How Patient Advocates Engage Payers in Discussing Value

The theme of the Alliance for Patient Access 4th Annual National Policy and Advocacy Summit on Biologics and Biosimilars meeting was all about value, and panelists from the Aimed Alliance and the Partnership to Advance Cardiovascular Health discussed how they used the concept of value in their discussions with payers.

During a session called “Innovative Engagement: Talking With Payers,” moderator Chase Martin, executive director of the Global Alliance for Patient Access, asked his panelists, Stacey L. Worthy, general counsel to the Aimed Alliance, and Ryan Gough, executive director of the Partnership to Advance Cardiovascular Health (PACH), to talk about their work in this area.

“When we think about innovative drugs like biologics and biosimilars, I think value means different things to different people, and it definitely means something different to patients and providers,” said Martin.

“Patients may think of value in terms of quality of life and how the drugs allow them to manage their condition. Payers may think monetary value, both costs and how use will affect their bottom line. I think this is where we see utilization management comes into play.”

Martin asked Gough to talk about his organization’s battle to get proprotein convertase subtilisin/kexin type 9 (PCSK9) inhibitors covered for people with the genetic condition familial hypercholesterolemia (FH), where despite diet and exercise, they are unable to keep their low-density lipoprotein (LDL), or “bad” cholesterol, down.

The injectible biologics, approved in 2015, are more expensive than regular statins (around $14,000 annually) but can reduce cholesterol by 60% when used with metformin.

After hearing about the prior authorizations that were preventing access to PCSK9 inhibitors, PACH partnered with the American Society for Preventative Cardiology, which was already holding town halls about the issue, Gough said. The organizations launched a public relations and advocacy campaign that included a video of the patients’ perspective, radio interviews, letters to the editor, and op-eds.

The video was a “clarion call,” Gough said, and was created to catch the attention of payers and policy makers. The video was geotargeted to YouTube channels popular in the 2 states they were targeting.

Martin asked Gough to explain more about the methodology used to get the campaign’s point across, besides the use of patient stories.

Gough said PACH purchased claims data to see what the rejection was at the state level and the health plan level in both Alabama and Florida. In 2016, 80% to 90% of claims for the PCSK9 inhibitors were rejected in Alabama, he said.

“What we were trying to do, Chase, was create an echo chamber,” through the campaign, Gough said.

Blue Cross Blue Shield in Alabama changed their formulary to include PCSK9 inhibitors for patients with advanced cardiovascular disease as well as FH.

They used the same approach in Florida, with the addition of a letter writing campaign to Florida Blue; they also did a radio tour with a patient with FH, a cardiologist and a clinician for radio shows. Half a million people heard those interviews across the state, Gough said.

They met with the state insurance commissioner, and afterwards Florida Blue ended step therapy and reduced the LDL cholesterol level that patients had to have prior to taking PCSK9 inhibitors before they could be approved for the drug.

Worthy said her organization, the Aimed Alliance, works to protect and enhance the rights of healthcare consumers and providers. She described how it partners with employers and human resource groups to get the attention of payers and also explain why it is in their best interest to manage risk in benefits programs.

Employers have been receptive to their message, Worthy said. “I think it’s because we really do try to speak their language,” she said. By being diligent when choosing a benefits plan, Worthy said, employers can reduce absenteeism, increase productivity, and lower medical expenses.

Getting a law or regulation changed isn’t the end of the process, Martin noted, asking Worthy to explain how her organization ensures that a new regulation is actually implemented.

She said they created a “Know Your Rights” campaign that walks patients through an insurance appeals process; the organization also advocates calling the payer out on Twitter or going to reporters to tell individual stories. If a large enough group of patients are impacted by a specific issue, Aimed will file complaints with state commissioners and attorneys general.

Martin asked about where the concept of value comes in to increase engagement with payers and decrease utilization management barriers.

Ryan noted that cardiologists and patients typically have long-standing relationships, given the nature of cardiovascular disease. What he hears from both doctors and patients is that “that relationship is being violated on a daily basis.”

Aimed has partnered with Society for Human Resource Management to provide accredited professional development about employer and payer issues, as well as on the HR.com platform.

Through both venues, they discuss “why offering comprehensive benefits is in their best interest,” Worthy said.

“For us, it means we can bring a different voice to employers,” she said, both in getting across what their customers are going through and also from the employers' point of view about wanting to decrease costs.