Amy Niles, PAN Foundation

Patient access to treatment remains poor. 

For the second year in a row, patients with chronic conditions rated health plan access a “D,” with nearly half facing insurance-related barriers like high cost-sharing, formulary restrictions, and prior authorization.

Over a third of chronically ill adults have faced treatment access hurdles this year, with many citing rising costs and formulary changes as key issues.

Proposed bills such as the Safe Step Act, Improving Seniors’ Timely Access to Care Act, and HELP Copays Act aim to reduce step therapy delays, reform prior authorization, and curb harmful cost-sharing practices.

When the PAN Foundation released its 2025 State of Patient Access Report scorecard, we found for the second year running that patients living with a chronic condition rated their ability to access treatment through health plans a “D.” In fact, this scorecard dimension received the lowest grade for patients, with almost half (48%) of insured patients who take prescription drugs facing some form of insurance-related barrier to accessing their Rx. For many, these barriers include high deductibles, increased cost-sharing, formulary restrictions, step therapy, and prior authorization.

Insurance-related barriers are on the rise

In June, PAN’s Center for Patient Research led additional polling to determine how prevalent health plan barriers were for patients. We found that:

Since the beginning of 2025, more than a third (35%) of adults with a chronic condition have faced barriers accessing their medication(s)/treatment(s) through their healthcare plan.

Nearly one in three adults (32%) report encountering insurance-related barriers more frequently in 2025 compared to 2024.

Of those, around two in five noted an increase specifically in cost-sharing (40%) or formulary changes for their medication(s)/treatment(s) (37%).

Our polling also pointed to the negative impact these insurance-related barriers have on patient access to care, pointing out the need for these barriers to be addressed.

Among those who have experienced an insurance-related barrier this year, 66% report at least a mild impact on their ability to access their prescribed Rx through their healthcare plan, with more than a third (35%) reporting a severe/moderate impact.

Additionally, for 16% of adults with a chronic condition, this has diminished confidence in their ability to access their medications/treatments through their plan for the rest of the year.

Can legislation help remove barriers for patients?

There are several pieces of legislation that can help address the barriers patients are facing, but we need Congress to act.

Step therapy is a utilization management protocol in which a health plan or pharmacy benefit manager (PBM) requires patients to try insurer-preferred Rx and demonstrate that they do not work before the payer will cover the treatment initially selected by the patient and their provider. The Safe Step Act ensures that employer health plans, including their contracted PBMs, offer an expedient and medically reasonable step therapy exceptions process.

Improving Seniors’ Timely Access to Care Act

The Improving Seniors’ Timely Access to Care Act (H.R. 3514/S. 1816) was recently reintroduced in the House and Senate to codify prior authorization (PA) processes for Medicare Advantage (MA) plans. This bill would, among other things, establish an electronic PA process for MA plans, including a standardization for transactions, and increase transparency around PA requirements.

Copay accumulators allow insurers to accept copay assistance from drug manufacturers, charitable organizations, or even family members without applying them to a patient's cost-sharing limits. As a result, patients are left with a much higher financial burden, making it harder to access the medications they need. The Help Ensure Lower Patient (HELP) Copays Act would:

Require all payments made by or on behalf of a patient—including copay assistance—to count toward deductibles and out-of-pocket (OOP) maximums.

Close loopholes that allow employer health plans to classify certain medications as “non-essential” to avoid counting cost-sharing payments.

Alternative funding programs (AFPs) are offered to employer-sponsored, self-funded health insurance plans to save the insurance company money. With AFPs, health insurance plans may deny coverage for specialty medications and then require patients to choose between enrolling in an AFP or paying in full for the medication. Ultimately, this delays access to medications and increases OOP costs for patients with rare and chronic health conditions. Federal legislation is needed to ban AFPs.

As Congress considers the introduction and passage of key bills that can improve access to care for millions, we all have a part to play. I encourage you to 

, because our collective voices have never been more important.

Amy Niles is chief mission officer at PAN Foundation.

Articles

Why it’s time to act on passing key bills to boost access for millions.


Insurance Barriers Delaying Patient Care

Low Awareness of Financial Assistance Programs. 

Despite the availability of programs to help with out-of-pocket healthcare costs, nearly half of US adults are unfamiliar with them—especially those with lower incomes who could benefit the most.

 A significant portion of people who needed financial assistance didn’t receive it, likely due to a lack of awareness rather than program unavailability or ineligibility.

Patients Want More Support and Resources.

 Most adults and patients with chronic conditions want tools like case managers, question guides, and apps to better understand and access financial assistance programs.

