BOOTS ON THE  GROUND

Advocating With Hemophilia Patients Locally and Nationwide

It’s not every day that advocacy leaders get to tour a treatment’s manufacturing facility. For the hemophilia community members touring Genentech’s South San Francisco manufacturing plant in December 2016, however, their visit marked an early step in learning more about—and building trust with—Genentech.

“The approach that we take is, from the earliest stage possible,” says Sonali Chopra, Executive Director of Patient Advocacy Relations at Genentech, “we really try to go out, meet the community, understand the advocacy landscape, and understand patient needs before we even start to develop a medicine.”

At Genentech, the patient perspective is paramount to driving advocacy. “You want to build real relationships,” Chopra says. “This is not transactional; this is not a check-the-box exercise. You want to build strong, real relationships so that people will tell you when you’ve done something that they don’t trust or believe in, so that you can fix it.”

Chopra isn’t alone in the mission to advocate on behalf of patients at Genentech. She and her team work with nearly 100 hemophilia and blood disease advocacy groups across the country, at the national and local levels. Together with the Genentech external affairs, ecosystems, marketing, medical, and other cross-functional teams, they work to address key issues for hemophilia patients. Some of these issues include clinical development, patient support services, insurance access, and state and local policy. This mission is starting to show signs of success, according to the patient advocates who rated Genentech #1 spot for Advocacy Relations in the PatientView survey for 2021.

Genentech’s approach is to incorporate the patient voice throughout the entirety of drug development: from clinical trial development through commercial launch, including development of patient services and marketing. In fact, these efforts began when Genentech started to look at working in the hemophilia space.

As an advocacy partner, “you’re leaning on these national and local organizations to really be the supporting service for their local community,” says Gina Truslow, Senior Manager of Patient Advocacy Relations at Genentech, who works directly with the bleeding disorders community. Many of the current initiatives that benefit people living with hemophilia have come from this grassroots approach. For example, when a local advocacy chapter sent a survey to people living with hemophilia, it underscored the need for more of a nuanced focus on older patients: because hemophilia patients are living longer, more patients are having to manage comorbidities now. “That was an unmet need that was found,” Truslow says, thanks to this perspective from the patient community.

In addition to aging and comorbidities, advocacy chapters are prioritizing mental health, women’s health, telehealth, rare and ultra-rare diseases, and future therapies as further needs to be addressed. As a company, Genentech shares many of these priorities including telehealth, rare disease patient needs, health equity, and more inclusive trials.

Any change, of course, starts with the patient. “We must treat patients like experts because they are experts in their lived experience,” Chopra says. “Working with the hemophilia advocates, bringing them to campus, sharing their stories [has caused us to think] differently about what it means to be patient-centric and what it means to listen to the community, especially one as educated and strong as the hemophilia community.” Adds Truslow, “everyone has to learn from the patient in order to understand the needs of the patient.”