On June 29, 2014, Gov. Andrew Cuomo, the New York State governor, detailed a three-point plan to move New York State closer to ending its AIDS epidemic. This month, New York City made national headlines for seeing major reductions in HIV diagnoses, putting the state on track to reach its broad target to end HIV as an epidemic by 2020.
Each year in early December, the New York State Department of Health hosts an Ending the Epidemic Summit in Albany, New York, where hundreds of people around the state come to share best practices and get motivated to continue working on the plan. And on the second day of the summit this year in 2019, the audience had the pleasure of listening to two leaders in the ending-the-epidemic fight. They were Johanne Morne, M.S., who is the director of the New York State Department of Health AIDS Institute, and Oni Blackstock, M.D., who is the assistant commissioner in the Bureau of HIV/AIDS Prevention and Control with the New York City Department of Health.
They showcased 2018 surveillance data, progress toward ending the epidemic metrics, and discussed innovative programming that illustrated how New York State is maintaining the momentum and expanding the vision.
Terri Wilder: I just want to start off by talking about some commonalities that you both spoke to. I know that both of you work very collaboratively together. The majority of our epidemic in New York State is in the city, so it’s very important for there to be a collegial, collaborative relationship.
I want to get to the beginning of this by talking about some of the things that relate to inequity, and some of the disparities that, unfortunately, we’re still seeing. I’m wondering if you can talk about this, both from the city side and from the state side.
Oni Blackstock: Sure. Overall, we’re seeing declines in new HIV diagnoses among almost all groups. But then when we look at the magnitude of the declines, we see that there are differences, including by race and ethnicity. And so, for instance, when we look at new diagnoses attributable to male-to-male sexual contact, you see that black MSM [men who have sex with men] had declines of about 9% in the past year, versus 34% for white MSM.
Is the 34% decline that we saw among white MSM—is that PrEP [pre-exposure prophylaxis]? And it probably is a lot about PrEP; when we see who is utilizing PrEP, we see much higher rates of PrEP use among white MSM than black MSM. And then there are also many other social and contextual factors that may make it challenging for black MSM or Latino MSM to also benefit, similarly, from PrEP.
Some of our work that we are involved in is—for instance, in Brooklyn we have a community advisory board that we’ve worked with of black MSM, who have given us recommendations for what is needed to improve outreach and engage men as black MSM in HIV prevention and treatment services. And so, we kind of know what we need to be doing. We’ve heard from community members about what we need to do. And I think what we need to start doing is actually begin working to implement some of this, or many of these, recommendations.
TW: Can you share what some of the recommendations are that have come from the community?
OB: I think having, for instance, staff that reflects the population being served is a good start. You know, often there may be one or two folks who have—I think there’s a feeling of folks being maybe tokenized. But I think, you know, really investing in developing a workforce of folks who are from impacted communities is really important so that people can walk into a CBO [community-based organization] or a clinic and really feel like they belong there. Because what we actually see with our PlaySure Network is that, even though we are not necessarily enrolling large proportions of black and Latino MSM, once they are in the door, they uptake PrEP at much higher—at very high—rates.
And so, I think a lot of it is: How are we engaging folks? How are we doing outreach? And so, I think looking at some of those strategies, and strategies that have been successful, may help improve the numbers that we’re seeing.
TW: And when we’re talking about black and Latino MSM, we’re talking about cisgender black and Latino?
TW: In the group that you’re talking about that gave the recommendations, that is made up of cisgender—?
OB: Black and Latino MSM.
TW: Johanne, from the state perspective, I’m posing the same question. You were still seeing disparities, in terms of who’s being diagnosed with [HIV], and race. So, if you could talk about it from the state perspective, and maybe piggyback on what Dr. Blackstock said, and what are some of the initiatives that the state is engaged in.
Johanne Morne: Sure. I think many of the things that Dr. Blackstock said is consistent with what we see as far as our metrics and data across New York State. I think, certainly, the conversation of health disparities and health equity is one that’s central to the conversation of ending the epidemic.
So, I think that priority has to be given to continuing to develop opportunities for, yes, workforce development around making sure that the individuals who are providing the service are (1) reflective of the environment; (2) familiar and knowledgeable, and with lived experience of the communities that are not seeing the same equity as it relates to HIV diagnosis reduction; and (3) creating environments that are welcoming, that people want to be a part of—which also speaks to making sure we’re looking at those ways in which we can reduce stigma within the systemic walls of what we create and provide in care.
