When Amy Niles joined the PAN Foundation in 2014, the organization was a financial lifeline—providing grants to help patients afford medications. But she saw an untapped opportunity: what if they could also harness the voices of the hundreds of thousands of patients they served to change the systems that made assistance necessary in the first place? Her answer launched PAN into an entirely new dimension of advocacy work. Today, the organization balances personal patient support with large-scale policy advocacy, mobilizing advocates from every corner of the country to push for systemic change. The result? Real legislative victories and a growing movement of patient voices reshaping healthcare policy at the federal—and increasingly—state levels.
Understanding Advocacy: Two Sides of the Same Coin
When Amy defines advocacy, she describes two equally important approaches. The first is personal advocacy: being your own best advocate, or supporting a friend or family member in navigating healthcare, encouraging them to seek quality care and have meaningful conversations with providers. This is the foundational work that builds individual empowerment.
But the second type—policy advocacy—operates at a different scale. It’s about identifying systemic barriers to access and pushing for legislative solutions that can help not one patient, but millions. “If you’re so fortunate to have those successes, you’re not just helping a patient one at a time, you’re now in a situation where you can potentially help millions of people improve their care, and that’s really impactful and meaningful,” Amy explains.
Both matter. Both require commitment. But they work on different timelines. Personal advocacy can yield immediate results. Policy advocacy? That’s a long game.
The Long Game: A Decade of Advocacy That Finally Paid Off
The PAN Foundation didn’t start with policy advocacy in mind. Founded in 2004, the organization focused entirely on financial assistance—providing grants to help uninsured and underinsured patients access medications. It was vital work. Over nearly 20 years, PAN has helped 1.3 million people access the care they need, providing more than 4.5 billion dollars in financial assistance across 80+ different programs spanning oncology, chronic diseases, and rare diseases.
But when Amy arrived as Director of Alliance Development in 2014, she began asking a crucial question: “Why aren’t we doing more?”
The organization had the relationships, the expertise, and most importantly, hundreds of thousands of patients with lived experience of access barriers. Why not channel that into advocacy work? The answer wasn’t obvious to everyone—including the board.
“We had some board members who said, ‘waste of time, waste of resources. You’re not going to change anything. Why bother?’” Amy recalls candidly. It took education and persistence, but eventually the board agreed to let her build an advocacy program from scratch.
What followed was a deliberate, strategic expansion. PAN started with position statements outlining the organization’s stance on key issues—carefully vetted and board-approved topics that aligned with their mission. They moved to issue briefs, though Amy admits “I don’t think anyone read them.” Eventually, they engaged a government relations firm to help them focus their efforts on specific legislative priorities and began meeting with Congressional offices to introduce PAN and its mission.
But the real turning point came when Amy realized: we need to engage advocates more directly. That’s when PAN’s advocacy program truly transformed.
Building a Movement: From Position Statements to Patient Stories
Today, PAN’s advocacy work operates on multiple levels, each designed to amplify patient voices in different ways.
The centerpiece is their Advocacy Action Summit (formerly called Hill Day), an annual event bringing advocates to Washington DC to meet directly with policymakers. It started small—40 people the first year. Last year, when Tim McDonald participated, it had grown to 65 advocates. This year? 85. “When you’re in a room with 85 advocates who are telling their own story and are so passionate, it’s quite moving,” Amy reflects.
But recognizing that not everyone can travel to Washington DC, PAN created a complementary approach: their grassroots advocacy platform. This digital tool makes it easy for patients anywhere in the country to engage their representatives. Activists can personalize and send messages directly to members of Congress with a few clicks.
The impact has been striking. When PAN launched their “Healthcare is at Risk” campaign in response to threats to Medicare, Medicaid, and federal research funding, nearly 10,000 messages were sent to Congress in just six weeks. Most remarkably, about 50% of those individuals took time to personalize their messages and share their stories. “It says a lot—people are concerned,” Amy notes. “And so we’re grateful that we are able to give advocates a platform to do that because I think oftentimes advocates, individuals don’t know how can I help and is it really going to make a difference?”
