Welcome back to the channel.

I want to talk about a topic that's often difficult to talk about,

and that's when patient advocacy organizations take substantial or perhaps even predominant funding from the pharmaceutical industry

and then go out there and claim to represent the voice of patients.

So we're going to get into this.

The first thing we have to acknowledge is patients are the

most important voice at the table of all of biomedicine. We want to know how patients feel, what they

think, about their condition, about drugs, about development, and their voice is the single most important

thing, single most important voice we can consider, more than the policymakers,

more than the regulators, more than the pharmaceutical industry. And I do want to hear from patients. I want to hear from the full range of patients who have a wide range of opinions,

who have a wide range of experiences, and I want to know what they think and what advocacy

they want. Unfortunately, the way we've codified this in the modern system of having

patient advocacy organizations and their funding sources compromises, I think, the fundamental

mission of hearing from patients. So let's go through that. Number one, we did a study,

maybe about a decade ago in the Mayo Clinic proceedings called the industry funding of cancer patient advocacy organizations. And we looked at 68 patient advocacy organizations

that were recommended by a major body, the National Comprehensive Cancer Network. We found

75% of them were funded by the pharmaceutical industry with a median number of sponsors of

seven pharmaceutical firms.

The moment a patient advocacy organization starts to be heavily funded by pharma,

the moment you start to worry that they're actually astroturf, they're actually subverted,

they're actually working for the interest of pharma, even though they may not fully recognize that.

How might that manifest? If the patient advocacy organization, for instance, is very vocal about lowering the regulatory standards of approval, of having a flood of unproven new options,

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