New Transparency Rules Force Drug Makers to Disclose Payments to Patient Advocacy Groups Starting 2027

If you’ve ever wondered who funds the groups advocating for specific treatments or diseases—the ones sending out educational materials or pushing for policy changes—this bill is for you. The Open Payments Expansion Act is pretty straightforward: it forces pharmaceutical manufacturers and medical device companies (and their purchasing organizations, GPOs) to publicly disclose the money they funnel to patient advocacy organizations.

Following the Money Trail

Starting in 2027, drug and device makers must report to the government every single "covered payment" they make to a patient advocacy group. Think of this as expanding the existing "Sunshine Act," which already requires reporting payments to doctors, to now include the non-profits that speak for patients. The goal here is simple: transparency. If a patient group is lobbying for a specific drug or treatment, the public gets to know exactly how much money they took from the company that makes it. This helps patients and policymakers assess potential conflicts of interest when these groups weigh in on policy or treatment options.

What Counts as a Payment?

The bill defines a “covered payment” broadly, capturing both direct and indirect transfers of value. A direct payment is easy—a check written straight to the advocacy group. The indirect part is where it gets interesting and a little tricky. An indirect payment is one routed through a third party, like a consulting firm or a grant foundation, but only if the manufacturer required, instructed, or directed that third party to make the payment. This is a crucial detail, as it attempts to close loopholes where companies try to hide funding by using middlemen. For the average person, this means less chance of industry hiding its tracks when funding groups that are supposed to be independent voices for patients.

Who Is Being Watched?

The law specifically targets “patient advocacy organizations.” These are defined as 501(c)(3) non-profits focused on providing education, support, or advocacy for patients and caregivers, usually around a specific medical condition. This definition is intended to capture the groups most visible in the healthcare debate. On the other side, the pharmaceutical companies and GPOs will face a new compliance burden, having to track and report these payments annually. While this is a win for transparency, those advocacy groups that rely heavily on industry funding might face public scrutiny, which could potentially change how they operate or receive funding in the future.

The Takeaway for Everyone Else

Why should you care? Because patient advocacy groups often play a huge role in shaping public opinion and policy regarding diseases and treatments, from diabetes to cancer. Knowing who is funding their operations gives you essential context when reading their materials or hearing their testimony. This bill doesn’t stop the funding, but it puts a spotlight on it. It’s about giving you, the consumer and taxpayer, the information you need to decide if the advice or advocacy you’re receiving is truly independent or if there’s a financial interest involved. It’s a step toward making the complex world of healthcare finance a little more visible to the people who actually use the system.