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:
- Hemophilia has a substantial impact on the working life
of people with hemophilia and parents of people with hemophilia
53% of people with hemophilia responded that hemophilia has
had a very large or moderate impact on their working life
27% of parents of people with hemophilia responded
that hemophilia has had a very large or moderate impact on their
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
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.