15 Years of Putting Patients First: Top Lessons Learned
By Amy Niles, Vice President of External Relations
For 15 years, the PAN Foundation has put the health and wellbeing of patients first. At our core, we are an advocacy organization that believes out-of-pocket costs for medically necessary treatment should not prevent patients from getting the care they need.
Since our founding in 2004, we have served nearly a million patients. Their shared experience of financial hardship while living with a serious illness has been a driving force for the evolution of our programs.
Early on we learned that people living with life-threatening, chronic and rare conditions need support beyond co-pay assistance. We responded by creating educational tools and resources to help patients better navigate the healthcare system and manage their medical expenses.
Going further, we enlisted the help of national patient advocacy groups and developed partnerships to ensure that those we serve get the comprehensive support they need.
Over the years, we have seen patients—especially those needing specialty medications—continue to endure hardships, even with help of charitable foundations. We quickly realized that legislative and regulatory policy change is the long-term solution to lowering out-of-pocket costs for millions of Americans.
As a result, advocacy has become a critical focus of the PAN Foundation. By working with patient and provider organizations and stakeholder groups, we advocate for the following policies that put patients first:
- A cap on out-of-pocket costs for prescription medications will improve quality of life for patients.
Many people seeking assistance from PAN are seniors living on fixed incomes who need high-cost specialty medications. They need help getting through their initial deductible and coverage phase, and unfortunately, are propelled quickly into the Catastrophic Coverage Phase of their drug plan.
Here, they are responsible for five percent of their drug costs for the rest of the year and may incur thousands of dollars in out-of-pocket costs because there is no cap on these expenses.
Patients often tell us these high costs cause immense hardship and force them to make difficult decisions in order to afford their medications, like using retirement savings, missing mortgage payments or even skipping meals. In addition, patients are plagued with financial and emotional stress that prevents them from focusing on their health.
An annual or monthly cap on out-of-pocket prescription costs will help patients by removing the uncertainty about whether they can access their medications. As seen with patients we’ve served, the ability to afford treatment improves quality of life, reduces stress and provides hope for recovery.
- A more even distribution of out-of-pocket costs throughout the year will help patients start and stay on treatment.
The existing structure of Medicare Part D often requires patients to pay considerable out-of-pocket costs immediately after the start of the year.
This makes it difficult for patients to begin or continue their treatments because many seniors simply cannot afford the large out of pocket costs that they are asked to pay in January alone.
Large upfront costs are barriers to care. PAN supports strategies that help Medicare beneficiaries distribute their out-of-pocket costs more evenly throughout the year. By smoothing these costs, patients may have an easier time accessing and adhering to their treatments.
While we’re proud of our growth over the past 15 years, we know that it mirrors the rising numbers of economically vulnerable seniors who need help paying for their medications. As we collectively work to strengthen and improve Medicare Part D, this growing population will continue to need the support of safety net organizations like PAN.
Moving forward, PAN will continue to identify and respond to the needs of people we serve. While the future of our healthcare landscape remains uncertain, PAN’s commitment to putting patients first will not waiver, and we will continue to advocate on their behalf. Read more about our guiding principles and vision for the future.