The Next Chapter

Off to Washington, D.C.

Howard had found her niche. She had her degree. She had crucial early experience under her belt. But she missed the East Coast, and she was ready to pursue law school, so it was time to head to Washington, D.C., where she worked for a leading policy and advocacy firm while attending law school in the evenings. Accompanying her on her move was the man who would become her husband, C.J. Howard. They set out together with all the ambition and youthful energy of 20-somethings to build their professional lives and soon enough, their family.

A fortunate twist of fate sent Howard to a lobbying firm where she worked primarily with organizations focused on health care because the senior person in her department happened to have such clients. During the 10 years that followed, Howard built out her own portfolio of companies, including organizations like the one she now heads.

“I loved working with different patient advocacy organizations and representing clients across the health care spectrum,” she says. “We had lots of patient advocacy clients, but we also had clients from [the pharmaceutical] industry, hospitals, and other health entities.”

Howard’s exposure to both this type of work and the perspectives of the varied stakeholders involved in tackling a health care issue would serve as a building block as she developed her own style and philosophy. Today, she is known throughout the health nonprofit community as a teammate, a collaborator, and a willing listener to all perspectives.

“Throughout my career, I admired Leah as a leading and highly regarded health policy expert and patient advocate,” says Randall Rutta, CEO of the National Health Council. “Leah has always been my go-to resource for thought leadership and strategy to advance patient interests through health systems reform.”

The most important personal influence on Howard’s early career was the tragic death of her mother due to pancreatic cancer. The moment her mom was diagnosed, Howard began to look for an organization that would support and inform the family as they dealt with the disease. She discovered the Pancreatic Cancer Action Network and immediately became involved, seeing firsthand the powerful, focused work that results from an entire community dedicating itself to one particular cause.

As Howard made plans for the next phase of her career, she thought it might be best to focus her efforts on one issue or community, rather than on many clients with varying goals. After a brief stint with a nonprofit, Howard received a job post from a friend in 2012. NPF was hiring a director of government relations. She dove into researching the mission and work of NPF. Her first thought wasn’t about the work, however. She was simply inspired by the fact that there was a patient organization for a disease she personally experienced – Howard had developed psoriasis during law school years earlier.

As she looked deeper into the job and into the organization (headed by Randy Beranek at the time), Howard found that NPF treated policy work and advocacy work as equally important. Beranek didn’t know it then, but he was about to hire the woman who would succeed him after his retirement 10 years down the road.

During the next decade, Howard played an essential role in establishing NPF as a leader in patient advocacy work in Washington, D.C., and in state capitals around the country. She headed up the opening of NPF’s Virginia office in suburban D.C. in 2013, and then she built NPF’s grassroots and state advocacy efforts. In 2014, Howard was promoted to vice president of Advocacy and Government Affairs. Then in 2016, she organized NPF’s landmark Patient-Focused Drug Development meeting with the U.S. Food and Drug Administration (FDA). In 2017, Howard became the chief operating officer.

All the while, Howard listened. She listened to patients, allies, adversaries, and partners. She listened to staff, board members, and her fellow leaders. She listened to the community and continued to take notes on what she might do if one day she had the opportunity to lead NPF. And June 8, 2022 was that day.

Turning the Page

Howard points out that when most internal candidates move into the position of president and CEO – especially at an organization that has been experiencing success and progress toward the mission, as NPF has for decades – change is not the first thing on their mind. Howard looks at her new role not as a new book for NPF but as a new chapter, where what has come before is just as essential as what comes next. NPF will turn the page, carrying with it the momentum and achievements of the past while building speed and accelerating toward its end goals.

“This is a new era for the Foundation, and we will be trying out new things,” Howard says. “I want to keep the best of what we have had at NPF while we push the organization to evolve and grow.”

NPF’s new headquarters in the Washington, D.C., metro area and the new office space for the Portland staff will serve as the settings for the work to come. Howard has spent her time as interim president and CEO from Jan. 1 to early June using a lot of the listening and observation skills she has honed during the past 20 years.

