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How one pharma “family business” places patients first –

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When people think of pharmaceutical companies, they often think of “big” pharmaceutical companies — large, faceless companies. But Giacomo Chiesi, head of Chiesi Global Rare Diseases, considers the 6,000-employee company a family business. Family Just as his business thrives on community ties, Chiesi is committed to connecting with the global patient community.

Founded in 1935 by Chiesi’s namesake grandfather, the Chiesi Group focuses on respiratory conditions, special care, and rare diseases, including lysosomal storage disorders and rare blood and eye diseases.

“A key advantage of being a family business is that we can focus on the long term. We are thinking about the next generation of people, not necessarily the next month or the next quarterly report,” Chiesi said. increase. “We try to have a very long-term direction. Because we believe in doing business.”

Chiesi has demonstrated its dedication to global public health through its designation as an accredited Benefit Corporation (B Corp) since 2019. And Chiesi explained that the company lives up to its commitment to patient-centricity through all its operations.

For example, at the SSIEM Annual Symposium earlier this month, the company shared data on new treatment candidates for Fabry disease, a rare genetic blood disorder. His Chiesi approach to these trials clearly demonstrates Chiesi’s patient-centered approach in action.

Consideration for the global community

B Labs, a non-profit organization, issues B Corp certification to companies that demonstrate positive social and environmental impact and make certain commitments to accountability and transparency.

This status does not come easily, Chiesi is the largest pharmaceutical manufacturer designated a B Corp.

“We believe that we need to take care of the planet and the people who live on it, so sustainability is a major concern of our business,” says Chiesi.

When thinking about their work in rare diseases, Chiesi cites the United Nations Charter and its call for “health for all ages.”

“This sets a high bar,” he says. “It is still a goal, but it is not a reality today. Our hope is that by helping patients and their families who suffer from these diseases and conditions, we can help all people of all ages achieve good health. That’s it.

Every pharmaceutical company developing treatments for new diseases contributes to some extent to improving global health. However, rare diseases are a particularly important and challenging area of ​​focus.

“Several unique factors, such as small target patient populations, lack of long-term safety and efficacy data or natural history data, and often complex dosing, dosing, and patient monitoring requirements, limit the availability of therapeutic options for rare diseases. There are many challenges in development,” says Chiesi. “Diverse stakeholders do not share responsibility for meeting the critical unmet medical needs of the rare disease community. We have not developed models or policies to adequately support it.”

Chiesi recently commissioned research to show how important the development of treatments for rare diseases is to public health. In collaboration with IQVIA, his 8.4 million rare disease patients in the U.S. cost about $2.2 trillion annually, and social responsibility for all known rare diseases is estimated at $7.2 to $8.6 trillion annually. I understand. However, these costs will decrease as treatments for rare diseases become available.

“One of the most interesting findings is that there is an average increase in total annual cost per patient of approximately 21% when there is no treatment compared to when there is an approved treatment available to the patient. was to do it,” Chiesi said. “These results highlight the need to invest in therapeutic innovation, not just in diagnostics and newborn screening. It also helps justify increased government investment in ensuring broad patient access to effective treatments and policy proposals in the United States.”

Organize the patient’s voice

Chiesi’s broader commitments are focused on serving patient communities around the world, but patient-centricity within the organization also occurs at the individual level.

“We start our meetings by bringing patient testimonials to life and letting the team reflect on how the goals of each meeting ultimately lead to patient needs,” says Chiesi. “If the direct link between the purpose of the meeting and the interests of the patient is not clear, the team will consider canceling and reorganizing the meeting. It accelerates the convergence between the need to develop products in , and the need to make them available to patients as quickly as possible.”

Patient-centricity is more than Chiesi’s topic. Many initiatives, both old and new, highlight the company’s focus. The company has a dedicated patient advocacy team focused on building strong relationships with patients and their families, and a patient engagement team to ensure that the needs of all patients are considered, including in the design of clinical trials. I have both teams.

“For example, a patient with Fabry recently contacted me to say that he was unable to participate in our Extended Access Program (“EAP”) in the United States because of his age,” Chiesi said. . “We promptly discussed this need with the FDA, and they agreed to a protocol amendment to allow the patient to safely access her EAP.”

These groups have also used patient feedback to build digital tools that drive engagement. For example, in the area of ​​Fabry disease, Chiesi recently launched a disease education program.

