PAP 2024: Amy Niles Discusses Goals of the PAN Foundation

PC: Could you describe PAN Foundation’s main objective? How does the non-profit assist with patients’ out-of-pocket costs?

Niles: The PAN Foundation is a national patient advocacy organization and charitable foundation. We are now celebrating our 20th anniversary and at the core of our mission is serving as a very important safety net for people who are underinsured so that they can access the medications they need. When you look at the PAN foundation mission, I like to describe it as three pillars.

The first is the financial assistance, we operate more than 75 different disease programs where we can provide grants to patients who are living with life threatening chronic diseases, and we can cover their out of pocket costs for a 12 month period.

The next pillar is our advocacy work, and we have long advocated for improving access to care for all Americans. There's lots of things to advocate for. We work on our own and we work with many patient advocacy organizations, provider groups, and coalitions on those policy solutions that will make a difference in the lives of patients every single day.

The third pillar is around education. We know we need to do a lot of education around he Medicare reforms that are coming January 1, 2025. But we can do much more than that. We heard a lot this morning at the conference around health literacy and how we really do need to empower patients, individuals who are living with chronic conditions, with the information they need to make informed decisions.

PC: Your position entails spearheading the organization’s relationships and partnerships with the patient advocacy and healthcare provider communities, while taking charge of public policy and advocacy initiatives. Could you describe what the day to day is like?

Niles: Describing the day to day is interesting and challenging, because every single day is different. On any given day, I may be speaking with a member of our patient family advisory council to learn about the challenges he or she may be having accessing the care they need. I may be presenting at a conference of a national patient advocacy organization to educate the patient and healthcare provider community about the Medicare reforms that were implemented as part of the inflation Reduction Act. I may be speaking with staff and an elected officials office to let them know about things like copay, accumulators, alternative funding programs, and how those programs and policies really impede access to the specialty medications that so many patients need every single day. So every day is different for me at PAN, which is why I love the work that I do. I love being able to speak with patients day to day and know the impact that we're having on their lives and the lives of their families. I also love the advocacy work knowing that if we are so fortunate to pass common sense legislation, that can impact millions of patients.

PC: In your latest column for Pharma Commerce to be released in April, you discuss why first-fail policies are harming patients. Without giving too much away, could you expand on that?

Niles: You know, first-fail policies, which are also called step therapies, are a kind of policy that can really prevent access and delay treatment for people who are living with serious illness. Step therapy is when the healthcare professional has prescribed a certain medication, for example, for the patient that they feel is going to be the most effective treatment for that patient. The health care plan may come in and say it's expensive, and we want you to try this medication first and fail-first is a less expensive treatment. Oftentimes, that patient does have to go through that process maybe multiple times before and fail before the insurance company will authorize the treatment that was going to be the most effective in the first place. So we're concerned about this process. Sometimes, it can be appropriate, but many times it is simply delaying treatment for the patient. We advocate for protections for the patients and healthcare providers that can come through the Safe Step Act.