Long-Acting Medication Access with Sarah Chown

Long-acting HIV medications can be a game-changer for many of us living with HIV. But getting them isn't as easy as it should be. We talked to Sarah Chown, AIDS Vancouver's Executive Director, to learn more. 

YouthCO: Could you talk about the current state of long-acting medication access in BC?

Sarah: Right now, the only way to get access to long-acting medication is a case-by-case approval process that requires additional paperwork and proof that you cannot continue oral medications. That's different than what's happening in other parts of the country. Folks living with HIV are calling AIDS Vancouver and our five partner organizations to say, ‘I got rejected’ or ‘I’m not able to get access to long-acting medications.’ Our campaign is focused on ensuring that folks living with HIV get to make decisions about their own health in ways that make sense to them.

YouthCO: There's a lot there around agency, autonomy, and transparency. I was reading about the transparency in the decision-making process. Is there anything that you could share about that?

Sarah: The current decision-making process isn't between a person living with HIV and their healthcare provider—which is what most of us are used to for other types of healthcare. Instead, a person and their healthcare provider would decide to pursue long-acting medication, the healthcare provider would fill out a form, and then the health care provider would need to provide an additional letter proving that the patient is unable to take oral medication. That last criterion is arbitrary. It's not what Health Canada has recommended. We haven't seen evidence recommending it. This places healthcare providers in the position of having to demonstrate that their patients meet an arbitrary criterion. The approval decision is then made by folks at the BC Centre for Excellence. We do not know specifically who is making these decisions at the Centre. In general, it is people who have not met the patient, and do not get to hear from them directly about why long-acting treatment will be really beneficial for that individual.

YouthCO: What reasons have people shared for considering long-acting medication?

Sarah: Folks have much more control over sharing their HIV status when they aren't worried that a parent, partner, roommate, or a person at work will see them taking medications or stumble across those medications and ask, ‘What is this medication?’ and then accidentally find out that person’s HIV status. We know that accidental disclosure can put people at risk of physical violence, being fired from their jobs, or being kicked out of their homes. While these situations do not reflect the facts of living with HIV today, they are too common in our communities.

YouthCO: Mhm, for sure. Given the extensive paperwork in the application process, are there specific communities that might face more challenges in accessing long-acting medication?

Sarah: Absolutely! One key part is that healthcare providers are so busy in their day-to-day work. We super appreciate the work that health care providers are doing to meet the needs of people living with HIV. We also know that healthcare providers often don’t have time to say, ‘Hey, have you thought about this medication?’ It’s also difficult for healthcare providers to say ‘This medication is actually really hard to access and it’s going to make me have to do a bunch of extra paperwork, and you may not even be approved.’ So, we know that healthcare providers aren’t offering this as proactively as they might if the process was easier.

Because of this, those seeking access to long-acting medications are often folks who feel confident and comfortable enough telling their busy healthcare provider, ‘Hey, I want to make some time to talk about long-acting medications.’ We know that people feel differently comfortable talking to their health care providers. Our colleagues at YouthCO and the Afro-Canadian Positive Network have shared that it's hard for young people and Black people to have those conversations with their healthcare providers. In our day-to-day work, we know that this is gendered, racialized, and based on age. It influences who tends to seek medication and who has a more realistic chance of taking that first step to talk to a healthcare provider.

YouthCO: Right, that makes a lot of sense. Thank you. Could you talk about the work that AIDS Vancouver is doing to support access?

Sarah: Over the past year and a bit, we've been asking questions to the decision makers within the BC government, including the Ministry of Health and the BC Centre for Excellence in HIV and AIDS. Our focus is on understanding what's happening here in British Columbia. The good news is that there's now some publicly available information about long-acting medications. The bad news is that this information still puts up a ton of barriers for folks who want this medication. Until every person living with HIV who is medically eligible and wants a long-acting option is approved, we're going to continue to ask questions.

We’ve been super lucky to partner with several healthcare providers and non-profit organisations who also find that this issue is coming up in their daily work and communities. Through these partnerships, we've met a broad group of people, gained media attention, and collected signatures for our petition. We’re going to continue to that work alongside our lovely partners!

YouthCO: That’s great to hear! Earlier you mentioned barriers, could you talk more about what some of those barriers are?

Sarah: Yeah! A specific barrier that we're highlighting that there is an arbitrary criterion that is really hard to prove. It's really hard to prove that you cannot take oral medication, and the reasons that are being accepted as proof are inconsistent. Taking oral medications can be hard for different reasons. We hear from some people that taking medication can be a daily reminder of trauma of being newly diagnosed with HIV. Taking a daily pill can also be a constant reminder of people in our lives who have passed away from AIDS-related complications. Daily medications can be hard for people living in a multi-person home and who aren't ready to talk about their HIV status with the people that they live with. Daily pills can have side effects. People can feel nauseous and gross and not want to do it. There are tons of different reasons why people might not be able to continue oral medications! But, we know that some of those reasons are being rejected and aren't necessarily seen as valid by the Centre. This arbitrary criterion is a barrier. It doesn’t make sense and it creates extra work for everyone involved when trying to choose this treatment.

YouthCO: Is there any feedback provided to individuals if their applications are deemed ineligible?

Sarah: I’ve only seen redacted information, but all I have seen is, ‘Person rejected because there's not enough information about why they cannot take oral medication.’ I don't know if there's more specific information that people are getting.

YouthCO: Are there specific changes that you believe would be most effective in improving access, and what are some of the steps along the way?

Sarah: I think the most effective thing is to ensure that everyone has access to this medication regardless of where they live. Status First Nations people living on the other side of BC’s borders would be approved for long-acting medication if they are medically eligible. They wouldn't need to prove they can't take oral medication. One of the big concerns that we have here is how colonization and borders are influencing medication access. We would really like to see long-acting medication available without these special restrictions. That would mean removing arbitrary criteria and allowing patients and their healthcare providers to make decisions that makes the most sense.

YouthCO: What steps can folks take to support AIDS Vancouver with long-acting medication access?

Sarah: YouthCO and our five other community partners on the campaign have been a great help! Together, we're encouraging people to visit our website, www.aidsvancouver.org, and take a few minutes to contact your government representative. On the website, you can send a letter to your MLA, and we hope this will prompt questions within our provincial government, so that we can have a more appropriate process and people can have access to something they been waiting a really long time for.

YouthCO: Are there any other last pieces that you wanted to share?

Sarah: Yeah! We have an approved drug. We have healthcare providers that want it for their patients and the technical ability to make it happen. It’s difficult to see our government continue to tell a story and create a process that leaves out the voices of people living with HIV. Folks are telling us time and time again that they want this option for themselves and their communities.

YouthCO: I have one final question! What would change? What would the world be like with better access to long-acting medications in BC?

Sarah: Oh my gosh! I think of young people who would feel much more confident going on field trips and having sleepovers if they weren't wondering about what was going to happen to their HIV medications and how they could fit them in without people asking questions. I think of the parents and caregivers of those young people who would lose a little bit less sleep at night, knowing their kids are taking their medications. I think about folks who really struggle with the daily reminder of HIV through medication. I imagine the joy and space they may find in their lives, away from the grief and the loss that can be connected to an HIV diagnosis, or the daily burden of pill logistics. Improved access could offer people the freedom to choose when to share their status without compromising so many important parts of their lives, just because of the weight of HIV stigma. It’s about more joy, more space, and more control—all these great things that I really wish for everyone, including folks living with HIV.

YouthCO: Thank you! I love that vision and I’m very excited to live in that world. Thank you for all the work that you all are doing to make it possible.

Sarah: Thanks for being a part of it!