“As with many rare diseases, there is often limited information and resources available to support patients, caregivers and families,” said Chiesi. “With this ongoing need in mind, we are engaging with members of the rare disease community to provide patients, their caregivers, families, and healthcare professionals with information and perspectives about Fabry disease to help them make informed decisions. about their health.”

Chiesi Philosophy in Practice

Even recent trial data presented at the SSIEM Annual Symposium ties into Chiesi’s overarching philosophy of patient-centricity and public good.

“We put our medicines through challenging clinical studies to create clarity and transparency about our products. Our solutions are often the ‘standard of care’ and the difference is real.” It’s objective and objective,” Chiesi said. “We are designing our clinical development strategy and trials with this objective in mind.”

This takes the form of trial designs that go beyond the small studies typically done in hard-to-finance and recruit rare disease areas, and instead replace the large-scale studies more commonly seen in mainstream pharmaceutical R&D. start a comparative study. It also includes testing all clinical situations in which the drug might be used. These include new patients, well-controlled patients switching from existing therapy, and patients switching because standard therapy does not provide adequate control.

“This design enables physicians to make more informed and confident treatment decisions than in most other cases,” Chiesi said.

The Chiesi Group may have started humblely in 1935, but the family business has grown to become an important player in the pharmaceutical industry. And they’ve done so without sacrificing their dedication to positive social impact and their enduring focus on the lives and experiences of their patients. is an example of these values ​​in action.

“Our goal has always been to have a positive, long-term impact on patients and society, and I live by this mission every day,” says Chiesi. “Chiesi has a long history of commitment to the rare disease community in particular, and in 2020 we established a business unit, Chiesi Global Rare Diseases, to reinforce our commitment to putting rare disease patients at the center of everything we do. .”

About the author

Giacomo is currently Head of Global Rare Diseases for Chiesi Group, leading a team to develop and commercialize therapeutics for rare and ultra-rare diseases.

He was previously Head of Global Corporate Development at Chiesi Group, leading the team through intense trading activity. The transaction will see Chiesi becoming a global company expanding into several new countries including Canada, Australia and China, entering the US market to increase its presence, selectively expanding in new markets in Europe and expanding globally. helped establish a competitive portfolio and a rare pipeline. This culminated in the formation of a new organization: Chiesi Global Rare Diseases.

In 2014, he founded Chiesi Ventures as a joint venture with Pappas Capital, an established life sciences venture capital fund, where he is currently a managing partner. He serves on the board of his Chiesi Group. He was previously an observer or member of his board for Chiesi USA, Glycomine, Aura Biosciences, Sentien Biotech, and Minoryx Therapeutics.

Prior to joining the family business, he was a consultant at Bain & Company, a management consulting firm, where he led teams on various assignments including due diligence, restructuring and strategic projects for consumer goods and IT companies in various countries.

Previously, he worked for Accenture where he led large teams on outsourcing projects in Europe and the US for transportation and retail clients.

Giacomo holds a Master of Science degree with honors in Telecommunications Engineering from the University of Parma, Italy and an MBA from the University of Chicago Booth School of Business with an emphasis on entrepreneurship, economics and finance.

He practices gymnastics daily, enjoys spending time with his wife and children, reading, traveling and playing guitar. Received the Champion of Hope award from Global Genes in 2021.

About Chiesi Group

Chiesi is a research-focused, international biopharmaceutical group that develops and markets innovative therapeutic solutions in respiratory health, rare diseases and specialty care. The company’s mission is to improve people’s quality of life and act responsibly towards both their communities and the environment.

By changing its legal status to a Benefit Corporation in Italy, the United States and France, Chiesi’s commitment to creating shared value across society is legally binding and central to company-wide decision-making. Chiesi has been B Corp certified since his 2019. This means that its sustainability efforts are measured and evaluated by the most ambitious global standards. The company aims to be net zero by 2035.

With over 85 years of experience, Chiesi is headquartered in Parma (Italy), operates in 30 countries and employs over 6,000 people. The group’s R&D center in Parma is linked to his six important R&D sites in France, USA, Canada, China, UK and Sweden.

For more information, please visit: www.chiesi.com

About Chiesi Global Rare Diseases

Chiesi Global Rare Diseases is a business unit of the Chiesi Group, founded in February 2020, focused on research and development of treatments for rare and ultra-rare diseases. The Global Rare Diseases unit, in collaboration with Chiesi Group, leverages all the resources and capabilities of our global network to deliver innovative new treatment options for people with rare diseases. The unit is also committed partners with world leaders in patient advocacy, research and patient care. For more information, see: www.chiesirarediseases.com.

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