How Specialty Pharmacies Navigate Charitable Patient Assistance Programs

As specialty drug costs continue to rise, specialty pharmacies are increasingly serving as the first point of contact when patients discover they cannot afford prescribed therapies. In a session at Asembia’s AXS26 Summit, Michael S. Heimall, FACHE, president and CEO of HealthWell Foundation; Kelli Wyant, PharmD, CSP, senior vice president of operations, Amber Specialty Pharmacy; Chuck Collins, MS, MBA, president of Healthcare Stakeholder Solutions; and Alan Klein, chief growth and strategy officer, Patient Advocate Foundation, discussed how pharmacies, charitable foundations, and patient advocates work together to help patients access lifesaving medications.

Independent foundations such as HealthWell and the Patient Advocate Foundation help thousands of patients each year with medication co-payments and insurance premiums, often after patients experience what he described as “co-pay shock” at the pharmacy counter, explained Collins.

Patient stories shared during the session highlighted the stakes involved. One patient described being told a needed medication would cost $17,000 for a 28-day supply, with a personal co-pay of $3200.

“I said, ‘I can't afford that,'“ the patient recalled. “The lady asked if anyone told me about grants to help pay for the medicine, [and] I said no. I was approved for the grant.’ I received the medicine the next day and have been on it ever since.”

Preparing Staff to Respond to Co-pay Shock

Affordability barriers require significant preparation long before a patient calls. Wyant noted that an average specialty pharmacy call lasts about 5 minutes, but calls involving insurance issues run closer to 10 minutes. When co-pay shock is involved, average call times rise to approximately 12 minutes. In January alone, about 60% of calls at her organization related to insurance, and 30% of those involved unaffordable co-pays.

Moreover, frontline staff must quickly determine whether a patient has commercial insurance, qualifies for manufacturer co-pay cards, has government coverage, or may be eligible for charitable assistance.

“All of those nuances in real time—they need to be available to evaluate and then offer that assistance to the patients as well,” said Wyant. “And then that's really when it comes into the foundations and determining which foundation we're going to work with and helping the patient navigate that to the best of our ability.”

Why Foundation Partnerships Matter

Collaboration between specialty pharmacies and charitable foundations is both common and highly regulated, explained Klein. He explained that most assistance programs must operate under strict guardrails, including first-come, first-served processes; income eligibility thresholds; insurance verification; and requirements that medications be FDA-approved or listed in recognized compendia.

“The interactions between the foundations and pharmacies in particular are very robust and happen all the time, but they're also extremely regulated,” noted Klein. “This is probably the most regulated set of foundations that you'll ever interact with on planet earth, and for good reason.”

Patient assistance programs remain a key support tool as underinsured patients struggle with rising out-of-pocket costs, premiums, and coinsurance obligations, according to the Patient Advocate Foundation. The organization reports helping patients navigate access barriers tied to affordability and insurance complexity.

Accumulators, Maximizers, and Access Delays

The panel also addressed growing concern over accumulator and maximizer programs, which can prevent manufacturer co-pay support from counting toward a patient’s deductible or annual out-of-pocket maximum.

Collins said these programs can dramatically increase financial strain for commercially insured patients, forcing some to pay thousands of dollars before coverage fully activates.

“It is huge, it is real, and it hurts patients,” said Collins. “We have a system that's hard enough with high-deductible health plans reaching almost 50% of all the health plans in the commercial space. People can't even have $400 to have on hand to pay for an emergency, and now all of a sudden, I've got to come up with 6500 just so I can get my drug. It's not right.”

Panelists were especially critical of Alternative Funding Programs (AFPs), which may carve certain specialty drugs out of benefit designs and redirect patients through lengthy external assistance pathways.

Collins cited survey findings showing average wait times of 68 days for medications routed through some AFP processes. During that time, 24% of patients reported their condition worsened, while 64% experienced stress and anxiety.

Wyant added that these arrangements can disrupt continuity of care and create confusion for both patients and pharmacies.

Demand for Assistance Continues to Rise

Despite reforms under the Inflation Reduction Act, speakers said the need for charitable support remains strong. Heimall noted that HealthWell expects to award approximately half a million grants this year, up from around 280,000 just a few years earlier.

Moreover, Klein added that the demand at many organizations is increasing 15% to 20% annually.

“The need is not going down; it is going up exponentially for sure,” said Klein. “And Part B, it's untouched, by the way, so Part B out-of-pocket costs are still going higher and higher, disproportionately so.”

A report from the Commonwealth Fund found that 23% of working-age US adults were underinsured despite having coverage all year, while 57% of underinsured adults said they avoided needed care because of cost.² The report also found that up to one-third of people with chronic conditions skipped medication doses or did not fill prescriptions because of expense. The findings underscore why charitable patient assistance programs remain a critical safety net for patients facing high deductibles, coinsurance, and specialty drug costs—even when they have insurance coverage.

Additional research published by KFF found that cost-related medication nonadherence remains a persistent issue, particularly among adults with chronic conditions who report skipping doses, delaying refills, or not filling prescriptions because of cost burdens.³

For specialty pharmacies, that means their role extends beyond dispensing medication. Increasingly, they are financial navigators, educators, and advocates helping patients overcome one of the greatest barriers to treatment access, which is affordability.

References

1. Wyant K, Collins C, Klein A, et al. The role of specialty pharmacies when working with charitable patient assistance programs (CPAPs). Presented at: AXS26; April 27-30, 2026; Las Vegas, NV.

2. Collins SR, Gupta A. The state of health insurance coverage in the US. Commonwealth Fund. November 21, 2024. Accessed April 29, 2026. https://www.commonwealthfund.org/publications/surveys/2024/nov/state-health-insurance-coverage-us-2024-biennial-survey

3. Kearney A, Montavalo III J, Kirzinger A, et al. Public opinion on prescription drugs and their prices. KFF. March 31, 2026. Accessed April 29, 2026. https://www.kff.org/health-costs/public-opinion-on-prescription-drugs-and-their-prices/#9c8e3834-7c6d-497e-a1ea-ea26c7145100