Thirty Years of Grassroots Advocacy and Support – HIV Edmonton’s Story
Every day, the world is witness to history in the making as medical experts and political officials continue to determine how best to respond to the demands of the ongoing COVID-19 pandemic. Despite approaching the second anniversary of the first recorded case, it seems we are continually learning new things about the disease that reshape our understanding and corresponding strategic measures to mitigate the impact on people around the globe. Positive stories seem to be few and far between outside of the mass rollout of vaccines. Despite this, there have indeed been some indirect benefits coming out of this pandemic.
The development of messenger ribonucleic acid (mRNA) vaccines in combating the pandemic, while relatively new in application, have been studied for decades as a new way of fighting various diseases. Though the primary focus has obviously been given to the immediate threat of COVID-19, researchers have been looking at other epidemic, pandemic, and endemic disease as potential benefactors of newly utilized mRNA technology. One example of such a disease includes human immunodeficiency virus (HIV).
Although HIV has a long history with tremendous research dedicated towards its eradication, the nature of the virus has made it challenging for experts to accomplish. At the risk of oversimplifying an incredibly complicated area of study, this has been due to the ability of HIV to “hide” inside the body’s T-cells. As we write this article, Moderna has been working on a trial to test an HIV vaccine they have developed using mRNA technology that is designed to activate “naive B cells” that eventually result in the creation of antibodies. There are also reports of a clinical trial conducted by University of Oxford researchers testing the HIVconsvX vaccine that claims to use the T-cells rather than broadly neutralizing antibodies.
While the development of these vaccines gives plenty of reason for hope, eradicating this disease is something that is still years from becoming reality.
Thankfully, those who contract HIV are able to live long and full lives thanks to treatments available – a stark contrast from the early days of the pandemic in the 1980’s. While a positive HIV diagnosis is no longer the death sentence it once was, positive individuals require treatment for the remainder of their lives to mitigate the risk of worsening condition and transmission. Unfortunately, there still remains no cure. If left untreated, HIV can still progress into acquired immunodeficiency syndrome (AIDS).
While HIV has been an indirect benefactor of the COVID-19 pandemic when it comes to advancements in medical technology, COVID-19 has created many indirect challenges such as maintaining public awareness for other public health concerns.
That is where grassroots organizations enter the equation.
One such organization in the Capital Region is HIV Edmonton which was founded during the global outbreak in the 1980’s. The organization quite literally began around a kitchen table by a group including former Edmonton city councillor, Michael Phair, to respond to the impact of the pandemic in the city. Today, the organization exists to accomplish Vision: Zero – zero new HIV infections, zero stigma, and zero AIDS-related deaths.
Grassroots organizations that rely on donations to provide services were significantly impacted by the pandemic as individuals people around the province were laid off, sick, or otherwise less fiscally able to pursue philanthropic efforts that benefit charitable organizations. This forced them to find new ways of creating community engagement and to raise funds to support their clients that rely on their services.
This year will mark the thirtieth anniversary of the organization’s AIDS Walk/Run on September 18th. The event serves as the organization’s largest fundraiser of the year, an event that was forced to pivot in 2020 due to COVID-19 public health restrictions. With that said, the event is as much about awareness as it is about fundraising.
HIV Edmonton’s executive director, Catherine Broomfield, discussed why the walk is so important.
“After 29 years we debated whether walks and runs are passé, too ‘old school’ – but it’s our 30th! So, for us it’s about honouring the activism of the past; a reminder of the present struggles – a reminder of the present struggles of Edmonton’s higher than average rates compared to provincial and national rates.”
Canadian, Albertan, and Edmontonian specifically, HIV transition rates are still higher than one would think. And the walk/run provides an opportunity to encourage people to get educated or consider getting tested in a more relaxed atmosphere. It’s also about celebrating community, togetherness and belonging - looking to a hopeful future.”
In 2020, there were 119 new cases of HIV in the City of Edmonton, marking a 7% increase from the previous year. According to UNAIDS, there were about 1.5 million new cases worldwide, accounting for 37.7 million active cases in 2020. While this numbers are still staggering, those who live with HIV today have better resources than were available during the 1980’s outbreak.
“Back then, few could have imagined that advancements in treatment, testing and care would enable someone diagnosed with HIV to take antiretroviral therapy daily reducing the viral load in the blood to undetectable meaning that the virus cannot be sexually transmitted to others. Or that those with HIV would not die of AIDS but live into old age and experience chronic disease issues like diabetes or heart conditions. Or that a self-testing kit would be developed. These possibilities were unthinkable then. When I consider this legacy, it makes me hopeful. I mean, who knows what another 30 years might bring.”
Goals like HIV Edmonton’s ‘Vision: Zero’ highlight the importance of grassroots organizations in society. While governments and non-governmental organizations (NGOs) are able to provide funding towards research and outbreak response, grassroots organizations are solely focused on filling the gaps left by government to provide boots on the ground services and additional funding. Although we have learned much about the spread of HIV in the last number of decades, one of the biggest fights for organizations like HIV Edmonton is against continuing stigma that those who live with the disease face.
The annual walk is an opportunity for those in the HIV Edmonton community to connect and support one another while erasing the stigma that is still associated with the disease.
“For HIV Edmonton and the many members of our community who have been living with or affected by HIV and AIDS, the recognition that 30 years has passed since the organization was started around a kitchen table is astounding”
That initial desire to demonstrate solidarity and support to friends in Edmonton who were stigmatized and dying of AIDS has flourished into the network of services, programs and education activities impacting hundreds of individuals and their families every year.”
The walk/run will be more important than ever for HIV Edmonton in 2021. With a growing client base, the organization has begun to offer more services to a larger group of people which, of course, makes fundraising even more important.
“While in 2021, our scope of services have expanded beyond HIV and AIDS to include sexually transmitted and blood-borne infections (STBBI) like Hepatitis C, Syphilis and others, we remain steadfastly committed to championing issues of social justice and health equity for our community. Stigma, discrimination, and racism are as much a reality today as they were 30 years ago. I reflect on that often.”
The world has witnessed what is possible in the way of public health response when collective efforts are applied with a common goal. With that said, we have also witnessed how difficult it can be to achieve a public health goal when there is not necessarily universal alignment in place. The same experiences can, of course, be applied to other long-standing health issues as we see with HIV and other diseases. Part of the grassroot role is to ensure that the priorities of those who live with a disease or work on the front lines are reflected and advocated for to both the public and various orders of government. Initiatives like the AIDS Walk/Run are small ways of making a big impact in driving the message to those who need to hear it.
HIV Edmonton welcomes all to participate in the AIDS Walk/Run on September 18th or to donate at hivedmonton.com.
