The advocacy group Just Treatment recently published a press release titled ‘BREAKING: Cystic Fibrosis Patients Launch Global Challenge to Vertex Monopoly on CF Drugs.’ Vertex Pharmaceuticals has taken the lead globally in the development of therapies for cystic fibrosis, a rare disease. The company has made great strides in its efforts, and its latest drug, Trikafta, is a true game changer for many patients that are living with the disease. While the treatment holds great promise, the company’s behavior has made accessing the treatment nearly impossible for patients outside of Europe and the United States.

About Cystic Fibrosis

Cystic fibrosis is a type of genetic disorder which can have impacts throughout the body, but it is most characterized by the buildup of abnormally thick, sticky mucus in the lungs. This mucus becomes a fertile breeding ground and habitat for potentially infectious bacteria. Many patients must take antibiotics for much of their lives. This disorder is caused by mutations of the CFTR gene. Symptoms of cystic fibrosis include progressive decline in lung function, lung and sinus infections, coughing up mucus, fatty stool, poor growth, infertility in males, clubbed digits, and digestive problems. Treatment includes antibiotics and medications or procedures intended to maintain lung function. More useful treatments for the disorder have been introduced in recent years. Lung transplant is an option when lung function declines severely. Life expectancy ranges into the 40s and 50s (and potentially beyond) with good care. To learn more about cystic fibrosis, click here.

In the Medical Field, Greed is Deadly

Trikafta retails for a price of around $311,000/year in the US. While this treatment can be covered by insurance in the nation, and is similarly accessible in Europe, Cheri Nel, a patient and investment banker in South Africa, has issued a request to the SA High Court for a compulsory license that would allow for the production and sale of a much less expensive generic version of the therapy. The campaign has also submitted petitions in India, Ukraine, and Brazil in order to suspend the company’s patents to allow for generic production.

In nations without realistic access to cutting edge treatments like Trikafta, life expectancy is cut dramatically short; many patients in India, for example, die in the teenage years due to lack of treatment access. No middle or low-income nation has been able to strike a deal with Vertex that would enable access to Trikafta. The campaign, spearheaded by patients from around the world, is hinging on WTO agreements and laws that intend to prevent intellectual property law from endangering people’s lives.

“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.” – Cheri Nel, cystic fibrosis patient from South Africa

“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.” – Rafaelle Pereira, cystic fibrosis patient from Brazil

“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.” – Pari, mother of a cystic fibrosis patient in India

 To support this campaign a PETITION is now live and can be signed by anyone in any country.