PAN Foundation report shows concerning trends for patient access

Amy Niles, the PAN Foundation’s chief mission officer, spoke exclusively with Access Insider about the current state of patient access, the barriers, the value of advocacy, and the need for action.

The PAN Foundation’s 2025 State of Patient Access Report, a research initiative of the PAN Foundation’s Center for Patient Research conducted with support by The Harris Poll, revealed concerning trends in patient access and healthcare affordability through its comprehensive national polling of adults with chronic conditions.

Amy Niles, chief mission officer, PAN Foundation

Niles explained how the report evaluates patient access through five dimensions: overall access to care, relationship with healthcare providers, affordability of medications, access to treatment through healthcare plans, and financial toxicity — which she defines as “the financial side effects of dealing with and caring for a chronic condition.”

While the overall score showed a slight decline from 75.8 in 2024 to 75.2 in 2025, maintaining a “C” grade, the deeper analysis reveals more significant issues.

According to the report, “in a year-over-year comparison, overall access to care, relationship with healthcare professionals, and access to treatment through health plans nudged up slightly, or remained essentially flat, but affordability of prescription medications and financial toxicity declined.”

“We created a rigorous methodology and a weighting system so each of those five dimensions receives its own score and therefore contributes to the overarching score of a “C” for the state of healthcare access for people with chronic conditions. So, when you see that the overarching score dipped a little bit numerically, you have to look at the five dimensions to see which contributed to the decrease in the overarching score,” Niles explained. “In this case, the scores for access to treatment through healthcare plans and financial toxicity both contributed to bringing the overall state of healthcare access score down by several points.”

Affordability and financial toxicity

The report showed two areas of decline in healthcare accessibility metrics. The first concerning trend appeared in prescription medication affordability, where despite maintaining a “B” grade, the numerical score showed a statistically significant decrease from 82.3 to 80.8 year-over-year. Even more troubling was the second metric — financial toxicity — which experienced a more severe decline, dropping from a C- to a D+ with the numerical score falling from 70.7 to 68.8. According to Niles, that dimension contributed most to the overarching score dipping numerically.

“None of what we saw in the report was necessarily surprising, but it was disappointing to see these two scores dip,” Niles said. “As it relates to affordability of prescription medications, so many people live with serious and chronic conditions, or rare diseases, and they often need medications that come with high out-of-pocket costs.”

Regarding financial toxicity, Niles explained that it’s “different from the other dimensions in that it speaks to the total cost of care for patients.” In today's challenging economic climate, patients face a storm of expenses, including rising medication costs, hospital stays, and copays, she noted. All contribute to rising medical debt.

Access to care through healthcare plans and logistical barriers

Patients continue to face barriers to accessing treatment through their healthcare plans, the dimension that continues to receive the lowest scores. “The score for access to treatment through healthcare plans was horrifically low two years in a row, and it emphasizes that just because someone has insurance, it doesn’t mean they have access to care, or they get timely access to the treatment that their healthcare provider has prescribed,” Niles said.

Niles noted that healthcare plans are increasingly implementing policies that create barriers to medication access, leading to mounting concerns about patient care. One trend she’s seeing more is insurance formularies excluding certain medications from coverage and shifting drugs to higher cost-sharing tiers, increasing out-of-pocket expenses for patients.

The data also showed that nearly half of respondents encountered logistical barriers from their healthcare plans, with 30% reporting unaffordable deductibles.

Other logistical barriers include step therapy and prior authorization, Niles noted.

“Step therapy is the requirement that the patient must try a less expensive medication and fail first before they potentially can access the medication their healthcare provider thinks will be the most effective treatment,” she explained. Similarly, with prior authorization, “the patient needs advanced approval for a certain treatment or medication before they can start the treatment their healthcare provider deemed to be the most effective treatment for you.”

“Both step therapy and prior authorization can negatively impact patients. They also consume a lot of time for healthcare providers.”

Niles also pointed out the disparities in access among different demographic groups were identified in the report. “The State of Patient Access initiative looks at different groups and communities with chronic conditions separately,” she said, adding that “across the board, we saw that the grades were much lower for certain groups,” particularly among Black adults and people who identify as LGBTQIA+. People with rare diseases often also experienced worse scores than others.

The rise of alternative funding programs (AFPs)

In our discussion, Niles emphasized how AFPs are increasingly being utilized by employer-sponsored health plans as a cost-cutting measure.

“As an organization, we’re trying to raise awareness around AFPs, because many patients and healthcare providers are not aware of AFPs. Healthcare providers often don’t know how to recognize when their patient is putting through an alternative funding program,” she said.

These programs specifically target specialty medications, particularly expensive treatments required by employees managing serious illnesses, by removing them from health plan coverage.

The premise of AFPs sounds simple to employers: carve out certain medications from the plan, and let a third-party vendor find ways to cover those costs, often by tapping into pharmaceutical patient assistance programs (PAPs) or charitable foundations. Among many concerns related to AFPs is the misuse of healthcare safety net resources.

“Pharmaceutical PAPs and charitable foundations are here to help the people most in need. With alternative funding programs, patients have insurance coverage, but the AFPs are tapping into a safety net and taking away resources from people who really need the care the most,” Niles said.

However, “whatever is not covered by that assistance from the PAP, the employee will have to cover,” Niles said, adding, “to make matters worse, whatever the patient has to pay is not going to count toward their deductible or out-of-pocket costs. And, if they can’t get assistance from the pharma PAPs, then oftentimes they’re sent back to the employer,” who may or may not cover the medication.

The AFP process introduces substantial delays in treatment access. “For some patients, months and months pass while they wait for medications, during which time the patient’s chronic disease continues to progress. These can be life-threatening situations,” Niles said.

While this may seem like a win for the employer’s bottom line, the reality for patients and the healthcare ecosystem is far more complex and concerning. Individuals find themselves in a difficult position: either work with unknown vendors who require extensive personal and financial information or bear the full cost of their medications, according to Niles.

Another issue, Niles pointed out, is how AFPs vendors may resort to importing medications from overseas, introducing safety risks to patient care.

“We’re trying to create awareness among patients and healthcare providers. We’re trying to do more to educate employers and HR professionals, because I don’t think the full picture related to the impact of the AFP on patients is being presented to them,” she said. “At the end of the day, these programs are bad for patients and should be abolished.”

Next steps

The potential for Medicaid cuts represents a looming significant threat, according to Niles, emphasizing that “if there are cuts, millions of people, and their access to care, will potentially, be impacted.”

“Additionally, we are concerned about cuts that have taken place in research and substantial staffing cuts within federal agencies.

In response to these challenges, the PAN Foundation recently launched its “Healthcare is at Risk” grassroots campaign. “Within the first 24 hours, 1,000 messages had been sent to elected officials and 50% customized that letter to share their story, which is phenomenal," Niles shares, adding poignantly, “that just tells me people are hurting.”

To improve patient access, Niles stressed the value of all healthcare stakeholders engaging in advocacy.

“Getting engaged in advocacy, if you’re a healthcare provider or patient or provider group, is critically important,” Niles said. “Equally critical is the involvement of patients in all discussions. We have to put the patient at the center of all our conversations, especially when it comes to policy.”

“Advocacy is powerful. And even though we know getting legislation passed in this environment is challenging, it’s still important that we encourage patients to share their lived experiences with elected officials,” Niles said.

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