafta/Kaftrio). A coalition of health groups and organisations representing patients has written to the Brazilian government asking them to take this step to safeguard the lives of patients, like 22 year old Rafaelle.

“My family sold some of their land to be able to buy two boxes (months) of Trikafta for me from Vertex. After that, we found out about a generic supplier in Argentina where Vertex does not have a patent, which is much cheaper. We fundraised in order to buy ten more boxes of the generic version. Thanks to this, I have recently celebrated one year of being on CF modulators. However, that money has also now run out and my family have had to use money from a loan to buy more.

"This is not how my life - or anyone’s life should be valued. Unless Vertex lowers their prices or their monopoly is challenged, patients with CF face a dark future. Some might be able to extend their life by paying out of their own pockets for the drugs, but most will not. Ultimately we will all face the same fate - an avoidable early death at the hands of a greedy pharmaceutical company. I hope the government hears our request and moves to put our lives before the profits of Vertex.”

Pari (not her real name), the parent of a child with CF, has joined a group of Indian parents and patients who have written to the government asking them to revoke Vertex’s patents on CFTR modulator drugs.

“It is horrible to wake every morning knowing there is a medicine that could save the life of my daughter out there, but we can’t help her to get it. Vertex has patented their medicine in India, but priced it so high it is impossible for any family to buy it. This is cruel and wrong. We’ve written to the government and I am hopeful they will agree that Vertex’s monopoly must be cancelled to save the lives of all CF patients in India, including my daughter.” Patients in Ukraine have also taken steps to overturn Vertex’s monopoly, a large coalition of patients, families and Ukrainian civil society organisations writing to the government calling for action to stop Vertex holding patients’ lives to ransom. Their letter also calls for wider actions to address intellectual property barriers to essential medicines in Ukraine, with access to drug supplies significantly impacted by the ongoing invasion by Russia.

This coordinated international effort has been supported by a large number of organisations and individuals including Third World Network, ABIA, ITPC, and SECTION27. The campaign leads, Vertex Save Us and Just Treatment say this is just the start. Gayle Pledger a CF parent, co-founder of Vertex Save Us, and part of the Just Treatment team said: “We had to fight for four years to win access to Vertex’s drugs in the UK. It was only when their monopoly, and the profits it generated, were threatened did we see a deal done. Today is an important and unparalleled step to challenge their monopoly power in four countries on four continents on one day - but we are in talks with patients and families in lots of other countries. This campaign will keep growing until every CF patient, everywhere has access to these lifesaving medicines.” ### ENDS ###

Register here for a global press conference today at 8am NY / 1pm London / 3pm Johannesburg


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