AFN Sexual Health: HIV/AIDS Canadian Attitudes on HIV and AIDS: What the latest national survey is telling us. Insights and analysis from a First Nations Perspective April, 19th, 2012, Montreal, QC Prepared by: Jessica Demeria, Sexual Health Policy Analyst

Who We Are The Assembly of First Nations (AFN) is the national representative organization of the First Nations in Canada. There are over 630 First Nations communities in Canada. The AFN Secretariat, is designed to present the views of the various First Nations through their leaders in areas such as: Aboriginal and Treaty Rights; Economic Development; Education, Languages and Literacy; Health and Social Development; Justice; Taxation; Land Claims; Housing; and, Environment.

Situating the Context of HIV/AIDS and First Nations Colonialism has dramatically contributed to the poor health and socio-economic conditions in which First Nations currently reside, including the incidence and prevalence of HIV/AIDS. Colonialism is broadly defined as “the control or governing influence of a nation over a dependent country, territory, or people; the system or policy by which a nation maintains or advocates such control or influence.” Colonialism works at both the formal and informal levels to separate First Nations people from their territories, identities and ways of being. The ongoing consequences of colonialism must be understood when working with First Nations. Kinship and extended family is a way of life for many First Nations and having to leave one’s community to seek out treatment only increases the sense of displacement and creates more disruption and breaks within families and further deepens the impact of one’s loss and disconnection from culture. The experience has been likened to the Residential School system and the effects are similar; a loss of connection to traditional healing methods, loss of spiritual and familial ties, accessing services and treatment that are not culturally sensitive or respectful. These are all factors that need to be taken into consideration when we examine the experience of a First Nation individual living with HIV/AIDS; it is not just the diagnosis of a disease it is also the increased likelihood of increasing structural challenges and burdens associated with the effects of colonialism not experienced by Non Aboriginal peoples. Isolation from culture and community can lead to increased poverty, experiences of racism, language barriers, unstable housing and barriers in access to services. (PHAC, 2010) Marginalized or vulnerable populations within First Nations may include women, youth, two spirited people, injection drug users and homeless First Nations In some studies comparing Aboriginal and non Aboriginal people living with HIV/AIDS, APHA’s indicated that they have reduced access to medical treatment, increased food insecurity and experiences of racism when trying to secure adequate housing (PHAC, 2010)

Situating the Context of HIV/AIDS and First Nations (cont’d) What the current numbers do illustrate is that there is a significant over representation of First Nations, Inuit and Métis (FN/I/M) among HIV and AIDS cases in Canada. These numbers show that First Nations are highly overrepresented in the breakdown of identified AIDS cases, such that, of 605 AIDS cases: 442 identified as First Nations; 22 as Inuit; 44 stated they were Métis; and, 97 were unspecified Aboriginal. Currently the data that is collected by PHAC is not disaggregated so most of the numbers reflect the entire Aboriginal population for rates of HIV; First Nations, Metis and Inuit (FN/I/M). There is some limited data available of reported AIDS cases up to 2006 in Canada with the exclusion of Ontario and Quebec as they do not collect ethnic status (PHAC).

Situating the Context of HIV/AIDS and First Nations (cont’d) FN/I/M represent only 3.8% of the total Canadian population (2006 Census). The estimated prevalence of HIV/AIDS among FN/I/M in 2008 was 24% higher than the original estimation in 2005. In 2008, an estimated 4,300 to 6,100 Aboriginal people were living with HIV/AIDS; 8.0% of all prevalent infections and 12.5 % incidence for the same year. In 2008, FN/I/M in Canada had an estimated 3.6 times higher HIV infection rate than non-Aboriginal people. While First Nations, Inuit and Metis only comprise such a small amount of the overall Canadian population the fact that they comprise such a large total of overall infections in Canada is striking. This over representation needs to be addressed through appropriate and effective prevention methods. What is even more concerning is that the demographics of First Nations highlight the stark differences between Canadians and First Nations. Between 1996 and 2006 the First Nation population grew by 29 % while the general Canadian population did not see such a dramatic rise. The median age of First Nations is 25 years of age compared to 40 in the general Canadian population; 48 % the FN/I/M population is made up of children and youth aged 24 and under compared to 31% of the non Aboriginal population. First Nations are much younger as a population as a whole and this is also concerning as the highest rates for new HIV infections is in the youth population.