Beyond these initiatives, PAN is formalizing an ambassador program—recruiting advocates in every state to serve as ground-level representatives of PAN’s advocacy work. It’s ambitious, but necessary for influencing policy beyond the federal level.
The Proof: Medicare Reforms and the Long View of Advocacy
PAN’s most significant policy victory illustrates exactly why the long game matters.
For roughly a decade, PAN advocated for Medicare Part D reforms. Before 2022, beneficiaries on Medicare faced no cap on out-of-pocket drug costs—meaning some individuals spent $5,000, $10,000, $15,000 or more annually on medications. It was a catastrophic burden that flew in the face of PAN’s mission to make care affordable and accessible.
The organization advocated alongside other patient groups, shared stories from affected patients, educated policymakers about the human impact of uncapped costs. Year after year, nothing changed. The work felt thankless. But PAN kept showing up.
Then, in August 2022, the Inflation Reduction Act passed—and included key Medicare reforms that capped out-of-pocket costs for the first time. “It took us about 10 years,” Amy says. “But it’s funny you mentioned 10 years because that’s kind of when advocacy started at PAN. We advocated for many, many years and ultimately when the Inflation Reduction Act got passed in August of 2022, some of those key Medicare reforms were included.”
This victory didn’t happen because of PAN alone. It was a collective effort by patient advocates, nonprofits, policymakers, and grassroots activism. But PAN’s sustained advocacy—bringing patients’ voices to Congress, educating lawmakers, building relationships over a decade—was part of what made it possible.
“You really do have to have a long view of advocacy and be patient,” Amy emphasizes. “It takes time, it takes telling that story over and over again, but it’s important that we do.”
Why Patient Stories Trump Policy Briefs
One early lesson from PAN’s advocacy work: lengthy policy briefs don’t move the needle. “We spent a lot of time writing very lengthy reports around particular topics that had great content in them, but honestly, I don’t think anyone read them,” Amy admits.
What does move the needle? Patient stories. There’s a crucial difference between a PAN Foundation representative walking into a Congressional office with data, and Tim McDonald—a real patient dealing with real barriers to care—walking in with his lived experience. “It’s one thing for me on behalf of the PAN Foundation to walk into a member’s office and to speak with staff about a policy that’s just not working for patients. But it’s a whole nother thing, Tim, when you go into an office and say, here’s what I’m experiencing with step therapy or whatever the issue might be, and this is how it’s impacting me in a negative way.”
That authenticity resonates with policymakers in a way that even the most perfectly researched brief cannot. It reminds legislators that policies aren’t abstractions—they’re decisions that directly affect their constituents’ ability to afford life-saving medications.
Finding Advocates: Organic Growth and Strategic Recruitment
How does PAN find advocates? There’s no single formula, but several channels work together.
The first, and most natural, is their own patient population. PAN has served hundreds of thousands of people through their financial assistance programs. Many of these individuals have powerful stories about barriers they’ve overcome or continue to face. PAN invites them into the Patient and Family Advisory Council (PFAC), formalizing their role as advocates.
From there, growth becomes increasingly organic. PFAC members know other advocates and naturally bring them along. PAN identifies passionate storytellers at conferences, discovers engaged individuals through social media and their website who are already sharing their experiences. The advocacy network grows naturally through genuine relationships and shared mission.
“No set formula, it kind of organically grows by itself,” Amy says. The key is creating welcoming entry points—whether it’s the Advocacy Action Summit, the grassroots platform, or the emerging ambassador program—so that interested patients can find a way to engage that matches their capacity and interests.
Measuring Impact: Beyond the Obvious Metrics
If measuring policy advocacy impact is difficult, PAN has found ways to track progress without waiting for perfect metrics.
“Ultimately the impact of advocacy is passing a piece of legislation. And so that’s hard. That doesn’t happen every day,” Amy acknowledges. But they also measure success in intermediate ways: the number of patient voices engaged around a specific issue, the number of messages sent to Congress, the depth of relationships built with Congressional offices, the appearance of PAN’s priorities in legislative language.
For Medicare reforms, PAN looks back and sees that while the Inflation Reduction Act didn’t pass because of PAN alone, the organization played a meaningful role in building the grassroots support and patient testimony that made reform politically possible. “We take that as a success,” Amy says. “And so I think the impact ultimately is our ability to push for the policy solutions that we need to improve access to care.”
