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“Stop holding my child’s life to ransom”: parents protest Vertex’s Boston HQ

Updated: Nov 6, 2023

  • Children with cystic fibrosis around the world dying without access to lifesaving medicine priced at $326,000 per patient per year

  • Parents from India, Lithuania & UK ask Vertex “How many billions are enough?”

[NOTE: Photos of the action below press release]

Parents of children with the life threatening hereditary disease, cystic fibrosis (CF), travelled from across the world to stage a demonstration at the global headquarters of Vertex Pharmaceuticals in Boston this morning (31st October). The drug company holds a monopoly on a class of medicines that can transform the lives of patients, but campaigners claim they are abusing that monopoly to maximise profits at the cost of young lives.

The protesters brought written messages from children and young people with the condition from Europe, Africa, Asia, and Latin America. They carried a banner asking “Vertex - how many billions is enough?” and balloons printed with the word ‘ENOUGH’ which they released into the atrium of the Vertex building.

The action was led by 3 CF mums - 2 from countries without access and 1 from a country with access. Prathiba from India and Urtè from Lithuania spoke about their pain and anguish in knowing that a drug exists that could save their child’s life, but is priced beyond reach by the Boston-based corporation. They then staged a “die-in” at the doors of the Vertex building, chanting “Vertex lies, our kids die” in anger at the avoidable deaths of children that are occurring every week.

Pratibha, who has a four year old daughter with CF, travelled from India to Boston to take part. She condemned the actions of the Vertex leadership:

“The last thing I think about at night and the first thing I think about in the morning is ‘How do I save my daughter’s life?’ It is intolerably cruel to know that there is a medicine out there that could mean instead of dying in childhood, she could live a long and much more healthy life. There are tens of thousands of parents just like me. I am here for them as much as my own child, to say to Vertex, these children’s blood are on your hands. Drop your price, drop the patents.”

Vertex has patent monopolies around the world on its CF drugs, known as CFTR modulators, including the best in class Trikafta. The drug’s US list price is $326,000 per patient per year, a price that means no low income country, and only two middle income countries have access to the medicine, leaving tens of thousands of young CF patients to suffer and die unnecessarily.

One of the dozen of messages from CF patients left at Vertex’s offices was this one from 13 year old Egyptian, Omar Mahmoud:

“I’m 13 years old and I have cystic fibrosis. Every day I take a lot of medicines and spend most of my days in hospital. I hope to stop all of these medications and I hope to be well.

Please use my voice to make Vertex listen. I need modulator treatment, please, I want to breathe.”

The action comes ahead of the North American CF Conference in Phoenix, AZ later this week and is part of the global Right to Breathe campaign led by CF patients and families, clinicians, and access to medicines activists. They have been launching challenges to Vertex’s patent monopolies around the world which block generic versions of the medicine being made and sold - helping Vertex to bank annual sales of $8.9bn. Researchers have projected generics could be profitably made and sold for less than $6000.

Urtè Gylienė the parent of a three year old child with CF from Lithuania, an EU country which is still without a reimbursement agreement for Trikafta, called out Vertex executive’s greed:

“We know that these drugs do not have to be this expensive, but at every turn Vertex’s leadership - from the CEO down - has been guided by greed, not saving lives. We have been demanding they charge a fair price everywhere, and drop their patent claims across the developing world but they have consistently prioritised growing their profits and their personal wealth even if it costs the lives of children like my daughter. I am here in Boston to demonstrate my disgust with them in person - and to demand they act to save young CF patients lives. We will keep fighting until every child’s right to life is respected.”

Parents and patients from the global CF community have launched patent challenges and compulsory licence efforts - a flexibility in intellectual property law that allows patents to be suspended in order to enable more affordable generic supplies - in four countries on four continents where Vertex have a monopoly but are not supplying their medicines. Vertex have aggressively fought these actions, including fighting in the South African High Court to block generic supplies reaching patients there.

“After today we’re travelling to the North American CF Conference to link up with US CF parents who are also struggling to afford Vertex’s products.” added Urtè. “Hundreds have been put into serious financial distress because Vertex cut the co-pay support on its medicines. We don’t have much hope that Vertex will do the right thing but I believe in the power of the global CF community and I call on everyone connected to CF to support our demands for health justice and help save our children’s lives from Vertex’s greed.”

Gayle Pledger, who lives in the UK and has a teenage daughter with CF who has been able to access Trikafta, spoke about the need for the global CF community to stand together:

“I am a CF mum who spent years battling against Vertex to get my daughter access to Trikafta. It has changed her life forever. But it would never have happened if it wasn’t for the collective efforts of the UK’s amazing CF community. To know that families around the world are facing similar desperate struggles, whilst watching their children suffer and die, is intolerable. We now need the power and leadership of the CF community on a global scale. If every patient and every family that has access to these amazing drugs stands up for every patient denied them, then we can force change and ensure that everyone, everywhere has access to the medicines that can save their lives. We won’t let those children and young people suffer - and we won’t let Vertex or their profit-driven behaviour stand in our way.”

—- ENDS —-

For interviews with participants and organisers please contact:

Emma Hughes +1 (617) 518-8504

Diarmaid McDonald

For more on the Right to Breathe campaign, see here. Right to Breathe is a collaboration between Vertex Save Us, a global grassroots CF community movement, and Just Treatment, a patient-led campaign group.


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