Project
Newfoundland and Labrador Blood and Immune Disorders Research Advocacy and Education Project
A Project of Dr. Mary-Frances Scully, Associate Professor, Division of Hematology/Oncology, Memorial University of Newfoundland and Dr. Palinder Kamra, Clinical Associate Professor, Department of Pediatrics, Memorial University of Newfoundland
In 2011 we are experiencing an epidemic of cancer, diabetes mellitus, stroke, heart disease, blood clots in the lungs and legs, and anemia in our province. Cancers of the blood and immune system account for 20% of cancer patients in the province of Newfoundland and Labrador. Myeloma and lymphoma are the most common blood cancers.
The anemia of chronic disease is a very common complication of cancer, inflammatory arthritis, uncontrolled diabetes, kidney disease, inflammatory bowel disease and other inflammatory disorders. Anemia caused by iron deficiency occurs at all ages; in young children, teenagers, pregnant women and in elderly people with disorders of the digestive system. Untreated, unrecognized anemia contributes to a decreased quality of life and prolongs hospital stays. Many thousands of Newfoundlanders and Labradorians live with anemia. Hemochromatosis is another potential cause of illness. These patients have the reverse problem and accumulate iron in their bodies leading to toxicity.
5% of the population of Newfoundland and Labrador are heterozygote for the Factor V Leiden Mutation. 2% of the population is heterozygote for the Prothrombin Gene Mutation. These mutations under certain circumstances may increase the risk of the individual experiencing venous or arterial clotting problems such as deep venous thrombosis, pulmonary embolism, myocardial infarction and stroke. 10,000 individuals in the province are taking oral anticoagulant therapy to prevent further blood clots. Blood clots are the commonest complication of cancer therapy, diabetes mellitus. Blood clots are common complications of obesity, inactivity, surgery, injury, cardiac failure, lung failure, inflammatory bowel disease, liver and kidney disease, and other rare illnesses and affect tens of thousands of people in the province.
In addition to these common disorders, Newfoundland and Labrador has the highest reported rate yet of rare bleeding disorders. Especially there is a very high prevalence of mild Hemophilia A and severe Factor XIII deficiency in this province. Also, 5 to 10% of women experience problems with heavy periods or bleeding with pregnancy and some become severely anemic and can have life threatening bleeding. There is a growing concern among physicians in the province that primary (genetic) immune deficiency disorders may also be more common in this province. These conditions, like rare bleeding disorders, are very challenging to diagnose and may be under diagnosed.
The majority of patients with a bone marrow failure syndrome have an underlying blood cancer. However, again, some patients are born with a predisposition to bone marrow failure. We need to develop a provincial plan to provide good care to patients living with bone marrow failure and other serious bleeding, clotting and immune deficiency disorders. Especially we need to work with our colleagues in Emergency Medicine to improve time to treatment of patients who are immunocompromised or have bleeding or clotting problems who come to the Emerg.
Over the past 5 years, at the Health Sciences Centre in St. John’s, the members of the Adult Division of Hematology/Oncology have become concerned by the number of patients presenting with primary resistant leukemia, lymphoma, myeloma, and by the number of patients presenting with multiple cancers.
Also, international experts are suggesting the need for umbilical cord blood banking as cord blood is very rich in stem cells and can be used to cure some hereditary metabolic conditions and possibly to treat other conditions.
In summary, disorders of the blood and immune system affect a very high proportion of the population. The Newfoundland and Labrador Blood and Immune Research Advocacy and Education Project has been initiated by Dr. Mary-Frances Scully, Associate Professor in the Division of Hematology/Oncology and Dr. Pali Kamra, Clinical Associate Professor, Department of Pediatrics, the Faculty of Medicine with the following goals:
1. Over time we hope to partner with decision makers at all levels of government and especially with the healthcare authorities, the professional associations for healthcare providers, Memorial University of Newfoundland and Labrador researchers, with all groups involved in education from high school teachers to grad students, med students, nursing students, pharmacy students and allied health professionals and with Canadian patient advocacy groups and their local chapters. The goal will be to work together to help improve quality of life and quality of care of patients with blood and immune disorders.
2. We wish to promote the development of a provincial strategy to prevent complications of blood and immune disorders and to learn from Canadian centres of excellence in the care of blood and immune disorders and to work on translating national and international guides produced by other countries who are leaders in this field. Our goal is not to reinvent the wheel, but to search for innovative, creative cost efficient, cost effective models of healthcare delivery for patients with disorders of the blood and immune system.