An advocacy group called Vertex Save Us is urging Vertex Pharmaceuticals to take steps to address the “fatal inequality” in access to its cystic fibrosis drug, Trikafta, STAT reported.
In a letter addressed to Vertex CEO Reshma Kewalramani, Vertex Save Us wrote that Vertex should provide its cystic fibrosis drugs at affordable prices, offer them on compassionate use basis and issue licenses to generic drugmakers in countries where the drugmaker doesn’t intend to supply the drug in the near future.
“Some of us are lucky enough to be seeing the amazing benefits to health from Vertex… drugs. Others are not and are desperate for access, literally dying waiting,” the group stated in the letter.
Trikafta is a triple combination therapy that is effective in about 90 percent of cystic fibrosis patients, according to STAT.
Vertex Save Us accused the drugmaker of failing to follow human rights guidelines for drugmakers issued by the United Nations to ensure equitable access to drugs, STAT reported.
A Vertex spokesperson told STAT the drugmaker “supports the principles established under the United Nations Universal Declaration of Human Rights which addresses equality of all human beings.”
The spokesperson said Vertex already has a compassionate use program for Trikafta, though Vertex’s website says the program will only be offered in countries where Vertex intends to file for regulatory approval of the drug. The drugmaker declined to say where the drug would be registered, STAT reported.
“We received the letter and will be replying directly. We think it’s appropriate for us to respond to them directly first versus via the press,” the spokesperson said.
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