Moderna announced recently that it’s starting trials for a new vaccine against HIV, the virus that causes AIDS. It’s based on mRNA, the same technology used in the company’s COVID-19 vaccine.
KTOO’s Yvonne Krumrey sat down with Robin Lutz, the executive director of Alaskan AIDS Assistance Association — Four A’s — to talk about what the prospect of a vaccine means in Alaska.
The following transcript has been edited for length and clarity.
Yvonne Krumrey: Can you just start by telling me a little about Four A’s?
Robin Lutz: Sure. So Four A’s has been around since the beginning of the epidemic of HIV in Alaska. We opened in 1985. And, like most HIV organizations were founded by volunteers at that time. So people who, you know, had people in their life that were HIV positive, people who were HIV positive. At that time, there was obviously no effective treatment. So people were dying and there was a lot of grief in the community, and also a lot of need for support for both people who are positive and people who are caring for people who are positive.
Yvonne Krumrey: What do you encounter with Four A’s that other HIV awareness and prevention and support organizations across the country might not encounter just because of Alaska’s unique political landscape or physical landscape?
Robin Lutz: We have clients across the state, some of them live in super remote communities. So you know, we have people who come in twice a year to get their HIV medical care with a series of transportation like first they start on a boat, and then they go on a small plane, right, and then they get on a bigger plane, because they live way out in a rural area. There is a lot of hesitation in general, but especially outside of Juneau and Anchorage, there’s a lot of hesitation on the part of folks who are HIV positive to share their status. For good reason. There’s still a lot of misinformation out there, and a lot of stigma in many communities. So, I worked for over a decade in New York City in HIV services. And I think one of the biggest differences I see is that there’s much more isolation up here as far as being able to share being a person living with HIV. We have many, many folks who live here who come to us for services, and we’re the only people who know they’re positive, it’s us and their doctor. And that’s it. And that’s a really difficult thing to hold.
Yvonne Krumrey: How has the HIV epidemic impacted Juneau, historically? And how does it impact us now? And about how many people are you actively working with?
Robin Lutz: That’s a great question. So, you know, Juneau is a small community, I don’t live there. So I come from an outside perspective when I speak about Southeast.
But you know, my understanding is that historically we have a lower number of people living with HIV than a lot of other states in the country. And, you know, Juneau reflects that, as far as the number of folks that we know are living with HIV in the community.
I think one of the most interesting things about Juneau and HIV prevention in the tourist season, right, and all the traffic that comes in. And so we do a lot of work to make sure people have the information they have about HIV prevention. Because the community is always in flux, right. And people are making choices and getting education on what kind of relationships and you know, how they interact with other people who they might not know, or who are new to the community and who might be, you know, not getting care in the community.
I think the other thing about Juneau is, because it’s so small, there can be isolation around being HIV positive. It’s not something that many people feel comfortable sharing about themselves. So, you know, I think Juneau is a great community, because it’s welcoming, especially, I think, has been increasingly more welcome to our LGBTQ community, which is wonderful. And I think, you know, anytime a community is welcoming towards groups of people who are usually stigmatized, that always works in the favor of those of us in the HIV community, right? And so I think we’re getting to a better place in Juneau, but like any small place, it’s still hard to have a health condition that is really, really stigmatized.
As far as the number of people we serve in Juneau, it’s been historically pretty small. So across the Southeast region, I believe we have under 30 people that are actively getting case management services from us. And that’s usually about as drilled down as we like to get just to really protect people’s confidentiality as far as like, you know, how many people are living in each community and things like that?
Yvonne Krumrey: So what do you personally think of the news of a potential vaccine?
Robin Lutz: You know, I’ve been working in HIV for almost 25 years, I’ve lost a lot of people that I care a lot about. Anytime we come to a new kind of hurdle in the epidemic, there’s always this sense of new hope, which is great. I think, you know, in the public health community and the scientific community, there’s this kind of expectation right now and understanding that we’re on the cusp of a pretty quick increase in our ability to deal with viruses.
