Kristie Kuhl
Kristie Kuhl

"The cell therapy space today is at the leading edge of medicine, so it is similar to where the biotech industry was 25-30 years ago.”

When Kerry Beth Daly, head of communications, Atara Biotherapeutics, made that comparison while on a panel I moderated at the Fierce Pharma and PR Communications Summit, it inspired ideas about how Health PR pros can navigate the issues of communicating complex science.

New Science Met with a Mix of Awe and Fear

Biotechnology in the early aughts was booming, and the public viewed it with a mix of excitement and anxiety as they wondered about the long-term impacts. Payers went from being concerned with paying for things used by broad populations to concerns about the totality of spending on “specialty drugs.” Today, we see the same questions about how to pay for cell and gene therapy and how these innovations will impact people who take them into the future. We also see the same ethical questions about how to harness new scientific powers that could lead to eugenic decisions. Communicators need to spend time listening to concerns and helping their companies/clients develop policies and messages about the concerns raised.

Importance of Partnership

Cell and gene therapy are team sports, and the relationships between academic medical institutions and companies are vital. Roughly 25 years ago, biotech and academic medical institutions were working together, litigating about royalty rates and posturing about independence. Today, we see cell and gene therapy companies working in close partnership with academic medical institutions from early research through development. Communicators on both sides of the partnership can work together to elevate the importance of the data messages while seeking inclusivity of those who participate, from the institutions and companies to the patients in the trials, caregivers, advocates and the broader patient community. Working together eliminates blind spots in messaging.

Value versus Price

Communicating the value of any medication starts well before price is established. Pipeline and data communications impact the perceived value of all medications. The chief medical officer of a small pharmaceutical company once told me, “A trial is a success if the prescribing community wants it to be.” Even if a clinical trial meets endpoints, if the prescribing community doesn’t have faith in the science or the company, providers are likely to take a wait-and-see attitude before prescribing in the real world. Conversely, if a trial fails to meet its endpoints, but the clinical community had faith in the concept, they will look at subpopulations or different data cuts to confirm their belief.

This confirmation bias is true in pricing. No one likes paying for medications—but communicating the life-changing (and often, lifesaving) nature of cell and gene therapies throughout the development process will convey their value. Bringing the human impact, incorporating personal stories, can translate scientific data into powerful stories of daily life with disease—and its emotional and financial toll.

Twenty-five years ago, some companies decided not to do business in countries that didn’t meet the prices they set for their biotechnology therapies. Today, when Bluebird Bio pulled its gene therapy Zyntelgo, for beta-thalassemia, out of Germany when that country offered roughly half of the Bluebird Bio price, analysts described the withdrawal as a “smart move” in protecting the therapy’s long-term value, noting that very few people in Germany have beta-thalassemia.

However, for the German families of infants with this fatal disease, company valuation doesn’t matter. They won’t care that there aren’t many patients in Germany. They want the solution that Bluebird Bio developed, and communicators must engage in honest, empathetic discussions with companies and clients about people impacted by business decisions.

Communicators do more than share stories with the external world—we also help companies quantify the value and benefit that their scientific innovations provide to patient communities in need and communicate that value to them and the wider health ecosystem, which includes regulators, providers, lawmakers and the wider business community. To do that effectively, we have to learn from the past, reminding our clients and companies about the need to balance their long-term R&D investment goals with patients’ and payers’ concerns. We must also remind them to take into account the harsh reality that their operational decisions have the potential to leave patients out in the cold when treatments are not accessible.

Cell and gene therapies have the potential to change lives. As communicators, we are on the front lines of the effort to ensure that the benefits and positive impacts of all this scientific innovation are understood and that they drive decision-making on behalf of patients first. If we do that, we can help others learn from the past as we build the future.


Kristie Kuhl is managing partner at Finn Partners.