Patient Leader + Thought Leader Conversations, Part 1: The State of Patient Advocacy

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MarlaJan Wexler is a leader among Patient Leaders, sharing her very real and often hilariously profane survivor story as Luck Fupus. In her words, Luck Fupus is about “the girl, the nurse, the patient, the part-time superhero… tales of life with lupus, congenital heart disease, fake boobs, and an out-of-order baby maker.” We can’t imagine anyone better to kick off WEGO Health’s series of Thought Leader interviews – where top Patient Leaders will interview industry experts.

MarlaJan’s inaugural Thought Leader interview is with WEGO Health’s founder and CEO, Jack Barrette, weighing in on the effect of the pandemic on Patient Leaders and the evolution of patient advocacy.

If you’re a Patient Leader with an idea for a Thought Leader interview or a Thought Leader ready to be heard, let us know here.

MarlaJan: How has the pandemic affected the process of patient centricity and engagement?

Jack: In some ways, the pandemic shut down of HCP offices to rep visits has helped to focus industry attention back on patients in general. At WEGO Health, we’re seeing innovative companies thinking hard about how to help patients transition to virtual care, for example, which means more collaboration with patient community leaders to understand what that journey looks like. Pandemic nightmares like “it’s dangerous to go to your doctor” have caused patients, HCPs, and payors to get creative—together.

MarlaJan: How has it affected patient advocacy, in either communication with companies or in access to providers/medications/devices?

Jack: Slamming the door on in-person events has really hurt; some advocacy organizations rely on their annual conference or fundraiser, and opportunities for patients to spend quality time with companies and providers is invaluable. But the silver lining has been the democratizing of so many events that were limited to who could physically travel or who could afford it – now everyone is on the same work-from-home playing field, and for most patient advocates, that’s home-field advantage.
At the risk of cheerleading a global disaster, WEGO Health’s been seeing a really positive surge in companies and providers using web meetings to have more frequent, more collaborative conversations with patient influencers and advocates. Hosting five Patient Influencers in person for a day takes months of planning; hosting the same five on Zoom for an hour can happen six times during those months at a fraction of the cost.

MarlaJan: What has happened over the past few years to advance patient advocacy efforts?

Jack: There has been a movement—and I’m proud to say WEGO Health has been a part of it—to line up patient advocates as peers with HCPs and industry. More than ever before, we’re putting patient advocates at the table as accountable contributors and partners – recognizing their expertise and compensating them for real work. And healthcare companies are seeing the real impact of working side-by-side with patient advocates: better-designed trials getting completed more quickly, patient access issues getting tackled, even marketing becoming more authentic and effective with the help of Patient Influencers. That means patients-as-peers isn’t a fad; it’s the new way.

MarlaJan: Which companies are doing a good job of interacting with patient organizations, and how?

Jack: WEGO Health works a lot with life sciences companies – pharma companies – and there’s tremendous variability. There are a LOT of great things happening, so here are just two examples.

At GSK, their lupus team is deeply committed to that patient community; they work with Patient Influencers to support the whole life of a lupus patient, not just their relationship with a medication. The GSK team spends time talking with Patient Influencers and designs programs with them – a recent standout example is the #WhyITattoo campaign to raise lupus awareness.
Alnylam is a standout in the rare disease space; as a biotech, they’ve built a remarkable patient-centric culture and helped to grow advocacy around porphyria, for example, a condition where patients are just beginning to find each other. A top Alnylam exec was on a panel with me recently, and he told the story of their sales reps delivering medication to patients who could not leave their homes during the pandemic – that job is nowhere in their compensation plan. Still, as a company, they think of the patient first.

MarlaJan: What needs to be done to improve patient advocacy efforts, either on the organization side or the healthcare company side?

Jack: I frequently counsel advocates to share their stories – and the value of working with them. How can your credentials of fighting chronic illness and leading a community of patients help solve real problems for your partners? Don’t be so damned humble!
One consistent piece of advice for companies we hear from WEGO Health Patient Leaders is to avoid the wham-bam-thank-you-advocate approach. If you ask a group of Patient Influencers how to best educate their communities, don’t just get your answers and never call back! The companies that follow up and say “we did this with what your group said” or even “we couldn’t do that because of legal, but we heard you” – those companies are building real trust.

MarlaJan: Describe some of the best moments you have experienced with moving the needle forward in advocacy.

Jack: I have the best job in the world because I get to be inspired by patient advocates daily. There are some life-changers, like our live WEGO Health Awards presentations to 16 of the top Patient Leaders as chosen by their peers and industry judges – I love seeing the patients-are-why-we’re-here needle not just flicker, but get buried like a sound meter at a Guns n’ Roses concert when top healthcare industry presenters can’t hold back tears of gratitude and admiration as they hug the winners. “This is why I do this, why I am in healthcare,” they say.

But right now—this moment—is a best moment for me, too, because MarlaJan Wexler, a powerhouse patient advocate, is leading this very interview, and you’re scheduled to lead an industry panel on this topic. Ten years ago, a patient even attending an industry conference would have been “inappropriate;” 5 years ago, I might have fought to get MarlaJan onto a panel; today, you’re the moderator, you’re the leader, and goddammit that makes my year.

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