This is a different kind of measurement than corporate KPIs. It’s not quarterly earnings or conversion rates. It’s: Did we move the needle on this issue? Did patient voices help shape better policy? Are more people able to access the care they need? Those questions take time to answer, but they’re the ones that matter most.
The Dream: Patient Advocates in Every State
If resources were unlimited, what would Amy do? Expand state-level advocacy significantly.
“Every state is different,” she explains. While federal legislation has the advantage of impacting everyone uniformly, state policy is complex and nuanced. Medicaid rules vary by state. Insurance regulations differ. Pharmacy policies diverge. To meaningfully influence healthcare policy across the country, PAN would need advocates on the ground in every single state.
“If money resources were not an issue, that’s what I would do. I would have people on the ground in every single state helping to advance the work of PAN.”
Given recent budget proposals that threaten to shift more healthcare responsibility to states—particularly around Medicaid—this dream is increasingly urgent. States will likely have more control over healthcare policy in coming years. Being present in every state capitol, not just Washington DC, will be essential to advocating for accessible, affordable healthcare.
Three Pillars, One Mission: Financial Assistance, Advocacy, and Education
What makes PAN Foundation distinctive is how it balances three interconnected pillars:
Financial Assistance: Through 80+ programs, PAN provides direct grants covering medications, copays, deductibles, and cost-sharing. Over 20 years, the organization has helped 1.3 million people while providing $4.5 billion in assistance. “I always say, gosh, I wish we didn’t have to do this work, but we do,” Amy reflects. “We’re still probably just scratching the surface of the people who need our help.”
Advocacy: Working to change the policies that create barriers to access in the first place. Medicare reforms, prior authorization restrictions, copay accumulators, step therapy—PAN advocates for systemic solutions.
Education: Helping patients and healthcare providers navigate complex healthcare systems, understand treatment options, and make informed decisions.
These three work together. Financial assistance provides immediate relief but also builds relationships with patients who can become advocates. Advocacy work identifies systemic barriers that inform educational priorities. Education empowers patients to engage in their own healthcare and potentially become advocates themselves. It’s a virtuous cycle focused entirely on the mission: making sure everyone can afford and access the care they need.
The Power of Saying No
One insight Amy shares candidly: advocacy organizations must be willing to say no.
“You got to say no, right? You can’t just take money and not have the transparency for both the funder and for yourself as an organization to be like, ‘Hey, we’re not aligned,’” she emphasizes. Funders might want PAN to focus on specific issues or measure impact in specific ways. But PAN’s leadership needs to maintain clarity about their mission and values.
“There is probably another group that’s aligned, but maybe not us,” Amy explains. This kind of integrity—staying true to mission even when it means declining resources—is what allows advocacy organizations to maintain the trust of both their donors and their patient advocates. It’s harder in the short term. But it pays dividends in the long term.
Getting Involved: Finding Your Role in Healthcare Advocacy
For anyone inspired to engage in healthcare advocacy, PAN Foundation offers multiple entry points:
Visit panfoundation.org to learn about their programs and advocacy initiatives. Join the grassroots campaigns by using their advocacy platform to send personalized messages to Congress. Consider applying for the Patient and Family Advisory Council if you’re a PAN patient with a passion for advocacy. Look for the annual Advocacy Action Summit—an opportunity to meet fellow advocates and engage directly with policymakers in Washington DC. If you’re interested in state-level work, keep an eye out as PAN develops their ambassador program.
Final Thoughts
Amy Niles transformed the PAN Foundation from a vital financial lifeline into something more: a movement. By recognizing that the hundreds of thousands of patients they serve have expertise born from lived experience, PAN created pathways for those patients to become advocates—not just for themselves, but for millions of others facing the same barriers.
The lesson is powerful: organizations that serve patients have an obligation to listen to them, to amplify their voices, and to channel their experiences into systemic advocacy. Personal stories matter. Policy change matters. And combining the two—bringing authentic patient voices to the halls of power—creates change that no amount of research alone could ever achieve.
That’s not advocacy as charity. That’s advocacy as transformation.
