Init & Cancer: Fact Sheets Init Tapiriit Kanatami Febrary, 2009
INTRODUCTION Init Tapiriit Kanatami developed a series of fact sheets to raise awareness of Init and cancer with the intent of informing decision makers, advisors and nongovernment organizations abot Init s niqe cancer concerns and realities. The following are the themes of each fact sheet: Abot Init Init Health Stats Health Care Delivery in Init Regions Cancer Brden Prevention Screening, Diagnosis and Treatment Cancer Care Hman Resorces Research & Srveillance This project received financial spport from the Canadian Cancer Action Network.
FACT SHEET: ABOUT INUIT Did yo Know? One person of Init descent is an Ink, which is singlar for Init. Invialit is the correct term for Init from the Invialit Settlement Region in the NWT. Init are Aboriginal or First Peoples, bt are not First Nations. Also, Init are not Inn. Inn are a First Nations grop located in northeastern Qebec and parts of Labrador. Init do not live on or off reserve, this applies only to First Nations. Init live in Init commnities, hamlets or villages. In Canada, each Init region has comprehensive land claims: Invialit Final Agreement (1984), Nnavt Final Agreement (1993), Labrador Init Land Claims Agreement (2005), and in Nnavik; James Bay and Northern Qebec Agreement (1975), and the Nnavik Init Land Claims Agreement (2006). Init land claim regions occpy 40% of Canada s land mass. The Init poplation is the yongest in Canada, with 56% of the poplation nder the age of 25. The Init langage is one of the strongest Aboriginal langages in Canada. In 2001, abot 7 in 10 Init spoke the Init langage well enogh to have a conversation. (Stats Canada) Who are Init? Init are the indigenos people that inhabit the Arctic regions of Canada, Rssia, Alaska and Greenland. In Canada, there are approximately 50,500 Init living primarily in for regions: Nnavik (Northern Qebec), Nnatsiavt (Labrador), the Invialit Settlement Region (Northwest Territories), and the new territory of Nnavt. There are Init living in every political jrisdiction in Canada, with growing poplations in Ottawa, Montreal, Yellowknife, Winnipeg, Edmonton and other cities. Init are nited by a common cltral heritage and a common langage. Init Nnaat (homelands)
Demographics Below are some demographics from the 2006 Censs release for Init in Canada: Over three-qarters (78%) of Init lived in one of the for Init regions Nnavt is the largest region with 49% of all Init nationally. Nnavt s Init poplation is 24,635 Nnavik contains 19% of all Init with a poplation of 9,565 The Invialit region is home to 6% of all Init, with a poplation of 3,115 There are 2,160 Init in Nnatsiavt acconting for 4% of all Init in Canada. 17% of Init lived in rban centres otside of Init regions, p from 13% in 1996. In 2006, the censs conted 725 Init in Ottawa, 640 in Yellowknife, 590 in Edmonton, 570 in Montreal and 355 in Winnipeg. Init Cltre Init cltre is niqe, vivid and alive. It consists of: storytelling, legends, songs, vales, principles, msic, food, artwork and many other aspects relating to the Init way of life. The Init way of life is rooted in a close relationship with the land and sea of the Arctic environment. Init Contry Food Init refer to their traditional diet as contry food or Init food. It is a large part of the Init diet and many Init prefer contry food over store boght food. Contry food incldes: Arctic Char, caribo, walrs, seal, geese and other animals, birds, herbs and seafood from the Arctic environment. Init receive their contry food by hnting, fishing and harvesting which is an integral part of life for Init. Contry foods are important to the physical, cltral and economic health of Init. There are many dialects in the Init langage sed by Init from across Canada, referred to as Inktitt, Inttitt, Ininnaqtn, Invialktn and other local names. The Init langage has official recognition in Nnavt and the Northwest Territories and has legal recognition in Nnavik and Nnatsiavt. The sage of the Init langage differs between Init regions. It is the strongest in Nnavik and Nnavt bt is not as widely spoken in the Invialit region and in Nnatsiavt. The writing system is in roman orthography or with Inktitt syllabics, depending on the region. Traditionally, the Init langage was oral, with no written langage ntil Christian missionaries developed a writing system to translate the bible. The Init langage is one of only 3 Aboriginal langages in Canada strong enogh to ensre its srvival. Init Langage In 2001, abot 7 in 10 Init spoke the Init langage well enogh to have a conversation. The Init langage is declining seniors speak it more than yong people. Or langage contains the memory of for thosand years of hman srvival throgh conservation and good management of or Arctic wealth. (Eben Hopsen, 1977)