Today, individuals who are both uninsured and underinsured can turn to a variety of programs that offer financial assistance to cover out-of-pocket (OOP) costs for prescription medications. These programs include pharmaceutical patient assistance programs, independent charitable foundations, federal programs such as Extra Help, and more.

However, according to a recent national poll

 conducted by the PAN Foundation’s Center for Patient Research, only one in five US adults (21%) and patients with a chronic condition (24%) report being extremely or very familiar with financial assistance programs. Disappointingly, about one-half of adults polled (49%) reported not being familiar with these programs.

Familiarity with financial assistance programs is critically important, especially when so many people living with life-threatening, chronic, and rare diseases need such assistance. In fact, roughly 30% of US adults and 37% of patients with a chronic condition, according to that national poll, reported needing financial assistance in the past year to help cover OOP healthcare expenses.

Unfortunately, 37% of US adults and 41% of adults with a chronic condition who needed help did not end up receiving financial assistance. Did they not get assistance because it was not available, or did they not qualify? Or did they not get assistance because they were not aware it was even available? Perhaps the answer lies somewhere in between.

Among US adults, 40% reported never hearing about pharmaceutical patient assistance programs or independent charitable assistance foundations. Another 43% reported never hearing about the federal Extra Help Program, also known as the Low-Income Subsidy Program. This program provides assistance to individuals up to 150% of the federal poverty level. Meanwhile, 55% have never heard of the AIDS Drug Assistance Program.

What is most concerning is that individuals with household incomes of less than $50,000—the individuals likely to benefit the most from financial assistance programs—report lower familiarity with financial assistance programs than those with household incomes greater than $100,000. It’s clear more awareness is needed.

Not surprisingly, when looking for financial assistance with their OOP healthcare costs, the first place people turn is the internet (32% for US adults; 31% for patients with a chronic condition). Only about one in four adults turn to their healthcare provider (HCP)—a doctor, nurse, etc.—for information about where to go for help with costs.

And only one in 10 adults turns to their pharmacists, typically trusted sources of health information, for details about financial assistance programs.

Most adults (84%) and patients with a chronic condition (87%) report that a range of resources would help them better understand and navigate financial assistance programs. In the national poll, the most requested resources included:

A list of questions to ask HCPs about financial assistance (29% of US adults; 33% of patients with a chronic condition).

A case manager who could help with assistance (29% of US adults; 33% of patients with a chronic condition).

Online courses to explain assistance programs (22% of US adults; 24% of patients with a chronic condition).

An app to help determine what financial assistance programs one may be eligible for (27% of US adults; 29% of patients with a chronic condition).

Resources that are developed with clear, plain language can go a long way in empowering people to better navigate their healthcare journeys and find the resources they need.

1. 2025 Financial Assistance Programs Research. PAN Foundation. March 2025. 

https://www.panfoundation.org/wp-content/uploads/2025/04/PAN-Foundation-Polling-Results-March-2025-Financial-Assistance-Programs.pdf

Many uninsured and underinsured individuals remain unaware of vital financial assistance programs for prescription costs, highlighting a critical need for increased awareness and resources.

Financial Assistance: Matching Awareness With Action

Healthcare costs, insurance barriers, and medical debt are preventing patients with chronic illnesses in the US from accessing essential treatments and medications. That’s according to the PAN Foundation’s Center for Patient Research State of Patient Access Report initiative.

, released in March, found patients living with chronic health conditions rated the overall state of healthcare access a C (75.2). Overall, more than one in five patients reported that prescriptions are not affordable (23%), and they find it difficult to pay for drugs (22%). In addition, a quarter of patients (25%) said their lives are greatly impacted by the financial toxicity of healthcare costs. It’s clear that change is needed.

Launched in 2024, the State of Patient Access Report gathers insights directly from adults with chronic health conditions through a nationwide survey conducted by The Harris Poll. Survey results are then synthesized and organized across five categories to develop an annual scorecard. Scores are calculated for the total patient population and for various subgroups to identify disparities in access to care.

In addition to an overall score,the 2025 report also highlights the aggregate scores for each category:

Relationship with healthcare professionals = B (84.3)

Affordability of prescription medications = B- (80.8)

Access to treatment through healthcare plans = D- (63.1)

1. Healthcare access and affordability isn’t getting better.

 Compared to the 2024 report, this year’s survey shows little progress in patient access. Most composite measures did not move materially between 2024 and 2025, with affordability of prescription drugs and financial toxicity declining. 

