Transgender Inclusion in National HIV Strategic Plans
In this podcast, Jennifer Sherwood, PhD, and Elise Lankiewicz, MPH, speak about the current state of transgender inclusion in national HIV strategic plans (NSPs) globally, the results from the recent systematic review documenting the quality of trans inclusion in the NSPs of 60 countries, and how national HIV planning processes can increase trans inclusion. They also spoke about these topics at the International AIDS Conference 2022 during a presentation titled “Systematic Review of Trans Inclusion in National HIV Strategic Plans."
- Sherwood J, Lankiewicz E. Systematic review of trans inclusion in national HIV strategic plans. Talk presented at: the International AIDS Conference 2022; July 29-August 2, 2022; Montreal, Canada. Accessed September 8, 2022. https://programme.aids2022.org/Programme/Session/479
For more coverage of the International AIDS Conference 2022, visit the newsroom.
Jennifer Sherwood, PhD, is a policy manager at amfAR, The Foundation for AIDS Research (Washington DC).
Elise Lankiewicz, MPH, is a project coordinator at amfAR, The Foundation for AIDS Research (Washington DC).
Jessica Bard: Hello everyone and welcome to another installment of Podcast 360, your go-to resource for medical news and clinical updates. I'm your moderator, Jessica Bard with Consultant360, a multidisciplinary medical information network. A Pew Research Center survey finds that 1.6% of US adults are transgender or non-binary. Dr Jennifer Sherwood and Elise Lankiewicz are here to speak with us today about their presentation at the International AIDS Conference 2022 titled Systematic Review of Trans Inclusion in National HIV Strategic Plans. Dr Sherwood is the policy manager and Elise Lankiewicz is a project coordinator at amfAR, the foundation for AIDS research in Washington, DC. Thank you for joining us. Can you please provide us with an overview of your presentation?
Dr Sherwood: Sure. Great, thanks Jessica. We, I think in brief, this presentation was to highlight some of the results of a recent systematic review that amfAR undertook with our partners GATE, Global Action for Trans Equality, who are based out of the Netherlands. We undertook this endeavor, well, for a few reasons. I think the context in which the project came out is that it's well known that in every country that we have data, we're really seeing high rates of HIV prevalence along with other social barriers to HIV treatment and prevention among trans populations. The data is not complete and is often pretty sparse, but everywhere we do have data, we're really seeing exceptionally high risk and you would think that that would really prompt a lot of resources and national attention to trans populations just given the really high risk. But we're often met with low levels actually of political will and a lot of political barriers to addressing the HIV epidemic in trans populations.
And so we're faced with this really complex situation where we have exceptionally high risk of HIV and low levels of political will. And so, it becomes sort of a complex situation where trans populations are not always included in national strategies for HIV and national documents. And so what amfAR and GATE did was to look at national strategic plans for HIV and AIDS in 60 different countries, high prevalence countries, high HIV prevalence countries around the world. And what these documents are, are sort of, it's the government's plan about how they're going to address HIV in their context for the next five to 10 years or however long they set their plan for. And they will outline their key strategies, their key populations that they want to address HIV in. And so they're really important indications to the world and to the nation how they plan to address HIV. And so if trans people are not included in those plans, you can see why that would be an issue, is definitely an indication that there's some gaps there and some opportunities to really improve that plan to align national plans with epidemiology.
We reviewed 60 different plans to take a look at what sort of the state of current trans inclusion in these policies were globally. And I'll leave it I think to Elise to talk a lot about some of the sort of the specific results and things that we found across regions, if helpful. But I think overall to say that for me there were a few unsurprising and maybe a few surprising results that came out of the work. And on the unsurprising side, I would say that we really are seeing a lot of opportunity to improve trans inclusion. There continued to be really big gaps in countries inclusion of trans populations. And one of the cool things about this review is that it wasn't just a check box where we said are trans people included, yes or no. We really dug into all of these key parts of the plan to look at whether trans people were included, not only in background research, but also in indicators, in targets and in budgets.
And so we really tried to make a good effort to see whether there was meaningful inclusion of the trans populations throughout the documents. So when giving this lens, I think some of the surprising things that for me was that there actually were some countries with some really good language for trans populations and there were some great examples of where trans people were not just mentioned in the background sections, but were really included in some of the other sections that were attached to money or to target. So that was great to see. And for me, the project helped define what good trans inclusion could look like despite the gaps, despite all this opportunity to improve, I think knowing that there are countries that have some good language sort of gave me a vision of what governments could do to really improve whether or not all of that language transfers into action is certainly another question and is important. But just in terms of the policy documents, I think there were some really good examples, so I'm sure Elise can give more descriptions of the results, but those were sort of some initial ideas.