Situating the Context of HIV/AIDS and First Nations (cont’d) Aboriginal youth (15-29 years) represent 40.9% of all Canadian positive tests for this age group (Public Health Agency, 2010). HIV/AIDS has a significant impact on Aboriginal women in particular. During 1998-2008, women represented 48.8% of all positive HIV test reports among Aboriginal people, as compared with 20.6% of reports among those of other ethnicities. Among Aboriginal Canadians, the estimated proportion of new HIV infections in 2008 attributed to the IDU exposure category (66%) was much higher than among all Canadians (17%). It becomes quite apparent that a distinct and unique strategy is needed to address these numbers. The AFN is not an HIV/AIDS organization but as health is holistic this is a very important issue that requires examination as well as a concerted comprehensive national strategy to address the rates in First Nations communities. It is important that the AFN be a leader and continue to raise awareness of the epidemic of HIV/AIDS in our communities. Although treatment has advanced dramatically in the last twenty years we need to be cautious and not become complacent in the fight against HIV. We are witnessing particularly in self reported sexual practices amongst youth(RHS, 2008/2009) that not all First Nations Youth use contraception or condoms as prevention against STI ‘s or HIV. This is alarming as they cite a variety of reasons such as being under he influence of drugs or alcohol, not having a condom close etc. We need to remain ever vigilant that this is a disease affecting First Nations at a much higher rate than non Aboriginal peoples especially based on the small percentage of the overall population that Aboriginal people comprise in the larger general population. Other factors of

Testing In the National HIV/AIDS Survey, the main reason for testing was through blood donation but there is no ethnic data available to see if the same holds true for First Nations. There is some limited data available surrounding First Nations youth and attitudes towards testing. The study “AIDS is Something Scary: Canadian Aboriginal Youth and Testing” (Mill, Wong, Archibald et. Al, 2011) provides some insight to the barriers that youth face. 413 FN/I/M youth from all ten provinces and one territory participated in the mixed method study. Just over 50% of the youth that completed the survey stated that they had been tested for HIV, while 89.2% who were interviewed had been tested at some point (Mill, 2011). While the data in the national study indicates that about one half of Canadians have been tested for HIV the numbers require closer examination. There is currently no data collected for First Nations through blood donation. On data available from OneMatch Stem Cell and Marrow network the numbers show that in Canada First Nations, Inuit and Metis comprise less than one per cent of all donors in the databank. This may illustrate that First Nations, Inuit and Metis may not participate in the blood donation process as highly as other Canadians.

Testing Some of the reasons for testing: having sex without a condom (43.6%); being pregnant or thinking they were pregnant (35.4%); part of regular testing (28.9%); feeling like they were at risk (27.5%); being in a new relationship (23.7%); and, part of the sexually transmitted infections (STI) screening (20.9%). Within the larger cohort of FN/I/M, the demographics of the group with the highest testing rates were: First Nations older youth; lived outside of a First Nations community; received some type of social assistance; had a history of STIs; and, for females, had a history of pregnancy (ibid). Many youth expressed feelings of invincibility; many of the comments that were expressed illustrated as well that youth felt they were not at risk as they did not feel unwell. Some of the barriers that were identified to testing included; knowing the nurse was ranked significantly high while some indicated that they were afraid of the diagnosis in general.

Testing Zin (pseudonym), a First Nations youth, stated, “It’s probably the worst thing you could ever hear, depending on whether you care or not…I’m sure it would be like the end of the world, like a wall could come crashing down”. Other factors identified that limited youths decision to get tested included: the fear of discrimination 13.3%; fear of people finding out 10.8%; and, that they felt “nothing could be done about it” 10.8%. Rates of HIV infections between 1998 and 2006 for FN/I/M comprised 1/3 of new infections in those under the age of the 30 compared to 21% of non-Aboriginal cases it is clear that we need to focus on preventing new infections within our youth. As the First Nation population on the whole is younger than the Canadian population these thoughts and attitudes surrounding testing are alarming; It is clear that there is a significant lack of data on HIV testing and First Nations youth but these early indications illustrate the urgent need for more education and awareness tools

PHAC, 2010

PHAC, 2010

Conclusions While it has become clear that HIV testing and services need to be accessible and appropriate for youth, there is a significant lack of STI “youth-friendly” services (Shoveller, 2009). What this translates into is the need for relevant, culturally safe testing programs for STI’s and HIV prevention programs targeted at the most vulnerable populations including youth. Prevention and education programs need to be tailored to facilitate reductions in future infections.

Next Steps The AFN will continue to increase awareness and decrease stigma surrounding HIV/AIDS through the broader spectrum of sexual health. The AFN will continue to engage in strategic partnerships and networks to foster knowledge exchange to work towards alleviating the higher HIV/AIDS rates in First Nations communities. First Nations need to work together to address these rates and ensure that the prevention and education strategies are tailored to meet the needs of those most at risk and marginalized within the Canadian system.

Next Steps The AFN will continue to try and increase awareness of the current status of First Nations and HIV/AIDS rates on an international level. The AFN will continue to be respectful and responsive to the needs of First Nations living with HIV/AIDS in Canada. The AFN will provide support to Aboriginal AIDS Service Organizations (AASO’s) and continue to work in partnership with AIDS Service Organizations (ASO’s).

For more information please contact: Jessica Demeria, Policy and Research Analyst jdemeria@afn.ca or 1-866-869-6789 ext. 248 www.afn.ca