PAP 2025: The Ongoing Challenge for Nonprofit Patient Assistance Programs

Charitable donations have long been a vital lifeline for patients struggling to afford life-saving medications, particularly those with chronic and rare diseases. Over the past few decades, various assistance programs—including nonprofit safety nets, third-party organizations, and manufacturer-sponsored free drug initiatives—have emerged to bridge the gap between medical advancements and patient affordability. However, despite these efforts, high out-of-pocket costs still prevent many individuals from accessing essential treatments. In an interview with Pharmaceutical Commerce, Jonathan James, CEO of Hope Charities, shares insights on reducing barriers to care and improving patient access.

PC: What are the biggest challenges charitable organizations face in sustaining funding and ensuring donations reach the patients who need them most?

James: I think there are two major challenges for a nonprofit organization like Hope Charities. First, there’s always a gap between available resources and the growing need. Every day, we do everything we can to ask for donations, hoping to expand our ability to serve more people.

One major challenge is ensuring the financial sustainability of these programs. Another is educating patients about available assistance in a timely manner. The learning curve in health care is steep, and when it comes to financial aid, it can be even steeper. Our responsibility is twofold: we must educate patients as much as possible while also navigating the reality that funding is often limited. Many programs hesitate to expand outreach because they’re already underfunded, but better funding is exactly what’s needed to serve more people.

I often compare this challenge to riding a bicycle—there are two wheels, and maintaining balance requires shifting pressure between them at different times. For us, it’s about finding the right balance between patient education and donor engagement. Both are equally critical, and improving in both areas is essential for long-term success.

Full Interview Summary: Charitable donations have played a crucial role in helping patients access life-saving medications, particularly those with chronic and rare diseases who face significant financial barriers. Over the past 25-30 years, various assistance programs—including nonprofit safety nets, third-party organizations, and manufacturer-sponsored free drug programs—have emerged to support patients struggling with the rising costs of healthcare. However, despite these efforts, many individuals still face challenges in affording their treatments, with high out-of-pocket costs often preventing them from receiving necessary care.

For conditions like hemophilia, where annual treatment costs can exceed $1 million, losing access to medication can mean a drastic decline in quality of life, forcing patients to rely on disability or face severe health complications. While charitable programs provide critical relief, they also struggle with sustainability due to funding shortages and limited public awareness. Many organizations must balance the need to educate patients about available assistance while ensuring they have enough resources to support those in need.

Healthcare policies such as the Inflation Reduction Act and Medicaid redeterminations have also influenced access to care, sometimes alleviating costs for certain populations while creating new challenges for others. While high-cost medications often receive the most scrutiny, hospitalization and inpatient care account for a much larger portion of healthcare spending. Expanding financial assistance for prescription medications could help reduce hospital admissions and lower overall healthcare costs.

Looking forward, there is a need for more sustainable models of charitable giving and financial aid to ensure that patients can consistently access the treatments they need. Policy reforms, expanded subsidies, and a greater focus on preventative care may help create a more equitable healthcare system while reducing the financial strain on both patients and assistance programs.