The Experiences of a National Aboriginal Youth Rapporteur at the Ontario HIV Treatment Network’s (OHTN) Research Conference
By Carrie Robinson, National Youth Coordinator
Carrie Robinson and Joey Dore (Ontario representative of NAYCHA) were sponsored by the Canadian AIDS Treatment Information Exchange (CATIE) to attend OHTN’s Research Conference in Toronto from November 14-15th, 2011. The conference showcased research findings in basic and clinical science, epidemiology, socio-behavioural, prevention, intervention and community-based research related to HIV and AIDS.
To fulfill the role of being Community Rapporteurs, it was important for Carrie and Joey to maintain contact with the community rapporteur team through debriefing sessions hosted each day by CATIE. At the debriefing sessions, rapporteurs reported on key aspects of the conference and discussed their experiences for CATIE to input into a Community Report after the conference. For example, at every session attended rapporteurs completed a questionnaire indicating the following:
- The name of the session and its presenters;
- The major theme of the session;
- Three key points from the session;
- Important lessons the session holds for People Living with HIV and /or those working in HIV-related Service Organizations; and,
- Important quotes or phrases that stood out.
In particular, Carrie and Joey chose to report on the Aboriginal, Youth and Criminalization content of the conference.
There were four sessions/presentations that were dedicated to Aboriginal People and HIV and AIDS and research, including: Visioning Health: Arts and Positive Aboriginal Women’s Exhibition; Visioning Positive Aboriginal Women’s Research; Risk & Resilience in Aboriginal Peoples; and, Opening the Circle for Aboriginal Research in HIV. According to CATIE’s OHTN Research Conference Community Report, issues discussed involved the following:
- Using arts and strength-based approaches to discuss health while combining aboriginal methods and technology to create community has created long overdue opportunities for women’s empowerment, community building and the creating on safe spaces to support positive aboriginal women to become a self-actualized participant in research.
- Depression in HIV+ Aboriginal people is very common and we need more mental health supports for this community as the diagnosis may not be the only concern that needs to be addressed in their lives.
- HIV diagnosis is a time when many Aboriginal people turn to traditional practices and medicines; this is an opportunity to (re)connect with community.
- In partnership with All Nations Hope AIDS Network, A-Track will be piloting in Regina very soon and will be monitoring HIV, behaviour and socio-demographic factors among Aboriginal people in Canada.
There was one session dedicated to Youth entitled: Widening the Lens: Digital Storytelling with Youth. According to CATIE’s OHTN Research Conference Community Report, discussion of the following issues arose during this session:
- Creating and supporting safe environments for youth to talk about HIV is an important part of prevention efforts.
- Digital storytelling can be a healing way to express stories and experiences but it is challenging so adequate support is important.
- Identity, autonomy and self-esteem play a vital role in youth health.
- “The experience should be healing, not haunting.”
In general, being a rapporteur at the OHTN conference was a great way to get involved as an Aboriginal youth working in the field of HIV and it was possible to learn a lot about current research on HIV and related issues from scientists, academics, and even peer research assistants. The rapporteur is kept very busy within the conference sessions (reporting), and after the conference (debriefing sessions).
However, one of the downfalls of being an Aboriginal youth rapporteur is learning directly from scientists and the medical profession. It can be difficult to jump in and follow presentations with complicated and scientific charts about HIV research and clinical trials. The positive aspect of learning directly from the medical researchers is the opportunity to ask questions and bring the complicated research to life. For the most part, the researchers were great at explaining what charts indicate and how they apply to the lives of People Living with HIV and/or people working in HIV.
A Ph.D. student was able to attend CATIE’s debriefing session with the rapporteur team to explain the discussions at the conference about finding a cure for HIV. For example, in a very rare and interesting case, a man living with HIV (“the Berlin patient”) also had a blood cancer called Leukemia. His treatment involved a bone marrow stem cell transplant in 2007. The donor was immune to HIV and the Berlin patient was cured of both Leukemia and HIV. Scientists and researchers are trying to learn what they can from the very rare case, but it will be very difficult to replicate the unique circumstance and apply it to other situations of People Living with HIV.
For more information about the OHTN conference can be found at: www.ohtn.on.ca
National Aboriginal Youth Council on HIV and AIDS and AAAW
On December 1st, 2011, the National Aboriginal Youth Council on HIV and AIDS (NAYCHA) travelled to Canada’s capital of Ottawa, ON for Aboriginal AIDS Awareness Week (AAAW). In addition to team and skill building as a council on November 30th, the youth traveled from different provinces and territories to make their voices heard as more than 50% of the overall Aboriginal population in Canada is under the age of 25. On World AIDS Day, December 1st, NAYCHA members attended the AAAW launch events and spoke on the importance of leadership in addressing the realities facing today’s youth.
The over-representation of Aboriginal youth in HIV test reports and AIDS diagnoses strongly suggest a need to lower HIV and AIDS levels among Canadian Aboriginal youth. Between 1979 and 2008, 19.3% of reported AIDS cases among Aboriginal people were between the ages of 15 and 29. This was compared with the 14.8% of cases among non-Aboriginals in the same grouping in the Public Health Agency of Canada’s HIV/AIDS Epi Upate, July 2010.
To address the realities behind these numbers, a National Aboriginal Youth Strategy on HIV and AIDS in Canada (NAYSHAC) was created by NAYCHA with a vision that all Aboriginal youth in Canada need to receive empowerment, support, hope and courage to become Aboriginal youth leaders in lowering infection rates; promoting human rights to be educated and talk about HIV and AIDS; eliminating stigma and discrimination about HIV and AIDS; and, to support Aboriginal People Living with HIV and AIDS (APHAs).
Jessica Yee, Chair of NAYCHA and the Executive Director of the Nation Youth Sexual Health Network, referenced the importance of involving Aboriginal youth in planning around HIV and AIDS:
“The time has come for young people to be heard, and we look forward to involving our National Aboriginal Youth Council in every way possible as representative members of their respective communities, provinces and territories. I am reminded o a teaching of the Haudenosaunee Great Law of Peace, which says: ‘In every deliberation, you must consider the impact on the seventh generation,’” NAYSHAC.
AAAW is a time for connecting national Aboriginal organizations, government partners, healthcare providers, and community leaders to support change through their own action and by supporting the action of others. NAYCHA is part of our Aboriginal response to HIV and AIDS: It takes a whole community to support change!