PAN Foundation advocacy newsletter: fall 2023

Fall 2023

Dear Liz,

It’s been a month since PAN’s inaugural in-person Advocacy Action Day, but I’m still reflecting on the incredible experience. Our inaugural Advocacy Impact Award recipient, George Valentine, said something that stuck with me.

“I’m not going to change the government tomorrow,” he said. “Everything I do from the advocacy perspective is about changing one thought, one person’s mind, and if I do that, I consider that a success.”

He's absolutely right.

With that in mind, I encourage all of you to keep sharing our campaign page urging Congress to pass three important pieces of legislation that would make telehealth permanent, make all copays count, and address step therapy practices that delay treatment.

Write to Congress

I am grateful that so many of you contacted Congress on our Virtual Day of Action. We need to keep that pressure up in the coming months while these bills are still up for consideration, so please keep sharing and encouraging your networks to act.

We’ll keep it up, one conversation, one email, and one small success at a time.

Kind regards,

Amy Niles

Chief Advocacy and Engagement Officer

Advocacy & action items

Copay accumulator news

We have long been opposed to harmful copay accumulator programs that prevent third-party contributions—like grants from organizations like PAN—from counting toward a patient’s deductible or annual limit.

Recently, the U.S. District Court for the District of Columbia deemed the 2021 Notice of Benefits and Payment Parameters (NBPP) provision that allowed commercial market health plans to implement copay accumulator adjustment policies unlawful. The court has mandated that insurers adhere to the 2020 NBPP federal rule governing health plans, which says copay accumulators are only permissible for branded drugs that have a generic equivalent and only if allowed by state law. Consequently, health plans and PBMs are now prohibited by federal regulation from implementing copay accumulators for drugs that lack generic equivalents.

This was a big victory, and PAN joined a coalition of 86 organizations asking the U.S. Department of Health and Human Services (HHS) to follow suit and issue guidance that will require health insurance issuers to follow the NBPP decision.

Last month, I also co-authored a column for Pharmaceutical Commerce with PAN’s President and CEO Kevin L. Hagan, outlining the harm done by copay accumulators and why they should be banned.

Ask Congress to act

Increasing awareness of harmful AFPs

PAN announced our official opposition to alternative funding programs (AFPs) in June and since then we have been working to increase awareness, educate others about how these programs work, and take a stand when we can.

Health plan sponsors, like employers that fund their own health coverage, may use AFPs to save money by excluding some or all specialty medications from coverage. But while they use AFPs to lower their costs, they are hurting the very patients they should be serving.

I’ll be speaking about how AFPs harm patients and put a strain on safety net programs, like PAN, at the BioNJ Patient Advocacy Summit on November 16.

We encourage patients to talk about their experiences with AFPs. If patients have been told by their employer’s health plan that their specialty medications are no longer covered, or are deemed a “non-essential health benefit,” then they may be involved in an AFP.

Share your AFP story

Research: Medicare reforms will increase adherence

Recent analysis, conducted by Avalere and sponsored by PAN, found that while the Medicare Part D redesign could reduce out-of-pocket costs for non-low-income subsidy beneficiaries in some scenarios and increase prescription uptake, the financial burden will remain acute for many. This is especially true for those within certain therapeutic areas and the most marginalized and underserved populations (e.g., lower-income, Black, and Native American patients).

This study builds on Avalere’s initial research from earlier this year by exploring the potential impact on patients taking medications within eight therapeutic areas.

Learn more

PAN news and resources

This GoodRx story features PAN grant recipient and Patient and Family Advisory Council member Sue Greene, who said PAN’s FundFinder has helped her connect with financial assistance, and she now uses it to help her community do the same.

PAN recently earned some national honors, making Fast Company’s third annual Brands that Matter list, and winning Charity Navigator’s inaugural Community Choice Award. PAN was also honored by the National Association of Specialty Pharmacy.

Dignity. Excellence. Integrity. Intention.