Interview 50 pharma CEOs and you’ll hear 50 variations on the same theme: “What distinguishes us is our focus on the patient.” While there’s no overt reason to question anyone’s sincerity, it’s safe to say few of these execs can discuss patient-centricity as empathetically and knowledgeably as Horizon Pharma chief Tim Walbert can — because he is a patient, and has been one for the majority of his professional life.

He was diagnosed years ago with a handful of autoimmune conditions, treating them with drugs like Abbvie’s Humira, which he helped commercialize. “Without those medicines, I wouldn’t be able to do what I do,” he says. “Humira and [Horizon’s] Duexis allow me to get out of bed in the morning.”

There’s a non-small possibility Walbert was Humira’s first commercial patient: He started taking the drug in January 2003, during his tenure as the leader of Abbott Laboratories’ biologics unit. Walbert is so eager to talk about the many patient lives changed by Humira that he undersells the fairly-remarkable-in-hindsight story of the drug’s origins.

See also: Drugmakers battle for slice of Humira’s billions

“At the time, expectations for the [biologics] business were very low. Peak sales expectations for Humira were maybe $750 million 10 years after launch. What are they at now, $16 billion a year?” he says almost casually, before segueing into an emotional discussion of the punishing impact rare diseases have on families.

“Especially with young children, sometimes if you look at the patient, you don’t really see them,” he continues. “It’s easy to make assumptions about what that patient is feeling. I’ve always tried to remember that what you don’t see is often what’s causing the most pain.”

Walbert holds nothing against any exec who over-preaches the patient-centricity gospel. “It’s a common term, and, frankly, it’s the right thing to say,” he notes. But as the leader of one of the fastest-growing companies focused on the rare-disease space, he believes patient-centricity acolytes don’t back up their talk with action as often as they should.

“There are a lot of companies that just float in and write checks,” he says. “What differentiates us is the time we spend with patients and advocacy groups. We’re at their events. We’re always listening.”

See also: Merck educates doctors about biosimilars, long before it will sell one in the U.S.

Walbert’s tenure at Horizon hasn’t been without its share of headaches, notably a federal investigation into the company’s patient-assistance programs and relationships with specialty pharmacies. At the same time, the company has grown sales from $7 million in 2012 to more than $1 billion in 2016, and now markets 11 drugs.

Along the way, Walbert and Horizon have proven savvy dealmakers, bolstering the company’s rare-disease arsenal by snapping up nascent biotechs Raptor Pharmaceutical, Crealta, and River Vision during the past 18 months. The latter acquisition, announced in May, added breakthrough thyroid eye disease (TED) drug teprotumumab to Horizon’s holdings. Following the publication of positive Phase II results in May, Phase III studies will be conducted later this year.

There are no approved treatments for TED, which affects a limited patient population of 10,000. Yet it’s in situations such as those that Walbert feels Horizon can make the biggest difference for patients.

“There are about 7,000 rare diseases today, and there are only treatments for 5% of them,” he explains. “So many of those diseases are essentially ignored because of the size of the patient population, and that’s not acceptable. The more we talk about this, even if it’s sometimes in a negative light, the more we can drive awareness.”

See also: Top 25 autoimmune brands in 2016, based on U.S. sales

To that end, look for Horizon to continue to press forward with patient-centric initiatives such as RAREis, which attempts to amplify the voices of patients in and around the rare-disease community, and UCD In Common, designed to help individuals with urea cycle disorder better manage their condition. In late July, Horizon launched CGD Connections, a program for chronic granulomatous disease patients, as well as their caregivers and HCPs.

“The campaigns are agnostic to our medicines,” Walbert notes. “The voice of the patient drives all the communication. People in these communities need to hear the stories that resonate. They need that rallying cry.”


2008–present      Chairman, president, and CEO, Horizon Pharma

2007-2009      President and CEO, IDM Pharma

2006-2007      EVP, commercial operations, NeoPharm

2001-2006      VP and GM, immunology, Abbott Laboratories