Asembia 2025: The Cost of Care for Patients

The afternoon sessions here on day 3 of Asembia continued its impressive slate, with its various business seminars as proof. One of which was centered around “The Cost of Care for Patients: Navigating the Financial Assistance Landscape.”

Moderated by Amy Niles, chief mission officer of the PAN Foundation and Pharm Commerce columnist, she was joined onstage by Sheila Arquette, president and CEO of the National Association of Specialty Pharmacy, along with Elizabeth Johnson, board member and past president of the National Association of Medication Access & Patient Advocacy.

The panel sought to explain the multitude of options available to patients in terms of medication affordability, who may qualify for specific options, and how specialty pharmacies can assist in these efforts.

This session kicked off with a summary of findings, courtesy of the PAN Foundation’s center for patient research. The goal of the seven-minute survey conducted from March 4-6, 2025 was to explore awareness of financial assistance programs and health literacy about healthcare plans. A total of 2,046 US adults age 18 and older participated, with 1,273 of those self-reporting that they’ve been diagnosed by a healthcare provider (HCP) with a chronic condition.

Overall, some of the survey’s findings include that:

• About one in five US adults (21%) and patients with a chronic condition (24%) report being either extremely or very familiar with financial assistance programs.
• About two in five US adults (37%) and patients with a chronic condition (38%) understand their healthcare plan “very well.”
• Eighty-four percent of US adults and 87% of patients with a chronic condition note that a variety of resources would be useful in helping them understand and navigate financial assistance programs and healthcare plans.
• Four in 10 of US adults have never heard of independent charitable assistance foundations or pharmaceutical patient assistance programs; further, those with incomes of less than $50,000 report lower familiarity with most of the tested financial assistance programs, compared to those who earn $100,000 or more.

Given these discoveries, it’s clear that increasing awareness of these programs is critical—educational materials and other resources could prove to be effective in providing access to that knowledge.

Are you surprised by the findings of the report, and what role do you believe specialty pharmacies play in helping patients navigate these challenges?

Arquette for one was not shocked by these results, and empathized with the obstacles that patients must face during these tough times.

“I think it's overwhelming. With respect to specialty pharmacy, I think a lot of these patients have been healthy until the day they're not, and they're thrust into this new world that they have no familiarity with,” she said. “They're trying to navigate the insurance coverage. They're trying to navigate this diagnosis, including with all of the labs—if there's surgery, if there's medications.

“I think specialty pharmacy sits in a really great place because they are able to—with that interaction with the patient, healthcare team, the prescriber, and the provider—understand if this patient has an issue. A lot of these medications are so expensive. Having access to the understanding of what programs are available [is important]. It differs based on the line of business. Medicare beneficiaries can't take advantage of a lot of the pharmacy manufacturer-sponsored programs, so they have to know where to go looking for funds.”

What role—in the absence of the HCP talking about options—does other personnel or staff play in that position?

Spreading awareness begins with stakeholders verifying they have enough facts to disseminate to the patients.

“I feel like hospitals get attention, love, and awareness of programs that I have no clue about in my little, small segment of allergy; I had no idea PAN Foundation existed,” Johnson noted. “I learned about it by accident, digging on the internet. From a clinician practice standpoint, education to the staff is really important. Financial components of healthcare should be in nursing school and medical school.

“I think that starting there would be great because once they hear it, then they tell their patients, and then it becomes the top of the conversation. Print it out, put links on the website, put them in your patient portal. There are so many ways you can direct that, because the office doesn't have time.”

What resources would be most helpful in terms of financial assistance programs?

For organizational purposes, centralized databases could work wonders, especially during a time when patients may feel that they are being bombarded with information from a wide array of sources.

“How do collate all of that information? It’s a lot to put on a patient, so I think providing these resources for specialty pharmacies, educating our members that this is available where you go, you can find that real-time information,” said Arquette. “We are developing the patient resources website again for folks when they're diagnosed with a specialty condition. For a lot of patients, they’re just beginning to dip their toe into that pool of healthcare, so we're going to cover everything, just some of the terms you're going to hear with your insurance company, and what you should ask as we go along.”

In terms of the possibility that the same types of resources are also valuable for the HCP, this is just as important, being that healthcare itself—when it comes down to it—is a business.

“I think that providers and pharmacists need to understand the business side of healthcare too,” concluded Johnson. “They are clinically minded. They are smart as can be. I work with Campbell University to teach billing, coding, and the basics of insurance to physicians in training, so I think that really needs to come back; that really needs to be a part of it and understood. They don't have to be able to repeat it back to me, but they should at the very least have a basic concept of understanding what that business side is, because whether they work in a hospital or private practice, that's going to impact them.”

Reference

Niles A, Arquette S, Johnson E. The Cost of Care for Patients: Navigating the Financial Assistance Landscape.April 30, 2025. Asembia AXS25 Summit. Las Vegas.