Advocating on Behalf of Patients

That is the reality for millions of patients today who face high out-of-pocket costs for their prescription medications. High-deductible health plans and the Medicare prescription Part D benefit design force people to pay thousands of dollars before they can fill their prescriptions and begin treatment.

While the safety net provided by the PAN Foundation and similar charities serves a critical need today, long-term, we believe there are strategies that can significantly help patients lower their out-of-pocket prescription medication costs.

That is why a vital part of our mission is to advocate on behalf of patients for legislative and regulatory change that will lower these costs and help people access their treatment without delay.

Our Guiding Positions

The following position statements guide our work in advocating for increased access to healthcare for underinsured patients.

• Out-of-pocket costs should not prevent individuals with life-threatening, chronic and rare diseases from obtaining their prescribed medications.
• Out-of-pocket costs for prescription medications should be spread more evenly throughout the benefit year.
• Out-of-pocket costs for prescription medications should be capped through the use of monthly and/or annual limits.
• Value-based insurance designs that increase access to treatment for individuals living with life-threatening, chronic and rare diseases should be encouraged.
• All conditions should have at least one highly-effective innovator drug on a fixed co-payment tier.
• High front-end deductibles create barriers that can prevent access to treatment for many individuals with life-threatening, chronic and rare diseases.
• Co-pay accumulators or similar programs lead to greater out-of-pocket costs for individuals with life-threatening, chronic and rare diseases and should be prohibited.

Advocacy Highlights

In 2018, PAN collaborated with stakeholder groups to explore the impact of out-of-pocket costs on patients and to discuss potential policy solutions. Additionally, we took new steps to educate people about the impact of these costs, while providing tips on how to better manage and plan for them.

Cost-Sharing Roundtable

We hosted the third annual Cost-Sharing Roundtable in collaboration with the American Journal of Managed Care. The day-long event brought together thought leaders from the private and public sectors to discuss policy solutions and resulted in a final report. Read the Executive Summary and access the full report here.

Response to the Administration’s Blueprint to Lower Drug Prices

In June 2018, with support from 52 patient advocacy groups, PAN submitted a letter to the U.S. Department of Health and Human Services in response to its Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs Request for Information.

Collectively, we agreed that far too many people abandon prescriptions at the pharmacy after learning what they owe out-of-pocket. Our letter asserted that until all patients have affordable access to necessary therapies, patient assistance programs must continue the critical work of providing needed financial support to those who require costly medications to maintain or regain their health, well-being and quality of life. See the press release and full letter here.

Issue Briefs

PAN published a series of issue briefs—in-depth explainers on timely topics related to out-of-pocket costs—to serve as a resource for advocacy groups and thought leaders. From challenges surrounding access to specialty medications to introducing a cap for Medicare Part D beneficiaries’ out-of-pocket costs, these briefs break down complex issues in cost sharing and benefit design. Access the issue brief series here.

Patient Resources

Our healthcare system is complicated and difficult to navigate. Far too often, patients, caregivers and family members are at a loss understanding terminology, insurance design and even where to turn for help. In 2018, PAN took several steps to help fill this information gap:

• We developed factsheets to help patients understand complex aspects of the healthcare system, exploring topics like the structure of high-deductible health plans and co-pay accumulator programs and providing resources to learn more.
• We collaborated with the National Council on Aging to provide information about navigating Medicare Open Enrollment. The article was published by more than 1,000 local and national media outlets, reaching 161 million people.
• President and CEO Dan Klein participated in an extensive media tour sharing tips on how to manage out-of-pocket costs for prescription medicines in 30 radio interviews on stations around the U.S.

Our Commitment to Solutions for Patients

In 2018, we saw increased attention from policymakers on the need to lower drug prices and reduce out-of-pocket costs for patients, especially those needing access to specialty medications. This attention has highlighted the urgency with which policymakers need to address these complex problems of our healthcare system.

We will continue our work with stakeholder groups to ensure patients can access the medications they need and ultimately, experience lower out-of-pocket costs at the pharmacy counter.