I think the hope is tempered by the same things that we face with other prevention strategies we already have, right? And I think with the vaccine, the thing that is always the concern is access.
So cost and access, once it is available, who’s going to be able to get it? What will the messaging be around it? Are the same communities who are always highly stigmatized and underserved, going to continue to experience that? That’s global, but also in the U.S., you know, the higher rates of infection we’ve always had over the last two decades have been especially around young men of color who are LGBTQ, right? Trans women, especially trans women of color, women, folks in the correctional facilities. And that’s because for many reasons, those are the folks who faced the most barriers to health care, people who belong to groups that are highly stigmatized already. Injections, people who are injecting drugs fall into that category as well.
So whenever a new health opportunity comes through, it’s the concern is always like – are we going to be able to make this available and accessible to the people who need it most, to be able to get education to them, to be able to make sure they have access to the, you know, the vaccine itself in a way that’s, you know, really accessible to them? Like, can they get to the place? Are they getting valid information about what it is? Do they have the ability to cover any costs associated with it?
Yvonne Krumrey: One thing I thought was really interesting about this is that the science started with trying to find a vaccine for HIV and then pivoted because of a lack of success and effectively was kind of like abandoned for that reason. And then it became very convenient when mRNA vaccine technology was more within reach when this pandemic started, that impacted all kinds of groups of people. And I’m wondering what that early pivot towards coronavirus research and away from HIV vaccine research says about priorities and health?
Robin Lutz: That has been a conversation in the HIV community since the COVID pandemic started. And the conversation has been around like — yes, historically, for sure, the LGBTQ folks are, you know, the people that have been most affected by HIV since the beginning right? People of color are systematically underserved by our health research, public health, everything, right, that the data is super clear about that. And so that is like a known fact. And we can see that in every part of the way healthcare is delivered in our country, and we can see it in the way that COVID affected different communities, right? And in the higher cost to communities of color communities, you know, people who have less access to health care and are more likely to be doing the jobs that they can’t do from home. And so that was a big part of the conversation.
The other part of the conversation was that, yes, there is a pivot away from researching the HIV vaccines for mRNA. But the pivot really was from the scientific community’s point of view, due to just the lack of success because the virus was so complex, and they weren’t having the success they expected. It’s so different from flu, or SARS, any SARS virus, one of the things I found super interesting is that – so HIV mutates really easily and really quickly. And that’s something that we’ve effectively dealt with through antiretroviral medications. They are effective against HIV, one of the things that they’re most effective at is driving down the level of HIV in the body, so then there’s less virus to mutate, right.
But for someone who is not on meds and has HIV, that virus is mutating. It could have as many variations in that person as all the variations for flu globally. It’s a super tricky virus. And so there is this kind of dual conversation going on going around, around. This is the reason why the pivot was made. It doesn’t negate the history of vaccine research and the way resources are allocated to disease prevention.
Yvonne Krumrey: So looking towards the future, as we may have inoculation against HIV, what do you worry will be lost in our collective remembering of the HIV epidemic?
Robin Lutz: I feel like so much has been lost already. Anyone who is under 40, at this point, has grown up with HIV as something that exists, right. And we are starting to lose a lot of our long-time survivors of HIV.
So we’re both losing, kind of the living history of people who are around in the early epidemic, and we’re losing the collective memory of what the early HIV epidemic felt and looked like in the US. The majority of people who I talked to about HIV don’t have an understanding of the devastation the virus caused in the 80s and 90s.
HIV has really retreated from being a focus of public concern, which is hard to see, it’s hard to see a lot of folks who, you know, go through high school without HIV education. It’s not uncommon.
So, you know, I think with the vaccine, it would be a wonderful thing. I think, we’re, we’re just moving towards a time when there’s more people who think HIV is just a chronic condition. I think that that thought would increase as the vaccine became available. It’d be a huge public health stride, I think the worry is always that if we’re not still working on issues of stigma, and issues of access, for people who are living with HIV, then the isolation and the stigma doesn’t change. And if it’s not something that is normalized outside of just getting vaccinated, it’s not going to have the same effect for folks who have been living through the epidemic.