The Canadian Hemoglobinopathy Association/ L’Association canadienne d’hémoglobinopathie (CanHaem) was formed in June 2013 as a not for profit organisation dedicated to the care of individuals across Canada with Hemoglobinopathies. This is a truly exciting time for healthcare professionals and researchers in the field of Sickle Cell Disease and Thalassemia. CanHaem is positioned to be at the forefront of planning and implementation of equitable care across the provinces and territories, and a successful research program relevant to our patients and healthcare system.
The Association’s structure is in line with its priorities: patient care, nursing collaboration, research, and development of a Canadian patient registry.
Dr. Richard Ward
Chair, Canadian Hemoglobinopathy Association
The History of CanHaem
The Canadian Hemoglobinopathy Group was founded in 2006 on the recommendation of the Hemoglobinopathy Group of Ontario (HemGO). Regular videoconferences were established to disseminate research and education to interested individuals from across the Country, and an annual gathering was established at the ASH meeting. In 2009, CanHaem participated in the publication of Canadian Thalassemia guidelines of care. That same year, an email nursing forum was established by the group. In 2013, a meeting was held in Vancouver with the aim of formalising the Group into a not-for-profit association. At that meeting, Sickle Cell guidelines of care were distributed for expert review, a website was previewed for the Association, and bylaws agreed upon. Interim directors were nominated with the purpose of establishing a platform for the Association to grow ahead of a meeting of members in 2014. On June 21, 2013, the Canadian Hemoglobinopathy Association was granted a certificate of Incorporation from Industry Canada with the head office in Ottawa.
Hemoglobinopathy Care in Canada
With improvements in care, there has been a need to expand clinical services for Thalassemia and Sickle Cell Disease. In 2000, adult Sickle Cell clinics were established to care for children transitioning beyond 18 years of age, and Edmonton followed suit in 2004. A newborn screening program was launched in Ontario in 2006. In 2007, an adult clinic was started in Calgary, and a pediatric nurse specialist appointed in Vancouver. 2009 saw British Columbia launch newborn screening, and an adult clinic also began in Vancouver. In 2010 a transition program was launched between the pediatric and adult clinics in Vancouver. Education came to the fore in 2011 with a Hemoglobinopathy Symposium in Hamilton, Ontario, and a workshop at the Hematology Residents’ National Retreat in Toronto. Some areas of Quebec introduced newborn screening in 2012, and a national patient body was formed, the Sickle Cell Disease Association of Canada (SCDAC). In 2014, newborn screening extended to Nova Scotia, a pediatric clinic was established in Calgary, and a transition program developed in Hamilton.
Newborn screening has been successfully implemented in some provinces, but not throughout the Country. Alongside this, considerable progress has been made in establishing pediatric and adult Hemoglobinopathy care centres in the major cities affected by these disorders. However, access to equitable care has not been achieved, resources are variable and links between pediatric and adult providers inconsistent. There is uncoordinated training of physicians, nurses and allied healthcare professionals across the Country, and variable access by patients to education material. A strong Sickle Cell advocacy group (the SCDAC) is recently established, and opportunities present to partner with the SCDAC and Thalassemia Foundation of Canada (TFC). The number of individuals affected by Hemoglobin disorders in Canada is unknown, and estimates are likely inaccurate. There is no established research infrastructure for these disorders, but a huge potential exists across the care centres. Formalisation of CanHaem will allow the Association to harness its experts to spearhead the development of clinical care, education and research in this field.