FACT SHEET: HEALTH STATUS Init Health & Well-Being There are persistent and serios disparities between the health indicators of Init and the general poplationof Canada. The life expectancy gap between Init and other Canadians is 13 years and the gap is not closing. The United Nations Hman Development Index, a standard measre that rates the well-being of member states, placed Canada 6th among 192 nations in 2006. Indian and Northern Affairs Canada sed this data to create a Commnity Well- Being Index to evalate the well-being of Init. When the formla is applied to living conditions in Init commnities, Init place 99th. The sicide rate for Init is more than 11 times the overall Canadian rate The TB rate for Init is almost 23 times the overall Canadian rate Sicide rates rate/100,000 160 140 120 100 80 60 40 20 0 135 24.1 11.8 Init Stats Indians All Canadians The life expectancy gap between those in Init commnities and all Canadians is abot 13 years and is not closing. In it co m m n itie s To ta l C a n a d a Firs t N a tio n s o n re s e rve Life expectancy (years) 8 5 8 0 7 5 7 0 6 5 6 0 1 9 9 1 1 9 9 6 2 0 0 1 Year
Did yo know? Lng cancer rates for Init men and women in Canada are the highest in the world and these rates are rising. (Circmpoloar Cancer Review) The death rate from strokes is twice as high for men and women in Init commnities than for all Canadians. Women in Init commnities have a COPD death rate that is 10 times that of other Canadian women. Death rates for perinatal and congenital conditions are more than 2 times higher for those in Init commnities. 46% of Init do not have a high school diploma as compared to 15% of the general Canadian poplation. The median income for Init adlts is mch lower than that for all Canadians: Init, $13,699 compared to $22,120. (Init also have a mch higher cost of living.) Hosing Conditions Init are living with a hosing crisis, with the highest rate of overcrowding in Canada. The hosing conditions are often sb-standard, with problems with air qality and mold. Hosing conditions in Init commnities affect both the mental and physical health of Init. It relates to many health and social problems in Init commnities, inclding bt not limited to: commnicable diseases, injry rates, Init Total Canadian poplation domestic violence, 35 31 sicide, and 30 28 sbstance 25 abse. 20 % 15 10 5 0 3 % in crowded hom es % in hom es needing m ajor repairs 7 Food Secrity Init have food secrity isses that contribtes to their ntritional stats. Food secrity has been identified by Init as a policy priority and an area of ongoing concern. Foods sold in stores across the Arctic are expensive when compared to sothern otlets and often the less ntritios foods are cheaper to prchase, which does not reslt in the best ntritional otcomes for Init. This poises a nmber of diet related health risks, sch as ntritional deficiencies and increased body weight, increased body weight can also be correlated with increased risk of developing diabetes and cardiovasclar disease. A stdy by Indian and Northern Affairs, fond that 83.3 % of Init hoseholds in an Init commnity were classified as food insecre and more than half of the families had experienced hnger in the past year. The general poplation of Canadian hoseholds in the 1998-1999 National Poplation Health Srvey reported 10.2 % of food insecrity. The reason for higher rates among Init are: low income, higher costs of food (3-5 times higher than major rban centres in Canada), changing dietary habits and other factors. Cost of Food in Init Commnities A stdy of food costs in Kgaark, Nnavt by INAC fond that the total cost of a 46- item Northern Food Basket intended to feed a family of for for a week was $327 in Kgaark and $163 in Yellowknife. The perishables alone cost $140 in Kgaark, compared to $67 in Yellowknife and $65 in Edmonton; priority perishables cost $87, compared to $37 in Yellowknife. Prevalence of Food Insecrity in Canada Province/ Territory NV T NW T Y K BC NS SK A B NF NB MN QC ON PEI 13 13 14 14 15 15 17 17 17 17 21 28 Canada - 14.7% 0 10 20 30 40 50 60 prevalence of food insecrity (%) 56
