Patient Access Network (PAN) Foundation: Helping Underinsured Patients with Rare Diseases Access Treatment and Medications

The inability to pay for essential medical care is not just a significant problem for the uninsured, but also for people who have health insurance. Rising premiums, deductibles, co-pays and coinsurance prevent many people from being able to afford the critical treatment they need.

In fact, 58% of Americans have delayed or gone without essential medical care because of high out-of-pocket costs. According to research from the Kaiser Family Foundation, the average out-of-pocket amount Medicare beneficiaries with cancer, multiple sclerosis, arthritis and hepatitis C spent on their medications in 2019 was $8,100.

To help make a difference, the PAN Foundation is committed to helping underinsured people with life-threatening, chronic, and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.

Since 2004, they have provided more than one million underinsured patients with $4 billion in financial assistance. By partnering with generous donors, healthcare providers and pharmacies, the PAN Foundation helps provide the underinsured population access to the healthcare treatments they need to best manage their conditions and focus on improving their quality of life. 

Our editorial team had the pleasure of sitting down with Ayesha Azam, vice president of Medical Affairs at the PAN Foundation. Below are a few highlights from that discussion.

After a year of severe job market disruption combined with a massive federal pandemic relief effort, it’s important to assess the state of health care coverage and affordability in the United States. Highlights from a recent survey showed that about 10% of adults ages 19 to 64 were uninsured during the first half of 2021, with rates being higher among Latinx/Hispanic and Black adults compared to white adults.

Significantly, more than one-third of insured adults and half of uninsured adults had problems paying medical bills or were paying off medical debt during the prior year. Among those with medical bill and debt problems, 35% used most of their savings, 35% accrued credit card debt, and 27% were unable to pay for basic necessities like food or rent.

The PAN Foundation provides grants to people who are underinsured so they can immediately cover out-of-pocket prescription costs for a covered diagnosis. The organization also advocates for policies that lower out-of-pocket costs and increase healthcare access for people with Medicare and commercial insurance.

The organization works with thousands of pharmacies and providers across the United States that apply for financial aid grants on behalf of their patients. This helps to bridge the gap in care and alleviate the stress and confusion of applying for assistance during difficult times. This level of support is especially critical for patients with rare diseases who require healthcare and specialty pharmacy services.

Understanding the Needs of Rare Patients

Patients with rare disease face higher costs of care related to medications, health equipment, medical tests, specialist visits, hospitalizations health transport, as well as professional caregivers, non-health transport and social services. What’s more, many of them are unable to work or must retire early because of their disease. 

It can be difficult for some rare disease patients to receive high standards of care from doctors within their insurance network, while others are limited to coverage within state lines. Another hidden cost of rare disease is travel for doctor visits, outpatient appointments, clinical research visits, and hospital stays. These patients are also more likely to require more than one prescription medication or specialty medications, with high out-of-pocket costs.

For this reason, the PAN Foundation offers nearly 70 different disease funds that cover a variety of conditions, from different types of cancer to rare diseases. Each disease fund covers all prescription medications, including generic or bioequivalent drugs, that are either FDA-approved or listed in official compendia for the diagnosis. This makes it possible for providers and pharmacies to eliminate delays in the patient taking their prescribed treatment and prevents them from having to make difficult care management choices, such as skipping doses, delaying medication, or putting off doctor appointments.

Increasing Access to Specialty Drugs

When someone is living with a rare disease, they may have multiple health conditions and complications from their treatments. Their doctor may prescribe specific medications to manage symptoms and side effects. Given the high out-of-pocket cost of specialty medications, the PAN Foundation makes it a priority to alleviate that burden and give patients greater peace of mind when they need it most.

PAN Foundation’s Additional Patient Support Services

For many rare diseases, only a few thousand people in the United States exist, and treatment centers and specialists are few and far between. The PAN Foundation partners with national patient advocacy organizations to connect patients with follow-up education and support services in addition to providing financial assistance through specific disease funds. Through these partners, patients can get answers to their questions, access peer support, or find a counselor. Patients can also learn more about their disease and what to expect from treatment.

The PAN Foundation strives to address and mitigate the impact of social determinants of health (SDOH)—conditions where people live, learn, work, and play that affect a wide range of health and quality-of life risks and outcomes—and provide financial assistance in a way that reduces inequities in accessing health care services. To that end, they also provide direct financial assistance for transportation to help people travel to the pharmacy or medical appointments.

Reliable transportation is a huge barrier to care, and many patients must rely on someone else to get to doctor appointments. Direct transportation assistance can reduce that burden and give patients a level of independence. Helping patients achieve better quality of life through access to healthcare services, food insecurity, housing and social support also improves patient medication adherence.

PAN also developed a screening tool for providers and pharmacists to use to help them screen patients for social determinant of health needs, and a web app called FundFinder that allows anyone to sign up and find financial assistance based on their disease. This is helpful because one of the challenges in the industry is that foundations are donation-based and programs often open and close throughout the year, leaving a narrow window to apply. FundFinder helps patients learn about the financial aid programs available to them in a way that has not been possible for many rare disease patients.

The PAN Foundation’s Advocacy Work

The PAN Foundation advocates for policy solutions that increase healthcare access and affordability for both commercially insured and Medicare patients. It develops materials to educate policymakers on topics related to healthcare accessibility, including issue briefs, research and national polling. The PAN Foundation conducts regular outreach to policymakers to promote healthcare accessibility and affordability, including through national coalitions and in concert with other patient advocacy organizations.