Beyond a Buzz Word: What 'Patient Centricity' Means to Me

Understanding our patients and advancing their access to care is part of our promise.

Paul Perreault

CSL, Ltd. CEO and Managing Director Paul Perreault

 

If you attend a biotech industry event these days, it won’t be long before you hear the word: “patient centricity.” We’ve been focusing on patients since 1916, well before anyone gave it a fancy name. Back then, we focused on patients by bringing critical medicines to the then-isolated continent of Australia. Today, our products are available in more than 60 countries, where we serve the needs of people who have rare and serious diseases.

Along the way, we selected patient focus as one of CSL Behring’s core values. In doing so, we made a promise to go below the surface of this concept. We know we must put actions behind our intentions, especially when as many as 350 million people in the world are living with a rare disease.

Meet Our Chief Patient Officers

True patient focus is more than checking a box and hiring someone called a chief patient officer. At CSL Behring, there’s no chief patient officer because I’m the chief patient officer. And so is Karen in Finance and John in Legal and Urim, who gets to work at 4 in the morning for the early shift at our Bern, Switzerland manufacturing site. From our most junior apprentices to the CEO, we’re all serving patients. By my count, around the world, we have 20,000+ chief patient officers.

We regularly invite patients to visit us at our different locations. Our employees want to understand what day-to-day life is like for them. When we welcome patients, they speak to a full house of team members representing a wide variety of departments.

We engage with patients so we can better understand their needs. We also provide educational opportunities for them and help build a strong community of patients and caregivers. For example, every year, I caddy for a young golfer at our Gettin’ in the Game Junior National Championship, an annual event we created more than 15 years ago for kids who have bleeding disorders.

Two participants at CSL Behring's annual Junior National Championship event in Phoenix.

Two participants at CSL Behring's annual Gettin’ in the Game Junior National Championship event in Phoenix. The event encourages kids with bleeding disorders such as hemophilia and von Willebrand disease to stay physically active.

The JNC promotes education, information-sharing and the importance of remaining active when managing a bleeding disorder. It’s a weekend of fast friendships and lasting connections. Activities like these remind patients and their families that they’re not alone. They all face similar struggles and cope with the same obstacles, including access to medicines that are a necessity, not a discretionary item.

Access Is an Imperative, Not an Afterthought

Patient access to life-saving medicines remains a global challenge that none of us can ignore. When we say “access” we’re first talking about whether patients will be able to obtain and use the medicines we produce. You won’t be surprised that people in the developing world have access issues.

That’s why we support the World Federation of Hemophilia’s humanitarian aid program, which brings life-saving medicines and expertise to people in countries like Vietnam and Cameroon, where life expectancy can still be astonishingly short for a child who has a bleeding disorder. Yet, in countries where patients have access to care, a child with hemophilia can now expect to live to a normal life expectancy.

Access to Care Helps the Undiagnosed

Rare disease diagnosis is a challenge worldwide. Symptoms can vary from patient to patient with the very same disease. It often takes years, multiple visits to different doctors and several misdiagnoses before a person with a rare disease is accurately diagnosed.

To support people in Africa who have primary immunodeficiencies (PI), we are proud to have sponsored the Jeffrey Modell Foundation’s North African Network. On that continent, less than 1 percent of people who have these life-threatening rare diseases get diagnosed. The network established the first-ever diagnostic and research center for PI patients in Africa.

Additionally, in more developed economies, the pace of government approvals can delay access. The regulatory framework for orphan medicines, produced for small populations of patients who have rare diseases, let us take a tremendous step forward. Without it, only eight orphan medicines had been approved in Europe and only 34 in the United States.

 

Fortunately, industry and the U.S. Food and Drug Administration have worked together to change that trajectory. In 2017 alone, 18 of FDA’s 46 novel drug approvals treat rare or “orphan” diseases, which affect 200,000 or fewer Americans. We need that to continue. But even approved medicines can face obstacles when it comes time for government insurance programs and private insurance companies to fund them.

 

We Must Prove Our Value

Here’s where questions of access are increasingly intertwined with another key word: value. Governments and insurance companies have the immense responsibility of choosing the treatments they will provide to the patients they serve. We, who discover, develop and deliver medicines, know we must demonstrate the value of our products. It’s part of the equation from the very beginning.

Achieving clinical endpoints is no longer enough. We must innovate in ways that are meaningful for patients and other stakeholders. In doing so, we’ll enable access and help patients to live longer, more satisfying lives.

At CSL Behring, we’ll deliver on our core value of patient focus by driving for progress in these key areas:

  • Earlier and more accurate diagnoses

  • Faster, more efficient medicine approvals

  • More treatment options for patients worldwide

  • More pathways for providing medicines to patients in emerging and developing markets.

     

Our patients and advocacy groups propel us forward, even if access does keep us up at night. Of course, the want of access is nothing new for us. More than 100 years ago, our company formed to bring needed medicine to a remote continent. Today, we’re a global organization with 20,000+ chief patient officers on the job. Our promise to patients has never been stronger.

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CEO Paul Perreault leads CSL Behring, a global specialty biotech company, which discovers, develops and delivers life-saving medicines to people with rare and serious diseases in 60+ countries.