Taken from the Truth and Reconciliation Plenary during Summit 2018
On December 1st, our communities reflected on another World AIDS Day, and so began Aboriginal AIDS Awareness Week. At Community-Based Research Centre (CBRC), we are using the opportunity to continue our path of Truth and Reconciliation by engaging our Indigenous partners and Elders, but also by recognizing our wrongs, or in this case, missed opportunities, with the commitment to doing better. Before we can have reconciliation, we must have truth. And the truth is, when it comes to Pre-Exposure Prophylaxis (PrEP), we let Indigenous people down. Again.
A significant factor in the success of PrEP in BC is its availability – it’s fully covered and relatively barrier-free. If you are at risk, and you can find a doctor or nurse practitioner to prescribe it, you can get it. This is making a huge difference in BC’s response to HIV, especially compared with other provinces. Which begs the question, ‘if access and availability of PrEP are the secrets to success, why aren’t more Indigenous people on it?’ Especially since it’s been free and accessible for those with Non-Insured Health Benefits (NIHB) since 2016 (two full years before the universal program in BC).
That’s right – two years before anyone else had government funded PrEP, Indigenous people had access. Yet, only a handful of Indigenous people got on it. In 2018 alone, almost 500 Indigenous people contracted HIV in Canada. Many of them could have benefited from PrEP, but either didn’t know about it or didn’t know they could access it free of charge.
CBRC and other organizations in the HIV movement missed an important opportunity, and the result is one that is all too familiar to Indigenous people. While we were busy demanding PrEP for all, we failed to recognize and promote the access already available to Indigenous people. It’s sobering to think how many infections among Indigenous people since 2016 that could have been prevented, if we had done our jobs better.
When I first learned that First Nations people had access to PrEP, I co-hosted a webinar with CATIE and we invited a presenter from the First Nations Health Authority to update us on PrEP access and uptake for Indigenous people. The number of Indigenous people accessing PrEP in BC was less than 20. More than 70 people from 30 organizations attended that webinar. Was the result a huge push for Indigenous people to access PrEP through NIHB? It should have been, but it wasn’t.
In fact, it was like the webinar never happened. We continued fighting for PrEP access without recognizing the potentially game-changing fact that Indigenous folks already had access. This happened time and again, with CBRC and our partners launching campaigns to fund PrEP, yet we didn’t dedicate resources to promote PrEP to those who already had access.
It’s another example of the colonial state looking after its own but failing Indigenous people. There are rare examples of Indigenous communities having an advantage, but for once, this was the case, yet those of us who had the power to promote that advantage, failed. We failed Indigenous people, we failed in our path toward Truth and Reconciliation, and we failed the HIV movement.
In the aftermath of this missed opportunity, our colleagues at BCCDC wrote a paper “Truth and Reconcilia(c)tion: Summary Review of First Nations and Inuit access to HIV Pre-Exposure Prophylaxis (PrEP),” which CBRC has endorsed. So what went wrong? Here are the findings:
- Systems implementation failure of not prioritizing Indigenous peoples’ HIV prevention needs following Health Canada approval of PrEP
- Community based organizations, health care providers, pharmacies and other agencies have limited or lack of knowledge of the access pathway to healthcare coverage and scope of benefits for First Nations, Inuit and Metis people and communities
- Lack of collaboration and coordination between and within community based organizations, government agencies, health care providers, pharmacies and health authorities related to PrEP access
- Lack of knowledge translation by those with proficient knowledge of antiretroviral access pathways such as HIV care or public health service providers
- Lack of First Nations and Inuit people contributing at policy and advocacy decision tables
The report made the following recommendations, endorsed by CBRC and other organizations:
- Include Indigenous peoples in all stages of policy development, promotion, and knowledge translation
- Improve and promote understanding of the unique care access pathways for First Nations, Metis and Inuit people among health care providers and community based organizations
- Health leaders should improve collaboration between Indigenous peoples, health care providers, health authorities and community based organizations
- Intentional consideration of how policies may uniquely impact Indigenous peoples given the impacts of colonization and health care access pathways for the community
- Promote reflective activities to highlight past mistakes to minimize these in the future and stand in better relations with Indigenous peoples
While we have not yet ‘reached zero’ new infections, there is a lot to be optimistic about – Pre-Exposure Prophylaxis (PrEP) and Treatment as Prevention (TasP) are working. Word is getting out that Undetectable equals Untransmittable and for the first time in decades, we have a new tool to prevent HIV. One by one, provinces are falling in line to subsidize, or in the case of BC, Alberta, and Saskatchewan, fully pay for HIV treatment and PrEP – and we’re seeing results. BC continues to report fewer and fewer new HIV infections, even among the most vulnerable. But for some, these prevention tools are still out of reach.
That’s where allyship plays an important role. It was an Indigenous person who sounded the alarm on the lack of PrEP promotion to Indigenous people, but that responsibility should be shared by Indigenous and non-Indigenous people alike. Being a good ally means speaking to the struggles and barriers faced by others, not just ourselves.
As we prepare for the new year, I hope we can all agree that we need to do more to bring justice for Indigenous people – for those of us in the HIV movement, we still have a lot to do to bring down rates of HIV, get more people on PrEP and tell the world that undetectable equals untransmittable. Let’s get to work.
Written by Jody Jollimore, Executive Director.