The Untapped Potential (and Perils) of Patient Advocacy in Drug Development

Patient advocacy. It sounds noble, doesn’t it? Empowering individuals to shape the medicines they desperately need, bringing the human side to drug development, and building bridges between lab coats and living rooms. Yet, for many biotech startups, it feels more like an awkward blind date: full of potential but marred by miscommunication, mismatched expectations, and, occasionally, financial indiscretions.

Let’s be honest—patient advocacy could be biotech’s secret weapon. These groups hold the keys to better trial recruitment, regulatory goodwill, and even new funding streams. But instead of treating them as strategic allies, too many companies ignore them, tokenize them, or worse, muddy the waters with questionable payments. It’s time for a reality check—and maybe a couples' counselor.

Why Biotech Startups Often Swipe Left on Advocacy

1. “We’re Too Busy Trying Not to Die”

Startups are, by nature, perpetually on the brink of collapse. Between chasing venture capitalists, hiring underpaid postdocs, and praying their lead candidate doesn’t fail preclinical trials, patient advocacy feels like an indulgence for companies with actual budgets. For cash-strapped founders, it’s easy to see advocacy as a distraction, not a necessity.

But here’s the twist: advocacy isn’t just nice to have—it’s a potential lifesaver. Advocacy groups can mobilize trial participants faster than any recruitment agency and add credibility to even the most precarious pipeline.

2. “We Can’t Afford That”

There’s a common misconception that engaging with patient groups costs a fortune. Founders imagine gala dinners, plush consulting fees, and demands for perpetual hand-holding. The reality is often simpler: most advocacy groups are eager for genuine collaboration and ask for little beyond transparency and respect.

That said, payments can be tricky territory. Advocacy groups need funding, yes, but when those checks start coming from startups with vested interests, eyebrows are bound to raise.

3. “We’re Scientists, Not Politicians”

Scientists are notoriously bad at human interaction (just ask any postdoc at a networking event). Startups often hesitate to approach advocacy groups because they don’t know how to engage meaningfully. They fear being second-guessed or opening the floodgates to endless requests. Ironically, advocacy groups are often waiting for that very knock on the door, eager to offer insights into what patients actually need.

The Perils of Payments: Funding With Strings

When Payments Go Right

Not all funding is bad. Advocacy groups need resources to operate, and biotech companies can provide that without compromising integrity. When done transparently, these partnerships are mutually beneficial. The Cystic Fibrosis Foundation’s collaboration with Vertex Pharmaceuticals, for instance, was a masterclass in ethical funding. The foundation’s early support led to transformative treatments—and plenty of revenue to reinvest in patient care.

When Payments Go Wrong

But then there’s the dark side. In 2022, pharmaceutical companies contributed €110 million to organizations across the EU, Norway, Switzerland, and the UK. Major firms supported a range of initiatives including advocacy, public campaigns, media projects, and podcasts—raising ongoing concerns about the extent of industry influence.

Several patient groups advocate for treatments produced by their funders, with some pan-European organizations receiving the majority of their funding from pharmaceutical companies. Others promote high-profile drugs while accepting substantial financial support from its manufacturer.

The European Perspective: A Unique Set of Challenges

Brussels: Where Advocacy Meets Bureaucracy

Europe loves its public funding, and advocacy groups are no exception. In 2023 alone, the European Commission spent €9m on patient engagement initiatives. The good news? This money helps underfunded groups survive. The bad news? It also creates dependency, with some groups reluctant to criticize policies that fund their operations.

The Cultural Disconnect

Many European startups, particularly those spun out of academia, view advocacy as an afterthought. Engagement feels like a luxury when the priority is surviving to see Phase II. This cultural gap means advocacy opportunities often go untapped, leaving startups without the community support they desperately need.

Why Startups Should Take Advocacy Seriously

1. They May Open Funding Doors

Advocacy groups can bring access to grants, crowdfunding, and even direct lobbying for public funding. These aren’t token contributions—they can be the difference between a company surviving or shuttering.

2. Credibility in a Skeptical World

Let’s face it: biotech doesn’t have the best public image. Advocacy partnerships lend legitimacy, showing regulators and investors that a company’s priorities align with patient needs, not just profits.

The Big Picture: A Missed Opportunity

Patient advocacy isn’t just window dressing; it’s a strategic asset that biotech startups ignore at their peril. The ethical dilemmas around payments and funding are real, but they’re solvable with transparency and genuine collaboration. Patients aren’t just stakeholders—they’re partners with insights and agency that can accelerate development and improve outcomes.

For startups juggling a hundred competing priorities, advocacy might seem like another thing to manage. But here’s the truth: if you don’t engage with patient groups early, you’ll end up scrambling to fix the fallout later. And in biotech, as in life, it’s always better to build bridges before you need them.