By John Burrows | Published 29 March 2019
In Canada, about 3,100 people live with hemophilia. While rare, this bleeding disorder can have serious health impacts: chronic pain, limited mobility and even risk of premature death if treated inadequately.
Teens living with hemophilia face additional challenges. Social activities can complicate staying compliant with treatments. There can be challenges associated with transition of care from pediatrician to general practitioner. Further complicating the issue, young adulthood is also when teens make decisions about future careers. While this phase of life can be stressful for anyone, those with hemophilia need to consider a path that can accommodate their condition. Others may fear stigma or may be nervous of their condition being perceived as an issue to potential employers.
The Hemophilia Experiences, Results and Opportunities (HERO) initiative was the largest-ever psychosocial study in hemophilia. The study, which involved 1,236 participants from 10 countries, found:
As the study shows, the impact that hemophilia has on careers and working life is significant. For young people just starting their careers, mentorship can be a valuable asset as they start this phase of life.
Novo Nordisk Canada has sponsored the ‘BE’ Job Shadow Program since the project’s inception in 2014, when it was launched as a pilot program in two Canadian cities. ‘BE’ was developed, launched and guided by the Canadian HERO National Advisory Board, comprised of a physician specializing in hemophilia, nurses, physiotherapists, social workers and a researcher. The program allows youth to job shadow fields such as architecture, film, medicine, sports training and others, and is designed to provide exposure to potential careers. The program offers the opportunity to shadow up to three jobs in the individual’s top areas of interest. Today, the program has helped 20 participants experience 41 jobs with 42 different employers across Canada.
‘BE’ was initially born out of the HERO study results but continues to be guided and improved by the Canadian HERO National Advisory Board, whose members are all involved in the treatment of hemophilia. Since its launch, participants, parents and clinic directors have observed the beneficial impact of the program. One parent remarked, “I truly feel that this was a very rewarding and beneficial experience [for my child], as well as, I am certain, all of the other participants in this program across Canada!”
Developing treatments is only one aspect of bettering patient lives. At Novo Nordisk, patients are at the center of how we develop our products, but they are also at the center of programs we deliver to help patients lead productive lives. We remain committed to supporting the hemophilia community. Until a cure is found, our work isn’t over. From developing innovative treatments, conducting research and supporting ongoing programs and services, the patient always comes first.
Hemophilia is a rare and serious disease affecting approx. 1 out of 10,000 people around the world. Many people with Hemophilia are still undiagnosed or inadequately treated.