2. Having health insurance does not guarantee access.

Once again, access to treatment through healthcare plans earned a “D-,” the lowest overall grade across all categories. The score fell to an “F” for American Indian/Alaska Native, Hispanic, and LGBTQIA+ patients, highlighting continued differences in health outcomes.

3. Prescription affordability continues to be a challenge.

The Rx affordability score dropped from 82.3 in 2024 to 80.8 this year. Overall, 22% of patients struggled to pay for prescriptions, and 21% could not access needed medications due to cost.

4. Financial toxicity remains a serious issue for many.

 Sentiment fell to a “D+”, from a “C-” in 2024, with 25% of patients significantly affected by healthcare costs. Over half (56%) of LGBTQIA+ respondents reported high financial toxicity, nearly double that of non-LGBTQIA+ respondents (24%).

5. Medical debt is a leading concern among patients. 

New to this year’s report, questions related to the negative impacts of medical debt were included. Two in five respondents (40%) reported having medical debt, with an average of $729. Notably, medical debt is unevenly distributed, with patients of color averaging $983 in debt compared to $584 for patients identifying as white.

This year’s findings show that healthcare access remains a significant challenge for many Americans and there is urgent need for lasting policy solutions. Groups such as the PAN Foundation remain committed to working with policymakers, patients, healthcare professionals (HCPs), and patient advocacy organizations to help break down access barriers.

But we also encourage individual action in this effort, which could look like:

Contacting your policymakers to share your story and ask them to prioritize policies around access and affordability.

As patients, educating yourself about how to better navigate your healthcare journey and available resources.

As HCPs, talking with patients about their access and affordability challenges.

As patient advocacy organizations, keeping abreast of evolving patient opinion and experience, to further emphasize the access challenges they face.

1. 2025 State of Patient Access Report. PAN Foundation. 

https://www.panfoundation.org/state-of-patient-access

A look at the prevailing factors impacting treatment access in 2025.

Healthcare Scorecard from Patients with Chronic Illness

There is no doubt that diversity of those who participate in clinical trials is of utmost importance, but, unfortunately, people of color, females, and those identifying as LGBTQ+ have historically been left out of them. This lack of diversity means we don’t learn enough about the impact potential treatments may have on these communities, meaning a treatment may not be as effective or safe for all communities.

 of nearly 5,000 adults across the US conducted by the PAN Foundation’s Center for Patient Research, more than half (61%) stated that they are interested in participating in a clinical trial in the future. However, when those who have never participated in a clinical study were asked why, the No. 1 reason for all populations is simply that no one had asked them to participate. Specifically, only 22% of people of color and 20% of LGBTQ+ adults say their healthcare provider (HCP) has discussed the option of a clinical trial with them.

Also of note, at least two-thirds report that they would consider participating in a clinical trial if their HCP would have encouraged them, or if they knew the findings would help people who look or identify like them. That’s why improving health literacy about clinical trials, for both patients and HCPs, is critically important. The PAN Foundation recently launched its "Opening Doors to Clinical Trials" national educational initiative,

 which offers three services, all working toward the goal of encouraging people from diverse communities to learn how clinical trials may help them.

Increasing health literacy with digital education.

 The content gives people the knowledge they need to better understand the basics of clinical trials, while also addressing medical mistrust and misconceptions, along with the urgent need for greater participant diversity.

An online clinical trial finder that removes barriers to trial access by providing a streamlined, user-friendly approach to searching for a trial.

Clinical trials can be difficult to navigate alone, which is why navigators can provide one-on-one help by addressing concerns and connecting patients with community resources that can help remove common barriers many may face when accessing clinical trials, such as transportation.

At PAN, we’re dedicated to ensuring everyone has equitable access to the healthcare they need, including clinical trials. We hope to debunk the perception that these communities are hard to reach when it comes to them. What we are finding is they aren’t hard to reach; instead, they are hardly reached. We all must work together to change that.

In 2025, we look forward to expanding our "Opening Doors" initiative event further. Our goal is to reach more patients nationwide, support HCPs with the tools they need to help their patients, expand collaborations with patient and provider groups, and continue to provide patients with real-time support to remove barriers to their access to care.

1. Opening Doors to Clinical Trials Survey: 2024 National Poll. PAN Foundation. 

https://www.panfoundation.org/app/uploads/2024/10/Opening-Doors-to-Clinical-Trials-Survey-2024.pdf

2. Opening Doors to Clinical Trials. PAN Foundation. 

https://clinicaltrials.panfoundation.org/

New engagement approaches can help drive treatment gains in underrepresented communities.