FACT SHEET: HEALTH CARE Did yo Know? Within Init commnities there is limited availability of health care personnel and fewer services Init mst often travel great distances for specialized health services, inclding diagnostic testing and longterm care Cltral barriers (langage, the absence of Init knowledge within the health care system, and lack of cltral awareness) limit the ability of health care professionals to relate to and effectively meet the needs of their Init patients. Recritment and retention of health practitioners is a challenge de to lack of local, skilled workforce, isolation, and the high cost of living. The overall cost of health care delivery is significantly higher. Health Care in Init Regions Init across the North are actively engaged in protecting and preserving their traditions, while adapting to the changing social and political environment. Any effective health care system for Init mst reflect that balance, combining innovation with respect for Init history, geography, cltre, langage and political strctres. Init have a rich tradition of healing and wellness practices. Crrent health delivery systems, however, do not consistently reflect Init cltre, langage or vales they are based on western medical models, and dominated by non-init. Many feel exclded or marginalized by a health care system so clearly foreign to Init ways. Init women, in particlar, have identified as a priority the need to feel welcome and eqal when attending health clinics. There are some effective models for bridging the cltral gap; the birthing centres in Nnavik, for example, have scceeded in integrating contemporary and traditional approaches to childbirth. In 2002, Roy Romanow s report, Bilding on Vales: The Ftre of Health Care in Canada, describes the health impacts of living in the far north:... geography is a determinant of health.... Access to health care also is a problem, not only becase of distances, bt becase these commnities strggle to attract and keep nrses, doctors and other health care providers... let alone accessing diagnostic services and other more advanced treatments facilities are limited and in serios need of pgrading. (People mst)... travel in order to access the care they need. This often means days or weeks away from family and social spport as well as the added cost of accommodation and meals.
Provision of Health Care within Init Regions Provinces and territories are primarily responsible for the delivery of insred health services to their citizens, with fnding from the federal government nder the Canada Health Transfer. On the basis of legislation, policy, and historical practice, the federal government provides some additional health services to First Nations and Init, inclding fnding for pblic health activities, health promotion and the detection and mitigation of hazards to health in the environment. Nnavt and the Northwest Territories The Governments of the Northwest Territories and Nnavt deliver primary health care services to their residents, in accordance with the Canada Health Act. Fnding for hospital and physicians services is provided to the territorial governments throgh the Canada Health and Social Transfer and Territorial Formla Financing payments. Primary health care services are provided to Init by virte of their residence in a territory, and not as a reslt of Aboriginal stats. Init in both territories are now playing a more active, empowered role in health care policy, programming and service delivery, thanks to provisions in their respective land claims agreements that reqire governments to seek Init inpt and direction. Both the Invialit Regional Corporation and Nnavt Tnngavik Incorporated have participated in discssions and planning to help focs the design and delivery of health care services and the inclsion of specific programs within the two territories. Nnavik In 1975, Init in Nnavik and Cree in the James Bay area signed the James Bay and Northern Qebec Agreement with the Government of Canada and the Government of Qebec. Under this Agreement, the Government of Qebec assmed responsibility for federal health care centres, nrsing stations and health stations, which in trn were transferred to the Cree Board of Health and Social