California transparency debate uses ATTR-CM as its example

A call for greater drug transparency in California has singled out ATTR-CM as an example of how patients can be left without the full picture.

An opinion piece published in International Business Times in September argued that patients should be able to see who paid for the information in front of them, what a medicine can and cannot do, and which commercial relationships sit behind the message. The author cited Pfizer's Vyndamax materials, which direct patients to advocacy organizations, and noted that the company's historical disclosures show a $50,000 grant to an amyloidosis support group in 2016.

The author acknowledged that Pfizer disclosed the funding but argued it should be visible where patients receive information, not buried in old corporate records. The piece also said advocacy groups have questioned Pfizer's description of Vyndamax as the "only" once-daily capsule for the condition.

Drugmakers are not required to report payments to patient groups in the way they report payments to doctors. A KFF Health News investigation found that 14 drugmakers gave at least $116 million to patient groups in 2015 alone.