Japan-based Kyowa Kirin might not have the largest footprint in the U.S. — but it’s finding its niche in the specialty and rare disease arena.
Since 2018, the U.S. subsidiary Kyowa Kirin North America (KKNA), which is focused on four core therapeutic areas — nephrology, oncology, immunology, and allergy and neurology, has had three medicines approved by the FDA: Nourianz for symptoms associated with Parkinson’s disease, Sancuso for nausea associated with chemotherapy and Poteligeo for certain cancers, including rare forms of cutaneous T cell lymphoma (CTCL).
In addition to these wins, the company is distinguishing itself by developing deep relationships with patient advocacy groups and patients themselves. Key to achieving this mission is having a patient-centric public affairs strategy. Enter Lauren Walrath, who took on the role of vice president of public affairs in 2019. With a broad range of industry experience at the ready, she went straight work crafting a vision for KKNA’s public affairs operations.
“The role was scoped around leading and building our functions and capabilities for communications and patient advocacy. From a communication perspective, it is somewhat all encompassing. It’s corporate communications, internal and external communications, as well as sharing information through digital channels,” Walrath said. “On the patient advocacy side, it is working with all the disease areas that we support, both from a commercial perspective as well as the patients’ groups that we’re working with, which informs our clinical development programs.”
Walrath recognizes that the power of patient advocacy groups continues to evolve and is eager to tap into their insights.
“There’s a growing recognition in our society that patients’ voices matter in their treatment,” Walrath said. “We are seeing the importance of this now from regulatory agencies, as well as from other groups like those that develop formularies that they need to have a patient perspective in making decisions about treatments. Patient groups are getting more powerful, and that’s because their opinions are being sought and respected, not just by pharmaceutical companies, but by many of the different stakeholders in healthcare.”
In addition to growing her group’s capabilities to support the delivery of medicines, Walrath has her pulse on the increasing importance of health equity, especially in the rare disease space where patients face the additional burden of a difficult “diagnostic odyssey.” Here, Walrath discusses keys to patient engagement, how patient affairs fits into the equation and one program that’s having a measurable impact.
The interview has been edited for brevity and style.
PHARMAVOICE: Can you share what makes for a successful patient engagement program?
LAUREN WALRATH: Recently, we were preparing for an upcoming meeting, and we had several advocates and patients on the call from the different disease areas we work with. We posed the question about patient centricity and what it means to them. Everybody talked about the importance of listening and truly understanding the patient experience. When I think about success of a patient engagement program, it starts from that … by making an effort to reach out to the leaders and the members of different advocacy organizations and starting a conversation about what patients are facing, the challenges they maybe experiencing in getting a diagnosis or managing their treatment — sometimes over long periods of time or even a lifetime.
During these listening sessions, is there a common theme as to what patients want?
It’s interesting. Two of our medicines are in rare diseases and one of our medicines is for a more common disease. But, again, what really stood out is the difficulty of getting a diagnosis, which is obviously common in rare diseases. That’s one of the big challenges we hear over and over again, whether it’s a disease affecting pediatric patients or a disease affecting adult patients — it’s that diagnostic odyssey.
But it’s similar in the other disease areas that we work in, in the sense that once you have the diagnosis, how do you advocate for yourself? And can you get more educated about your disease and treatment options? And then how can you get your physician to really listen to what you’re going through? For many of the patients we work with in the advocacy groups, this (is) what they come back to. The journey feels more difficult when you’re either alone or not listened to or understood. Anything we can do to help patients feel a little less isolated, a little more educated to raise issues with their physicians will hopefully empower them to self-advocate.
How can public affairs provide support to patients and patient groups?
The work we do in public affairs doesn’t necessarily focus exclusively on patients who are on treatment. It is about working with the advocacy groups to ensure that they can offer better support to the patients as well. We do that by trying to sustain or improve education programs, make sure that those education programs are accurate and far reaching.
In many disease areas, it is also important to have an educated or informed caregiver or care partner who is part of the process. We are trying to build a more educated community to try and advance care conversations.
For example, we work in the Parkinson’s space, and through conversations with physicians, KOLs and advocates, we decided to concentrate more on care partners and the role they play in illuminating the symptoms of Parkinson’s disease through appointments and helping the patient adapt to changes in their physical or their cognitive abilities over time.
I understand that health equity is one of your key passions, and the company has a specific program that addresses underserved CTCL patient groups.
CTCL occurs twice as often among African-Americans, and they have a significantly shorter overall survival with the disease compared with patients of European descent.
The company’s work in this space goes back to making sure that when we designed the clinical trials, we had the right investigators and sites involved in the program to make sure we would enroll a representative patient population and have appropriate data to understand the value of our medicine for a representative patient population. We want to continue to replicate across other clinical trials and areas of our pipeline as we go forward.
The CTCL was the inspiration from an outside investigator who was requesting information from our clinical trial to look at more sub-analysis of data related to Black patients. And when we began to talk to that investigator, other KOLs in the space and to the advocacy groups, what came through was that the incidence of CTCL in African American patients is disproportionately higher than it is in other racial groups. And, unfortunately, even though the incidence is disproportionately higher, those patients often are diagnosed later. And this is a rare disease, so many patients go years before they get an accurate diagnosis. And for African American patients in particular, their diagnostic odyssey takes even longer than patients with lighter skin. (So they) suffer worse outcomes because the disease has metastasized and is more difficult to get under control.
That is the root of the issue. We want to help these patients get to a diagnosis faster and get to better care centers where they may recognize the disease more quickly (and where) they know the latest treatments.
Luckily, again, we don’t have to do this alone. Over the years we’ve done social media campaigns to raise awareness, and those partners have shared the content and the information in their own channels. We’ve organized events. Last year, we held a multidisciplinary round table during Black Family Cancer Awareness Week, which is a new effort the FDA sponsored, and was well attended.
Throughout this, we have also made grant funds available to start new translational and epidemiological research to better understand the characterization of the disease in the Black community and to bring more awareness of its incidence. We’ve given grants to health organizations to fund new outreach programs, which we think is incredibly important.
What would you say is one of the biggest challenges for public affairs today?
Because advocacy is increasing in importance in the role it plays from early-stage development through clinical trials to patient education and even policy spheres, it is a broad remit. So, one of the challenges we face is bandwidth and how to be a meaningful player in all those different parts of our business and be a better business partner to those different teams across our organization.
Externally, I would say one of the challenges is that healthcare is political. It’s one of the issues that drives voters to the polls. And I think we live in a world where opinions about healthcare and the politics of healthcare can be quite difficult. So, I think that makes some of these conversations hard — they’ve never been easy, but they’re certainly not getting any easier. So, we must think about the issues, and work with patient and industry groups to concentrate on a few issues that we can truly advance on behalf of patients.
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