Services, James Bay and/ or the Nnavik Regional Board of Health and Social Services. Qebec now fnds the administration of health services, which in Nnavik is divided into two regions - Ungava Bay and Hdson Bay. Each region is administered by a board comprised of commnity representatives, regional government representatives and health care professionals. Services nder this governance strctre are flly accessible to all residents, regardless of ethnic origin. Federal fnding for Init and First Nations-specific health programs was also transferred to Qebec for delivery in Nnavik. These inclde sch initiatives as Brighter Ftres, Bilding Healthy Commnities, Pre- Natal Ntrition, and Non-Insred Health Benefits. The Nnavik Regional Board of Health and Social Services is in a niqe position of negotiating its federal government health program fnding with the Government of Qebec. Nnatsiavt On December 1st, 2005, Init in Labrador signed a Self-Government and Land Claims Agreement with the federal government and Newfondland and Labrador. The mandate for delivery of primary health care services will be taken on by the Labrador Grenfell Health Board, one of for health boards in the province of Newfondland and Labrador. Services formerly delivered by the Labrador Init Health Commission, Mental Health and Addictions, Pblic Health Nrsing, Home and Commnity Care, Environmental Health, Non-Insred Health Benefits and Child Care will contine, with enhancements to maximize the ability of Nnatsiavt to create more Init-sensitive programming. Under the Land Claims Agreement, Init will take over management of Commnity Clinics and Child Yoth and Family Services in Nnatsiavt, when finances are negotiated and the infrastrctre is in place. Roles and responsibilities are still being defined and clarified, bt the Land Claim marks an important step forward in the development of appropriate Health Care services and programs for the Init of Nnatsiavt.
FACT SHEET: CANCER BURDEN Cancer & Init Compared to the general poplation of Canada, Init have a higher incidence of lng, liver, oesophageal, nasopharyngeal, and salivary cancer. However, they have lower rates of breast, prostate, and endometrial cancers. Cancer is the second leading case of death among Init. Incidence rates are increasing, especially in rates for preventable cancers, sch as lng cancer. It is sspected that, aside from tobacco smoke, levels of PCBs (polychlorinated biphenyls) and other POPs (persistant organic polltants) may be a factor in rising cancer rates among the Init poplation. Northwest Territories Statistics on mortality confirm that cancer as a leading case of death increased in the NWT between 1990 and 2002. Cancer now acconts for 20% of all deaths in the NWT, making it the second leading case of death after Injry and Poisoning (38%). The most common diagnoses of cancer among female Init in the NWT are breast (22%), colorectal (22%), trachea, bronchs, and lng (19%). The most common forms of cancer among Init men in the territory are trachea, bronchs, and lng (25%) and stomach (16%). Nnavt According to the Cancer Registry, a total of 134 cases of lng cancer were diagnosed in Nnavt between 1988 and 1997, acconting for 34% of the 354 cancer cases docmented over the decade. In the Baffin region, lng cancer acconted for 42% of all diagnosed cancers. In Canada as a whole, lng cancer represents 16% of all cancers dring the same period. The information provided is not Init-specific and data available is based on all Nnavt residents, where 85% of the poplation is Init. * please note: There is very limited statistical data indicating the nmber of Init in Nnavik and Nnatsiavt becase the cancer registries in Qebec and Newfondland and Labrador do not have an Init ethnic identifier.
Circmpolar Init Cancer Review Dr. Ke Yong from the University of Toronto recently gathered data for Circmpolar Init from Alaska, Denmark/Greenland, and Canada. The research indicates cancer in general is increasing among Init. The following tables provide some of the Canadian Init reslts: For both Init men and women, cancer rates have risen in the past 30 years. Lng cancer rates for Init men and women in Canada are the highest in the world and these rates are rising. Colorectal cancer rates for both Init men and women have risen sharply since 1989 Cervical cancer rates for Init women in Canada are declining with time.