On Jan. 24, Howard hosted the first of what became weekly meetings known as Ask Leah Anything. Although the Monday meeting is optional for all employees, it is common for half or more of the 54 NPF staff to be on the Microsoft Teams video call. It was a key signal – without saying a word – of the kind of transparency, communication, collaboration, and listening that Howard plans to make the hallmark of her time with NPF.

“One of Leah’s great traits is the way she constantly asks for feedback and encourages collaboration. She expects and accepts criticism or dissent. She really prizes the different perspectives of the people around her,” says Katherine Southwick, director of Marketing and Communications for NPF. Southwick has worked with Howard at NPF for five years, and Howard has been Southwick’s supervisor during the latter half of that time.

In the middle of her stint in the interim CEO role, Howard and other NPF leaders conducted a staff survey to better understand what needed improvement and how employees viewed their jobs. The results pointed forcefully to an NPF viewed in a positive light by those working each day toward the mission.

Of course, leading the work in and around NPF offices is only part of the job. As a member of the NPF community for a decade, and as a mother who lives with psoriasis and hopes to free her children from the burdens of chronic disease, Howard says the community and the mission come first for her.

“I sit down with each new staff member and discuss how we must always put the individual living with psoriatic disease at the center of everything we do," she says. "It has been a priority for us, and it will absolutely be a priority for us going forward. I feel particularly honored to be a member and representative of this community. Together, we are all going to play a role in ending the burden of chronic disease."

Because of Howard’s policy and advocacy work, she has seen the power generated by a personal story and always thinks of both the message and the messenger. Howard explains that sometimes, NPF has to help policymakers understand the realities of life with a chronic disease. Other times, NPF is trying to ensure that a pharmaceutical or insurance company understands a complicated issue that impacts the community.

“At the end of the day, the most important messenger is the person impacted by the disease,” she says. “I love that we do our policy and advocacy work together because whether you’re talking to the CDC [Centers for Disease Control and Prevention], the FDA, the NIH [National Institutes of Health], or [Capitol] Hill or state legislature, I think having the patient voice front and center makes us much more effective.”

What’s Next?

Howard’s vision for NPF today and tomorrow is focusing on the long-term, high-impact goals that will realize the dream of curing psoriasis and psoriatic arthritis. She also sees NPF as a leader in the larger endeavor to end the burden of chronic disease. It is an inclusive and highly ambitious vision.

“We sit at a really unique place because from a scientific standpoint, better understanding our disease can do a lot to unlock solutions for people with other diseases,” Howard says. “Additionally, we know that the challenges our community faces when it comes to accessing care and treatment are shared by many other chronic disease communities. When we are talking about step therapy or out-of-pocket costs or copay accumulators – when we bring solutions to those problems, we are bringing solutions to many other problems too.”

It was, perhaps, this creative high-level strategic thinking that helped set Howard apart from the half-dozen other impressive candidates for CEO of NPF.

“Through our work, we likely have the ability to impact so many other diseases and improve lives for so many others who live with a chronic disease,” Howard says. “I think we have a really unique story we can tell about addressing and ultimately ending the burden of chronic disease.”

In the short term, Howard is preparing the organization for the move to D.C. and the new offices in Portland. She is assuming the CEO role as the organization emerges from a tumultuous two years due to the COVID-19 pandemic. Despite the challenges of COVID, NPF continued to advance major research and patient initiatives. And Howard believes strongly that the organization is well-positioned – thanks to the strong support of the community and the knowledge and skills of the staff in place – to accelerate progress toward the mission in the coming years.

As for the future, Howard has already set NPF staff off on an ambitious and bold path forward. As an established leader in the chronic disease community, NPF is uniquely positioned to help bring treatment and support to people impacted by psoriasis and PsA while also delivering solutions for the larger community.

"The more we invest in research and access to care for our community, the more everyone with an illness or a condition can benefit," Howard says. "We're not timid. We are brave. We are going after a cure, and we are going to lessen the many burdens of chronic disease."

Photos by Carrie Kell and Max Taylor