Dr Lankiewicz: Yeah. So I can jump into some more detailed results if that's helpful. So essentially what we found, like Jenny said, is that there is starting to be some trans inclusion in these HIV strategic planning documents, but there's some really enormous gaps remaining. So a little more detail about what we actually did for this review is we essentially went through the actual documents from each of the 60 countries and we looked for inclusion of trans people in five different sections. And so the sections that we looked at were the narrative, which is where NSPs generally provide details about the context of the HIV epidemic in their country. We looked at the epidemiological data, so estimates of how prevalent HIV is within different groups. So we were looking for trans people in that data as well as size estimates. So the size estimates of the different populations that are most impacted by HIV.
And both of those points are really, really critical for program planning. So when they're absent, it's a big deal. We also looked at activities, so what HIV and related health service activities the country is planning to implement moving forward. We looked at monitoring and evaluation, so how the country was going to measure the implementation and success of those activities where it related to trans people and trans communities. And then we looked at the budget. So this is really important to look for trans inclusion there as well because that's sort of window for accountability in terms of actually getting these activities implemented.
And so when we looked at each of these sections, we tried to see both whether inclusion was occurring and where it did occur, what the quality of inclusion was like. And in terms of really high level results, what we found is that about two thirds of the NSPs we went through actually did mention trans people somewhere in the strategic planning document. So about a third of these HIV planning documents had no mention of trans people. Only 8% of the NSPs we reviewed included trans people in each of those five key sections that I just mentioned. And then when we went through and looked specifically at sections, found that the most inclusion was happening in the narrative, so we saw that in about 62% of NSPs that we reviewed. We also found that about 40% of the NPS we looked at included trans people in their planned activities. And then around 20% included trans people in the epidemiological data and indicators or targets, but only about 13% of NPS included trans people in budgets.
So I think one really important point there is that while, inclusion is occurring, it's often occurring in sections like the narrative which have no real implications for actually getting health services to trans people. And inclusion isn't really occurring in sections like monitoring an evaluation or budgets. And those things actually translate more to programming or opportunities to hold stakeholders accountable when that programming isn't actually being delivered. Very last thing that I'll add is we did see a lot of variation geographically. The more trans inclusion was happening regionally, Asia and the Pacific, whereas the least trans inclusion is happening right now in Eastern and Southern Africa.
Jessica Bard: Now I was listening and taking some notes here. Is there anything else that you'd like to include about what the current state of trans inclusion in the national HIV strategic plans globally, like what that looks like? Or I think you covered a lot there, which was awesome. Is there anything else that you want to add to that?
Dr Lankiewicz: Yeah, I mean, I guess the only other thing that I would add is we are trending in the right direction. So we did this review about a year and a half ago now. Since then, a couple new NPS have come out. And so this is sort of an opportunity right now. Key populations is such an elevated issue within the global HIV pandemic. So I think right now there is a lot of opportunity to make these pushes and make progress in inclusion. I think we are starting to see that a little bit. I'm sure Jenny may have other things to add.
Dr Sherwood: Oh. No, I think that's great. I mean, that's exactly right. I think the major ideas for me is that we are trending in the right direction, but sometimes the speed at which these plans are written, they can be once every five years and planning processes can take place. They can start taking place years before those documents are actually out. And so I guess I would say that it's important that we use these results now to start working on the plans looking forward that we really can't wait until right before the next plan's supposed to be written to put these results into action, that it's really now that we should be using these results to help improve policy documents moving forward.
Jessica Bard: And I know you mentioned some high level results. Do you want to get a little bit deeper into some of the results that your review showed, or do you think that you covered them for the most part?
Dr Lankiewicz: One other sort of result that came out of this review is maybe a better understanding of what good trans inclusion looks like. So I think one of the things we found is that we really need to see discussion of, I guess the unique priorities of the trans community within that country. Talked about separately from general references to key populations. A lot of times we see discussion of key populations as a whole, but there's really sort of unique health service needs and sociocultural contexts that require different consideration and different program planning. And I think it's especially important for the trans community in particular that we move past grouping men who have sex with men and transgender people together in discussions. Historically, that's been something that's been done in the public health community. It's been done a lot in epidemiological data and it really ignores the unique vulnerabilities of both of these key populations and is definitely an area where we need to improve when we're thinking about data and program planning.
And I think the other thing that is quality trans inclusion is when we go beyond talking about the provision of services to trans communities and talk about engaging trans communities in the planning and delivery of those services. Because we have the data that tells us that services delivered by or in collaboration with peer organizations and peer community members do a way better job of serving hard to reach populations. And that's something that can be incorporated into the activities and budget sections of these NSPs.
