PAP 2025: The Unfinished Work of Healthcare Reform

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: Are there emerging models of charitable giving or patient assistance that you believe could redefine financial access to care in the coming years?

James: Redefining access to care is a significant task—one that thousands of people have worked on in the United States for a long time. I believe there are numerous hurdles that need to be addressed. We've evaluated various policy changes that could meaningfully improve accessibility for people with these needs. However, achieving a laser-focused agreement remains challenging.

One piece of legislation that has brought significant change in recent years is the Inflation Reduction Act, which limited out-of-pocket expenses for people on Medicare. If you look at what we call the "Medicaid unwinding" that occurred after COVID—where people were once again required to continually prove eligibility—many individuals lost Medicaid coverage and were left in a vulnerable position. Today, millions of people in this country remain completely uninsured. Addressing these challenges requires overcoming several systemic barriers. The Affordable Care Act (ACA) was a game-changer in many ways, expanding access to commercial insurance, which was a positive development.

On the flip side, many people still don’t know how to navigate the system. They remain hesitant or uncertain, as the healthcare landscape has gone through multiple changes over time. In many states, we’ve seen that when people seek coverage through the marketplace, they initially had three to five plan options—some more competitive than when the ACA first launched. However, in certain ZIP codes, choices have since dwindled to just one plan, and that option is often expensive. Fortunately, subsidies have helped bridge some of the financial gap, but much more work is needed to ensure health insurance remains sustainable and accessible.

According to statistics from the Kaiser Family Foundation, while there is significant focus on high-cost medications, they actually account for only about 13% of total healthcare expenditures in the United States. The real financial burden lies in hospitalization and inpatient care, which make up over 50% of costs. As a result, while high-cost medications receive intense scrutiny, they represent a relatively small portion of overall spending. Meanwhile, hospitalization expenses require greater attention and cost-reduction efforts.

The system is complex in many ways, but if we can ensure people receive the care they need at home—such as timely access to the right prescriptions—the reliance on costly hospital visits would decrease. It's crucial that we continue providing robust financial assistance for individuals in critical care situations who require ongoing access to medications. Doing so will help prevent hospitalization costs from escalating even further.

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.