FACT SHEET: CANCER PREVENTION Health Promotion Health promotion programs have the greatest impact when their message, imagery, langage and style reflect the langage and cltre or their intended adience. Init mst have timely, accrate information on cancer to promote awareness, spport edcation, and encorage prevention. Crrently, however, there are very few cltrally appropriate resorces available to spport these goals. Topics for Cancer Health Promotion Init-specific materials to spport intervention, engagement and edcation in the following areas are reqired for cancer prevention: Smoking Alcohol Healthy diet Physical activity Sn protection Resorces on the following topics are also reqired to promote cancer awareness: Symptoms and early warning signs Tips for redcing the risk of cancer, inclding rotine screening Cancer diagnosis and treatment processes Treatment options and other services after diagnosis, inclding those available in Init commnities. Cltrally Appropriate Tips on how to be Cltrally Appropriate in health promotion for the Init poplation: Messages and concepts originate from Init or an Init organization/company Prodcts are targeted solely to the Init adience and not a pan-aboriginal adience The message is written in the Init langage first and then translated into English Ensre Init relate to the imagery Visal messages work better than written messages Technical terms are kept minimal and/or written in plain langage
FACT SHEET: SCREENING, DIAGNOSIS & TREATMENT There is crrently limited cancer screening and early detection programs available to Init. Access to health services is serios problem and often the person is not diagnosed ntil the cancer is at a severe stage. In lower socioeconomic, medically nderserved, and non-white segments of the poplation, the incidence of cancer is increased, and cancer is sally diagnosed at more advanced stages. This is consistent with what happens in Init commnities. Treatment Radiation, chemotherapy and srgery are not offered in most Init commnities; Init have to travel to rban centres sch as St. John s, Montreal, Ottawa, Vancover or Edmonton for treatment. Componding the problem of distance, Init also face long waiting lists, lengthy referral times, and barriers of langage and cltre. Init coming to terms with a cancer diagnosis may in fact opt ot of treatment, which typically reqires leaving their homes, commnities, and the spport of family and friends, and immersion nder extreme stress in an nfamiliar langage and cltral setting. Many Init nderstand that leaving home for treatment means the possibility that they may not retrn; some wold rather die at home than in a hospital. This is particlarly distrbing as Init diagnosed with cancer are already facing financial constraints, de to loss of wages, time off work, baby-sitting costs,disrption in family rotine and interrption of family spport. For those retrning home, post treatment, access to specialists is limited, therefore follow-p appointments are difficlt to maintain. Weather, commnity events and availability of the specialists all contribte to the sccessfl attendance of appointments. A strategy to consider wold be to connect Init commnities to specialists via tele/video commnication. This wold allow Init to remain in the commnity, avoid travel for a 10-15 minte appointment, and promote commnication between health care staff, the patient and family. It has been noted that Init facing a cancer diagnosis may opt ot of treatment becase it typically means leaving their homes, commnities, and spport from family and friends. Init are also aware that once they leave, retrning may not be a possibility. Many Init wold prefer to die at home and not in a hospital. Palliative Care Palliative care involves a partnership between the person who has cancer, his or her family and friends, and the members of the health care team. This team may inclde the services of a doctor, nrse, social worker, conselor and spirital advisor. In many Init commnities palliative care services are virtally nknown and non-existent. Care of the dying is done by family members who often lack appropriate spport and skills. Init reqire eqitable access to palliative care services, no matter where they live. The Canadian Cancer Control Strategy shold address isses sch as: lack of service coordination between primary care, cancer treatment and palliative care service. These services shold be eqitable throghot Canada.
Barriers to Treatment All cancer patients may experience challenges sch as: ncertainty, fear, economic, changes in family or marriage, and difficlties of treatment. Init may experience these challenges too bt have additional stressors that are niqe to Init, described below. Jrisdictional Isses Init mst cope with a complex and fragmented health care system that is nder territorial, provincial, federal and Init jrisdictions. Social Isolation Social isolation is a major stressor for Init ndergoing cancer treatment. Since Init need to attend sothern hospitals, they are away from their commnity, family and friends for a long period of time. A fortnate few may have an escort or interpreter to spport them bt this is infreqent with no consistency of who is able to receive this spport. Physical Isolation The geographic areas in which Init live are isolated commnities. Isolated commnities have high cost of living and it costs a lot more for health services. Isolation is a factor that acconts for the difficlties in retaining and recriting permanent health care providers. Isolation also limits what health services are available de to lack of infrastrctre from the high cost of bilding. Langage & Cltre Langage barriers and cltral divides range from misnderstandings, conflicting social norms to otright racism. There is a lack of plain langage information in the Init langage, casing nilingal patients to rely on an interpretation by a bilingal, English and Init langage speaker. It is also difficlt to translate cancer terminology into Init langages. Commnication De to langage and cltral differences, commnication is a major barrier for Init who are receiving care in rban hospitals. It is difficlt for many Init to participate in developing a care plan that is cltrally acceptable. Stress on Families The families of Init cancer patients are likely to experience stress from being nable to afford the high airfare to spport relatives who needed to travel for treatment. Information for the family may be limited or be delivered in sch a way that it is inaccessible and heightens ncertainty. Lack of Aftercare When an rban hospital retrns a gravely ill patient to a home commnity with the expectation that the family will provide palliative care, the family may be withot respite spports and may experience distress cased by their cltral and spirital beliefs abot dealing with dying and death in the home.