Dr Sherwood: Yeah, totally agree. And the only other thing I would add to that is that we hear time and time again from our collaborators and community partners that often when they come into these advocacy meetings or policy discussions, the government or others ask them for the trans data. They're like, show us the prevalence, show us the size estimation data for trans communities, like how many, what do we need sometimes? And if they can't produce that they can be ignored. I'm in those conversations. And so one call that we've had over and over again is that there has to be investment in trans specific epidemiological data, both HIV prevalence and size estimation data in order to arm communities to have these policy conversations in country. And as Elise is saying, that it's important that that data is generated not just about the trans community, but is actually trans led in its generation.
Jessica Bard: Yeah. You mentioned some good points there, both of you. And I know that you mentioned including the trans population in the evaluation and budget and not just in the narrative. Any other ways that the trans population can really be included in this data?
Dr Lankiewicz: Yeah, I mean I think one thing that's sort of bigger picture, higher level is you're going to get higher quality inclusion in NSPs when you're including trans people in the actual development of these documents. Right. So these documents are developed by governments, but in consultation with so many other players. And a lot of times we don't always have key populations voices or trans voices in the room as part of developing these documents. And you're going to get higher quality documents when the people you're talking about are contributing to the conversation. So that's just one big thing.
Dr Sherwood: Agree. Yeah. And I think in terms of other sections of the documents, the monitoring evaluation sections are really important. And one of the major reasons that it's important is that it gives an opportunity for follow up with that government. So for example, if the government sets out their targets for how they want to address HIV and they don't include any targets for trans people or they lump trans people together in an overarching target for just key populations in general, or for prevention in general, there's less opportunity for trans advocates and others to hold that government to account because they don't know if they've met that target. They don't know if it's a group target and they meet it overall. They don't know if you've actually met that target for trans people or if they've been sort of erased in a larger non desegregated target. So I would say another point would be target making is important not only for epidemiology, but for advocacy.
Jessica Bard: Including the population in the room seems so obvious, but obviously isn't something that's always put into practice. What are the overall take home messages from your presentation?
Dr Lankiewicz: I guess I have two. I can start. I would say you have to move past superficial inclusion of trans people in NSPs. It's not enough to throw a sentence in the NSP narrative along the lines of there's trans people in our country and they're impacted by HIV. We need to increase inclusion in ways that actually lead to health services programming for trans people and open doors for accountability. And then I guess my second main point would be that without better data on trans populations, we're not going to get anywhere.
I think Jenny spoke to this earlier, but it's really, really hard to make a case for more money or more programming for trans communities and health services if we don't have localized high quality evidence of a certain level of need. So I think there's a responsibility from particularly the international players who often fund these kinds of size estimate or epi studies to require high quality disaggregated data on trans communities and require that trans communities are involved in the planning and implementation of those studies. Because you're not going to get good high quality data on a marginalized population if they're not in the room and providing their input into those studies.
Dr Sherwood: Exactly. Yeah, I think that's what I would say too. But I think in addition, something that came out of this review is that this doesn't have to be a really costly and difficult thing and process for governments. This can just look like proactively seeking out trans experts in your country and working together to design a document that addresses trans-specific needs and calling out gaps when they exist. I don't think that we expect that every country is going to have all of the data and all of the answers and for trans populations that would be not realistic, but calling out where gaps exist as opposed to just no mention of trans people overall is such a difference. Pointing out where there's a gap means that you intend to have that gap filled at some point versus just not identifying the gap at all looks a lot like erasure.
So for me, it seems that we know how to do it, and there are countries that have done it. There are advocates who know how to do it. There are advocates in every country working on trans issues. And so from the government perspective, from the international perspective, this can be done. It's a matter of will and taking the time to really include trans communities when developing these documents, but it doesn't have to cost you anything really. So I think that's sort of another big takeaway.
Jessica Bard: Yeah. I think this was a really comprehensive conversation and I appreciate you both being here. Is there anything else that you would like to add?
Dr Lankiewicz: I don't think there's anything else for me. Thank you for having me.
Dr Sherwood: Yeah, I think that that covers it. I think just one more point that Elise made that I think is really important and we didn't touch too much on is the role of international organizations in all of this. I think we spoke a lot about government and what governments can and should do to improve these documents for trans people, but there also is a role for international groups, funders who can really demand inclusion in their own organizations and their own funding structures, as well as engage with governments around these issues to really keep populations and trans communities on the HIV priority list.
Jessica Bard: Well, Jennifer and Elise, thank you so much for your time. I appreciate it.
Dr Lankiewicz: Thank you.
Dr Sherwood: Thank you.