Engaging with patients

03/01/2019
Patient stories

No one understands the impact of a disease and its treatment
better than a patient. Patients know what their disease means to
them and how it feels. Octapharma highly values and respects
each patient’s individual experience. We gain patient insights and
collaborate closely with healthcare professionals on a daily basis.
We take patient concerns and needs into account when we
develop our life-saving medicines, as we continue towards our
vision of providing new health solutions advancing human life.

When Octapharma decides to develop a new medicine, we are making a long-term commitment to focus on the lifelong journey of the patient. We are determined to help people in the bleeding disorder community enjoy their lives and achieve their dreams. For this reason, we are partnering with several healthcare and patient organisations to increase awareness and knowledge of the challenges facing patients, their families and care providers.

Awe-inspiring patient journeys: from Mount Everest to the San Juan Islands  

In “Bombardier Blood”, the Octapharma USA-sponsored documentary on Colorado mountain climber Chris Bombardier’s quest to be the first person with haemophilia to climb the “Seven Summits” (consisting of the highest mountain on each of the world’s seven continents), we show that people with bleeding disorders can enjoy a life without limits. In addition to Chris showing what can be achieved, the filmmaker, Patrick James Lynch, also has severe haemophilia.

Octapharma USA was also the exclusive sponsor of “Leading X San Juan Islands”. Our grant to GutMonkey, an experiential educational organisation, provided a life-changing experience for 10 people with haemophilia during a week-long adventure in the San Juan Islands. The trip focused entirely on improving patients’ confidence in managing their bleeding disorders.

1% of the US population is affected by von Willebrand disease
100 Octapharma Academy courses have taken place to date
10,000 participants have attended Octapharma Academy courses
Chris Bombardier on Mount Everest.
Tapping into patient insights

Von Willebrand disease (VWD), which affects up to 1% of the US population, is a genetic disorder caused by a missing or defective von Willebrand factor (VWF), a clotting protein in the blood. According to the US Centers for Disease Control and Prevention (CDC), despite the symptoms, many people, women in particular, are not aware of the disorder and therefore not diagnosed and treated. Octapharma is determined to change this.

Being a leading supporter of the VWD community, in 2018, Octapharma USA was the exclusive sponsor of three important educational programmes for the VWD community: the National Type 3/Severe VWD Conference, the Female Factor Retreat and the VWD Empowerment Weekend. In the words of Carl Trenz, Octapharma USA’s Director of Therapy Development, “Octapharma USA is committed to working with the VWD community and fostering greater awareness of the many challenges faced by patients and caregivers.”

Partnering with healthcare organisations

Octapharma USA has also been the sole sponsor of the Ig Academy at the Immunoglobulin National Society (IgNS) Annual Meeting for the past four years. In 2018, more than 200 nurses, pharmacists and physicians attended this very successful educational programme. IgNS is the only organisation dedicated to the field of immunoglobulin nursing and pharmacy practice. The Ig Academy is an annual one-day course that offers in-depth, evidence-based education on the most critical and relevant aspects of Ig therapy practice. It also teaches the foundational principles and practice parameters of Ig therapy to nurses and pharmacists.

Facilitating wider access to medical information

Keeping up to date with the latest medical information is always a challenge for patients and healthcare professionals, but even more so in low and middle-income countries. Octapharma has developed a range of initiatives in this area. We continue to launch partnerships with local healthcare professionals to support change, as well as the exchange of information and knowledge worldwide.

The Octapharma Academy is one such highly appreciated programme. Since its launch in 2009, the Octapharma Academy initiative has generated considerable interest, serving as a platform to provide high standards of education and tools for successful collaboration.

Following the motto, “Where science meets clinical practice”, the Academy concept serves as an excellent forum in which healthcare professionals can interact, raise awareness and share their experiences.

The Academy combines education with interactive workshops within our three therapeutic areas: haematology, immunotherapy and critical care. To date, more than 100 Academy courses have taken place across Eastern Europe, the CIS region, Latin America and Mexico, attended by over 10,000 participants. Octapharma is determined to contribute to the ongoing quest of improving patients’ lives – not only by offering our life-saving medicines, but also by facilitating the sharing of knowledge among healthcare professionals and patients across geographies.

Keywords

Haematology

Engaging with patients

Annual report