FACT SHEET: HUMAN RESOURCES Init have the following national priorities in health hman resorces: To spport Init families, children, yoth and stdents in bilding a solid fondation for edcation and careers in the health field To engage Init as health professionals and health care workers To spport crrent health care professionals working in Init regions in order to increase retention and cltral competency To increase knowledge of the crrent health hman resorces sitation in Init regions and what is reqired for parity with mainstream Canada How to achieve these priorities? Priorities Init-specific programming and research Inclsion of Init ways in health and healing Hman Resorces Isses Most Init commnities have commnity health centres bt many have serios hman resorces gaps sch as: nder staffing, low staff retention, some centres only have staff for part time positions and training levels vary. Commnity health workers in Init commnities are visible and accessible bt they freqently are overbrdened with a broad range of dties and lack resorces to provide information and spport to clients. Init face a hge shortage of doctors and nrses to provide optimal health care. According to Stats Canada, on a srvey of health indicators in 2006; 84% of Nnavt residences and 51.2% of NWT residences report having no reglar doctor. Wellness clinics are often closed or cancelled de to lack of staff and transportation cancelled to appointments de to inclement weather. The 2001 Censs indicated the following nmbers of Init working in health careers: Flexible training and delivery Fnding at the local commnity level that reflects commnity s need Networking opportnities for stdents, health care workers and health care professionals 80 Nrses, 10 Midwives and 185 assisting occpations in health. ITK is also aware that there are less than 10 Init physicians.
FACT SHEET: RESEARCH & SURVEILLANCE Init-Specific Data The gathering of accrate and timely data is an essential first step in determining the natre and extent of cancer among Init. Crrently there are hge data gaps; more comprehensive, Init-specific information is reqired on sch variables as age, sex, smoker or non-smoker, medical history, types of cancer, treatments selected, srvival and sccess rates of cancer diagnosis, treatment and essential care. Init-specific data The gathering of accrate and timely data is an essential first step in determining the natre and extent of cancer among Init. Crrently there are hge data gaps; more comprehensive, Init-specific information is reqired on sch variables as age, sex, smoker or non-smoker, medical history, types of cancer, treatments selected, srvival and sccess rates of cancer diagnosis, treatment and essential care. An Init-specific Cancer Registry wold collect and collate cancer information from all for Init regions. By establishing an Init ethnic identifier within each province and territory throgh patients self-identification, Initspecific data cold be analyzed at the national, regional and, when possible, local levels. The tagging and analysis of Init-specific information, as opposed to Aboriginal information, is an essential step in determining the scope, scale and natre of the threat cancer poses to Init. Research There are significant gaps in or knowledge of the extent, natre and impact of cancer among Init. Increased and improved research with an Init-specific focs is needed to nderstand the rising incidence of cancer the poplation is experiencing. Most North American research on Init and cancer is recent, and relies on very small samples. Research has been frther constrained by the fact that most cancer data records do not identify ethnicity, making it impossible to isolate information on Init cancer rates. Immediate research is reqired in (bt not limited to) the following areas: Hereditary links; Change of diet, and its impact on cancer rates; Environmental polltants in Init regions, and any impact on cancer rates.