National patient advocacy organizations come together to respond to the HHS blueprint to lower drug prices and reduce out-of-pocket (OOP) Costs

For immediate release

PAN Foundation contact:

Maggie Naples, Acting Director of Marketing and Communications


Washington, DC, (July 17, 2018) – The Patient Access Network (PAN) Foundation, along with 52 of the nation’s leading patient advocacy groups, submitted a letter to the U.S. Department of Health and Human Services (HHS) in response to its Request for Information regarding the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket (OOP) Costs. Collectively, the organizations represent millions of patients who are living with serious, life-threatening, chronic, complex and disabling conditions. The letter is a culmination of the groups’ work in June, when they came together to share perspectives, concerns and recommendations on the Blueprint.

“Patients are the top priority for all of the patient advocacy groups that have signed the letter” said PAN President and CEO Dan Klein. “We agree with HHS that we need to change the system in a way that promotes the development of affordable innovations that improve health outcomes and lower both out-of-pocket cost and the total cost of care.”

We all share HHS’s concern that too many people abandon prescriptions at the pharmacy counter after learning of the OOP expense. The letter states, “When patients cannot afford their therapies, they cannot be adherent to their treatment plans, which can increase the total cost of care for these patients over time. Such an outcome hurts patients, their families and taxpayers—all who bear the burden of the higher cost of care.”

Additionally, the patient advocacy community:

  • Believes that OOP costs should not prevent people from accessing the medications they need. Until all patients have affordable access to necessary therapies, patient assistance programs must continue their critical work of providing much-needed financial support to those who require costly medications to maintain or regain their health, well-being and quality-of-life.
  • Believes there is an opportunity to work together to improve the information that is available to patients. Information provided to support patients as consumers must be meaningful, easy to understand and actionable.
  • Has concerns regarding placing too much responsibility on patients.

The letter addresses a number of important topics, including:

  • The establishment of an OOP maximum in the Medicare Part D catastrophic phase
  • Updating the Medicare Drug Dashboard
  • Potential changes to specialty tiers and number of drugs covered in each category
  • Moving some Medicare Part B drugs to Medicare Part D
  • Potential changes to HHS regulations regarding drug copayment discount cards
  • Smoothing out OOP expenses/addressing the “seasonality” of OOP costs that triggers catastrophic coverage.

The groups caution against HHS undertaking policy changes without evidence-based research. HHS must be confident that any changes it makes will have the intended positive impact on individuals and families, with no unintended consequences that could harm patients and make prescription drugs less affordable and accessible.

Collectively, the patient advocacy community stands ready to work with HHS to implement policies which ensure all patients in need have access to the prescription therapies their healthcare providers prescribe for them.

To read the letter, click here.

For more information please contact Maggie Naples at or 202-661-8082.

About the PAN Foundation:

The PAN Foundation is an independent, nationwide 501(c)3 organization dedicated to providing help and hope to underinsured patients who are unable to afford the out-of-pocket expenses for their prescribed medications. Since 2004, PAN has provided over $1 billion in financial assistance to more than half a million patients who would otherwise be unable to afford their medications. To learn more, visit