Inspired by Patients: The 'Why' Behind an Organization's Commitment to Risk-Taking

Inspired by Patients: The 'Why' Behind an Organization's Commitment to Risk-Taking

Milken Institute Health continues to work with employers across sectors and industries to advance public health priorities. This interview series is part of the Employer Action Exchange, which highlights ways to accelerate turning evidence into action that impacts employees, communities, and businesses. Employers are a community and a critical contributor to advancing public health priorities that protect, support, and advance people, communities, and businesses.

In 2025, Executive Insights is focused on how employers invest in mitigating risk and building resilience for employees, communities, and their business or mission. Sabrina Spitaletta, senior director, Public Health at the Milken Institute, and Sara Johnson Davis, vice president, head of patient advocacy and policy, Fulcrum Therapeutics, sat down to discuss ways leadership within organizations can protect, support, and advance people, communities, and businesses.

Give us an example of resiliency in the workplace (at the individual, business, and/or community level).

I am fortunate to work with the inspiring and resilient sickle cell disease (SCD) community through my role with Fulcrum Therapeutics. There is a reason we call people with sickle cell "SCD Warriors." For decades, they have faced limited treatment options, skepticism from medical professionals, and relentless challenges from a largely invisible rare disease, yet they always push forward with courage, determination, and a commitment to improve treatment options not only for themselves but for the entire community.

In the years I have worked with the SCD community, I have also seen the advocacy, empowerment, and education within this patient population grow tremendously. They have adapted to changes in treatment and also played an active role in educating themselves and advocating for better care. Many patient organizations now have their own clinical research teams, and they are directly involved in conversations about treatment development. They meet with lawmakers in Washington, DC, to advocate for comprehensive care and increased research funding.

At Fulcrum, we are proactively being asked to present our research to the medical advisory boards of patient groups, signaling just how much progress they've made. The community has become stronger, more informed, and more proactive. That, to me, is a lesson in resilience that we can all learn from and be inspired by.

As a leader in your industry/sector, what risks do you currently face, and which ones do you anticipate facing in the future that impact your workforce, business, and surrounding community?

At a small biotech, risk is part of daily life. Everything we do depends on the data from our clinical trials. Setbacks or delays in trials can impact the patient communities we serve and can also mean layoffs for employees.

Yet alongside this uncertainty, there is a unique sense of accomplishment and hope when a trial produces positive data. That data has the potential to change patients' lives for the better, making the risk worthwhile. That sense of purpose fuels me and my team to keep pushing forward, even when the path is uncertain. In biotech, the risks are great, but the potential rewards for patients, employees, and the broader community are greater still.

What actions can employers take to mitigate risk(s) that will protect their employees, businesses, and communities?

From a clinical trial perspective, biotechs focus on securing the best talent, the best science, and a robust quality control process. But more than anything, putting the patient at the center of every decision is essential. Patient voices inform research design, trial implementation, and broader strategic decisions, ensuring that the community is served thoughtfully and effectively.

Could you share an example from your career journey where you prioritized or tapped into your resiliency? And what did that look like?

Over the course of my career, resilience has been essential. One example: In 2023, because of mergers and acquisitions, and downsizings, I had four different employers in one year. But through the ebb and flow of that year, and many other years working in biopharma, I have remained committed to supporting the patient communities I've had the privilege of working with.

I'm honored to be continuing my work supporting SCD patients at Fulcrum. It's that sense of purpose and the relationships I've built within the community that keep me grounded and focused.

For all of the ups and downs in small biotech, and all of the risks, I wouldn't trade this experience for anything. Working closely with rare disease patients and their communities has been deeply rewarding—I truly love what I do.

Brian Kelly

Policy and Government Affairs Leader/Strategist with Senior Level Government, Public Policy and Corporate Lobbying Experience

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Great insights from a strong, experienced leader who understands patients must be at the center of every stage of drug development.

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