Patient groups urged to make drug-industry funding easier to see
Patient advocacy groups in rare diseases such as ATTR-CM are under pressure to disclose industry funding more prominently.
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Patient advocacy groups in rare diseases such as ATTR-CM are under pressure to disclose industry funding more prominently.
Drugmakers must report payments to doctors but not to patient groups. A KFF Health News investigation found 14 drugmakers gave at least $116 million to patient groups in 2015, and some groups received more than half their revenue from the industry.
An IBTimes opinion piece noted that Pfizer's Vyndamax materials direct patients to advocacy organizations, and that Pfizer's own records show a 2016 grant to an amyloidosis support group. The author said the grant was disclosed but should be visible where patients read the information.
Advocates of reform want current funders and amounts shown alongside treatment information, independent medical review and clear labels on sponsored content. The National Council of Nonprofits publishes accountability guidance for charities.
The issue has sharpened as the ATTR-CM market has grown to three approved drugs. Critics say a long-standing sponsor's visibility should not be mistaken for clinical superiority over newer options such as BridgeBio's Attruby.