Written by Amy Niles, chief mission officer at the PAN Foundation

There are 25 to 30 million people in the United States living with a rare disease, according to the National Institutes of Health, or roughly the combined population of Sweden, Norway and Finland.

Treating chronic and rare diseases often comes with high out-of-pocket costs, and in the US, even those who have health insurance coverage are worried about the price of managing their health.

A2024 KFF Health pollfound that about 75 percent of adults in the US are worried about affording the cost of healthcare services, with many reporting that an unexpected medical bill of $500 would put them in debt.

These findings highlight a concerning reality in the US. Far too many people are a serious diagnosis away from choosing between critical treatment and their life savings. But there is hope.

Independent charitable patient assistance foundations provide a critical safety net for people with chronic and rare diseases, who, despite their health insurance coverage, need more help. These foundations are often the only source of assistance available to people with Medicare—the US federal health insurance program for people with disabilities and people who are 65 years or older. These foundations often support patients with commercial insurance as well.

As the chief mission officer atthe PAN Foundation,I’ve seen the affordability challenges of the current health system firsthand, and I’ve seen the pure relief when financial assistance eases that burden.

I’m proud to say that over the last 20 years, PAN has provided more than $4 billion in financial assistance to underinsured people with life-threatening, chronic and rare diseases across every US state and territory. And through our education and advocacy efforts, we are working toward a future where everyone has equitable access to affordable care.

How to find financial assistance

The PAN Foundation provides financial assistance to help pay for medication copay costs, health insurance premiums and transportation for a 12-month period. Grant amounts and eligibility requirements vary by fund. There are also options for additional or renewal grants.

We have more than 70disease-specific financial assistance funds,with over 25 rare diseases—from graft vs. host disease to myasthenia gravis and many more. On our website, you can search by treatment or disease, check your eligibility, and apply in just a few minutes. Patients can apply directly, or their loved ones, healthcare provider or pharmacy can apply on their behalf.

The PAN Foundation covers products that are FDA-approved or listed in official compendia or evidence-based guidelines for each disease that we help with, including brand name and generic medications. With copay grants, patients choose which pharmacies and providers they use, as well as what medications in their treatment plan they want to cover.

If a fund is closed, patients or their loved ones or healthcare providers can sign up for PAN’s wait list. When more funding is available, everyone on the wait list who meets the eligibility criteria will get an alert that they can apply.

Damian’s story

Damian Porter has graft versus host disease and was thrilled when his oncologist suggested a new treatment that minimised his symptoms and improved his quality of life. But when his spouse retired a year later and his insurance changed, he was shocked at the change in cost.

“We were blown away upon finding that one single month’s supply of this medication cost more than our combined yearly income,” he said.

He returned to a less effective medication, which included “horrible side effects” like fragile, swollen skin that required daily wound dressing. After he found the PAN Foundation, he was able to afford the treatment that worked best for him.

“This is no small thing,” he said. “I’m very grateful for all that I have been able to do with my life in the past year [without side effects].”

More ways to find financial assistance

The PAN Foundation developedFundFinder, a free website that lets you track more than 200 financial assistance programs across nine charitable organisations, including PAN. Anyone can sign up for real-time email or text alerts when funding is available. To date, we’ve sent more than 1.6 million notifications to alert people about available assistance.

FundFinder also lists nearly 150 advocacy and patient support organisations, connecting patients with additional resources like support groups, clinical trial information, educational resources and more.

Chuck Boyce, a Missouri resident, shared that finding copay assistance was the only way he could afford his medication. He used to call more than 40 foundations and other financial assistance organisations several times a week to see if funding was available. FundFinder eliminated the need for hundreds of weekly phone calls.

More support resources for the rare disease community

Managing a rare or chronic diagnosis takes a village. When patients come to PAN for help, our goal is to connect them with the financial assistance and support they need. Each of our fund pages also tracks available funding at other charitable foundations.

We also have a robustnetwork of partnerswith patient support and advocacy organisations, which cover nearly 50 diagnoses. Our patients can opt in to receive follow-up education and support services, like help finding a specialist or information about new treatments. These services are available to every patient who contacts PAN, even if they don’t become a PAN grant recipient.

Mary-Ellen Harwood came to PAN for help to afford her bipolar medication, but we also referred her to a partner organisation that connected her with a support group. During the Covid-19 pandemic, she said the virtual group helped her feel less alone.

“[The partner organisations] have a lot of resources online, a lot of great articles, and they have peers that you can talk to on the phone or on the computer,” she said. “They understand the journey that I’m on.”

Advocating for greater access to care for all

We also work with other leading patient advocacy groups and coalitions to advocate for critical healthcare reform. We believe that everyone deserves access to affordable, equitable healthcare, but the US isn’t there yet.

Our work educates key decision makers at every level, including federal agencies, Congress and the administration. Patient advocates have been essential in our success, sending more than 20,000 messages to Congress asking for important changes to the Medicare insurance program. I’m proud to say that several of our policy recommendations were signed into law in 2022—expanding access to care for all people living with a chronic or rare disease.

We invite anyone based in the US to learn more about the policies we support andjoin our grassroots team.

Right now, we are focused on legislation that will make healthcare more affordable for people with commercial insurance and make telehealth access permanent for people with Medicare. It only takes a few minutes to participate through our online tool, and every voice has an impact.

Advocacy and education go hand in hand, and we haveseveral webpagesthat help advocates understand the issues.

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Learn more

To learn more about the PAN Foundation or apply for financial assistance, visitpanfoundation.org/find-disease-fund.

About the author

Amy Niles is the chief mission officer for the Patient Access Network (PAN) Foundation, an independent, national 501(c)(3) organisation dedicated to helping underinsured people with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. She leads the organisation’s education initiatives, program development, clinical affairs and advocacy strategy, while overseeing public policy and advocacy initiatives, external relations, and marketing and communications.

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