Sharyle Lyndon, Antonio Marante and Claudette Cardinal
In British Columbia, the first full week of June has been celebrated as “Seniors’ Week” to acknowledge the contribution of seniors in our communities. During the 2020 Seniors’ Week, on June 5th we will also commemorate the Day of HIV/AIDS Long-Term Survivors, launched by Tez Anderson, founder of the US national movement Lets Kick ASS (which stands for AIDS Survivor Syndrome). One of our community’s own long term survivors, Sharyle Lyndon, is a Peer Research Associate (PRA) with the Thrive project: a community-based investigation of the home and community care needs of older adults living with HIV (OALHIV) in British Columbia. It was Sharyle’s advocacy around concerns with public funding cuts affecting her home care services a few years ago that prompted Drs. Surita Parashar and Kate Salters to secure funding to better understand this important issue and that eventually led to the creation of Thrive.
Recently, the Thrive team has completed the first study objective, describing home and community care service use among OALHIV within the STOP HIV cohort. The Thrive team is now recruiting OALHIV who have ever used home and community care services in BC to conduct qualitative interviews documenting stories of home and community care access, relationships with home care workers, and aging with HIV. In the future, the research team plans to use ‘service access mapping’ to spatially characterize access and use of services by OALHIV. The team is excited about innovating in the context of the COVID-19 pandemic response – the interviews have already been shifted to phone instead of in-person, and the mapping interviews will be adjusted accordingly.
This year, British Columbians will celebrate their seniors during June 3-8, and it will be a different celebration as our province and the world is in the midst of the COVID-19 pandemic, to which our elders are particularly susceptible. Calls to protect vulnerable seniors have been even more frequent during this time. The usual motto of Seniors’ Week has been to acknowledge the contributions that seniors have made to society, and continue to make through volunteering and caregiving. Seniors’ Week was created to give us an opportunity to stop and say thank you to the previous generations – each in our own way. Every Indigenous community honours their elders in unique ways, and as Claudette Cardinal, Peer Indigenous Research Associate with Thrive/COAST, points out, elders are irreplaceable in the spiritual guidance they give and in sharing their wisdom. Elders in Indigenous communities traditionally are listened to without interruption, but unfortunately, according to Claudette, much of their wisdom is lost now because no one takes time to listen and record the stories of elders. The interviews conducted by the Thrive team have that exact purpose – to record and to relay the stories of our elders in the HIV community.
For me, every time I interview, I am learning… many participants have taught me a lot…this connection to people, I feel alive having that opportunity to connect to people.
– Antonio Marante, Peer Research Associate on the Thrive team
Presenting the research back to the community is an essential part of Thrive. The team has developed a number of resources informing and empowering OALHIV. These brochures provide helpful details about how to apply for home and community services, how to identify and avoid elder abuse, resources available to LGBTQ2S seniors, and services specific to Indigenous individuals and communities. An upcoming Thrive resource will focus on virtual health care, and services available to those receiving disability payments.
It can be confusing to understand who is considered a senior in Canada. Community centres host programs for seniors starting at age 55. In 2019, Statistics Canada cited 63 years as the average age at which Canadians retire. Perhaps the most common definition of a senior is 65 years, when they qualify for federal government financial benefits, such as CPP and OAS. To confuse matters further, under certain stipulations, a 60-year old person qualifies for similar benefits and payments as a 65-year old.
As part of our advocacy efforts at Thrive, we research various resources available to OALHIV. When we heard about the BC government announcing additional supports to family caregivers during COVID-19, and that certain people under 65 could qualify for these resources, we contacted the Office of the Seniors Advocate of BC with the request to clarify the eligibility for this new program. We have received the following helpful clarification that a person under 65 years old can be eligible for certain benefits reserved for “seniors” if they receive “seniors’ services.” Examples of seniors’ services include but are not limited to: HandiDart; Assisted Living, Long-term Care, Home Support, and Seniors Independent Living accommodation. With this clarification, the Thrive PRAs are excited to share with their community that OALHIV who are under 65 years of age and accessing home and community care are eligible for additional supports reserved for British Columbians over 65.
But what do these numbers mean for people living with HIV, a community which was devastated by the HIV epidemic in the 1980-1990s? If we do simple math, those who are 65 years old today were 40 in 1995, when the CDC announced that AIDS was the leading cause of death for Americans in the 25-44 age category , which means the HIV community we know today is missing a large number of its elders.
When you were diagnosed in early days you did not expect to see the next year, much less the next decade
– explains Sharyle
Things have been changing lately. Since the advancement and availability of combination antiretroviral therapy (cART) in places like British Columbia, as well as a commitment to Treatment as Prevention¨, HIV-related morbidity and mortality have decreased dramatically among PLHIV, contributing to a significant demographic shift. As of December 2016, the median age of all PLHIV in BC was approximately 55 years. The demographic shift occurring among PLHIV in Canada has been accompanied by a rise in co-morbid conditions and evolving healthcare needs. Management of multiple chronic conditions alongside HIV is now the rule, not the exception, among older adults living with HIV. This population is more frail, their aging process is accelerated with prematurely higher rates of cardiovascular disease, cancer and neurocognitive decline, and their life expectancy is 13 years shorter than that of their HIV-negative peers. Considering all this, a person living with HIV physiologically meets the senior profile at around 50 years of age – the age criteria used in the Thrive project.
There is much to celebrate in terms of what older adults living with HIV – both those who are with us today and those who are no longer – have gifted to their communities and beyond. Some of the incredible ways in which the HIV community came together to support one another and to advocate for their rights are: lobbying the government for free access to antiretroviral drugs, first time inclusion of patients in a medical conference at the 5th International AIDS Conference in Montreal in 1989, standing up against stigma and discrimination, and supporting one another through non-profit work, caregiving and practical help. As Sharyle recalls, “the entire community was my family. I could give and receive help from them.” The HIV community continues to help each other, and peer research is one of the ways it is done. Antonio loves to use his technical and research background to look for information in various databases and share that with the community. Claudette feels that as an Indigenous PRA she can bring her traditional ways of knowing and healing to the project. As for Sharyle, she finds purpose in negative experiences with her home care because it provides her with an opportunity to help others in the same situation.
This week, the Thrive team celebrates the invaluable contributions of our PRAs, who serve as the young-at-heart elders of our project. We are grateful for their wisdom, guidance, and unrelenting commitment to improving the well being of their communities.