"South Africans take on big pharma for access to ‘miracle’ cystic fibrosis drug", 18 March 2024

Cheri Nel has a blunt message for the multibillion-dollar pharmaceutical company Vertex: “Any person that dies from today – that’s on you.” Vertex makes a “miracle drug” called Trikafta that can transform the lives of people with cystic fibrosis.

The medication gives them a normal life expectancy, rather than facing the likelihood of dying as young adults, and lives that are no longer blighted by frequent lung infections and hospital admissions...

Nel, 39, is bringing a lawsuit against the Boston-headquartered Vertex in her native South Africa accusing the company of patent abuse and of violating patients’ human rights under the country’s constitution.

The drug costs $326,000 (£255,000) a year for every patient, “which no South African person can afford”, she says. “Maybe not even people in first-world countries can afford that.”

Vertex, which last year reported revenue of $9.87bn, primarily from its cystic fibrosis products, also faces criticism over a lack of access to the drugs or their cost in other countries...

...Nel’s lawsuit accuses Vertex of failing to meet a South African legal requirement to make patented medication “available to the Republic on reasonable terms”. She is seeking the creation of a “compulsory licence” for the drug, allowing generic manufacturers to produce it at a fraction of Vertex’s cost...

Nel hopes that all of the country’s 500 or so CF patients will join her legal battle as co-applicants – about 100 have already come forward expressing support. Half of the patients with the disease in South Africa are children.

Vertex has filed an 800-page response to Nel’s court submission, signalling its intent to fight on multiple grounds...

“At Vertex, we have worked tirelessly for over 20 years to design, discover and develop CF medicines to treat the underlying cause of the disease. Patents provide the necessary incentives to drive research and development investments in areas of unmet medical needs.” [said a company representative]...