So, how have we done that? Community input is what’s key to developing any type of intervention or next step. And so, we, too, through a number of different ways, have promoted the voice of individuals with lived experience who can assist in developing not only recommendations, but implementation strategies, both for the state and for the city, as well as for providers across the entire jurisdiction.
The other thing I think is that we have to really look to our champions within community, and really take in from those individuals exactly what is it that they see as creating the gaps and the barriers, and what is it that we can do, if you will, to somehow get out of the way so that we can continue to move forward to achieve equity?
TW: During the Q-and-A discussion piece of your plenary, a woman came up to the mic, and I thought she made a really important point, particularly as it relates to equity and looking at the racial disparities. She said when somebody is saying we’re seeing increases in the, quote, black community, she said, “I appear black; I identify as, I’m West Indies.”
And so, where we are talking about the, quote, black community, what does that really mean and how do you engage folks? Because folks may be a person who is a person of color who’s Muslim, or like she identified, “I’m West Indies.” And there’s different ways that a person navigates through life based on their culture.
OB: No, I agree. I think, you know, from the public health department perspective, I sort of think, for instance, social marketing campaigns and when we’re trying to tailor them to certain audiences. I think we sort of have to cast a wide net because we’re trying to reach lots of different people.
But I also think about our community-based organizations and the partners that are really embedded in many of these communities; how we have been successful with funding the organizations to, then, do more tailored outreach to specific communities. For instance, if there’s an organization that works with folks who are emigrating from Jamaica, they may be—and they are—better positioned to figure out what is the tailored messaging that would really resonate with folks in our community around HIV prevention or treatment? That’s when I think our partnerships that we have, with our advocates, with CBOs, are really useful.
JM: I totally agree. It’s about cultural responsiveness, right? So, an understanding that perhaps our data points are not collected specifically to different ethnicities. But it’s about understanding how we can develop comprehensive programming and response, and not minimize grassroots, right?
If we think back on what’s been successful around HIV, as far as our response, it was the grassroots community-based organizations that led the way. And so, to your point, I think, Dr. Blackstock, that’s where we have to continue to be innovative in how we respond to different cultures.
I think a really great example of how we’ve done that in the community is when we talk to our faith leaders and utilize and partner with our faith communities, as a really strong point, from a cultural perspective, if you will, to engage and educate people. That’s a longstanding intervention that we’ve seen continue to grow over the years. It’s one example. But I think that, at the end of the day, in order for us to be able to do this work across all ethnicities and all different cultures, what we have to look to is being willing to, again, sort of get out of the way and allow the community to lead us.
TW: Great. So, let’s talk about another community that both of you talked about in your presentations this morning, which is the transgender community. I’m wondering if you can talk about specifically what we’re seeing in the past year in terms of diagnosis and care; but also, any initiatives that your respective departments have created in response to the needs of the community.
JM: One of the advisory groups that we were fortunate enough to work with focused on transgender and nonbinary individuals. And, again, the intention behind the advisory groups is to develop implementation strategies in support of the blueprint recommendations.
So, what that group was able to put forward really has sort of been put into action. We recently, through state funding, were able to allocate resources to specific transgender health care services, both in New York City as well as some areas outside of New York City and the rest of the state. That opportunity has really led us, not only to be able to provide a service in care, but to gain understanding and experience, and making sure that services from the point of entry to the point of exit are responsive, are respectful, and are able to engage individuals with trans experience.
In addition to that, I think that we’ve really worked closely with our city surveillance partners, as well, in making sure that we have the surveillance data. And so, while this is a conversation of people and not numbers, it is relevant to make sure that our data is representative of all the people that we serve. And so, the work that has been done over the last few years, again, based on community input, has really proven to be—has really proven to be effective in, number one, changing our data collection, so that our data collection is representative of, as we refer to, SOGI—sexual orientation and gender identity; and, number two, that we provided education and technical assistance to providers, not only for the purpose of the data collection, but to understand why it’s relevant and important to collect the information so you can be able to respond to the individual or patient before you.
I also think that when you look at some of the information that we shared this morning, unlike any other populations or groups of individuals, we don’t see a consistent reduction or a downward trend. What we see is sort of this up and down trend, which tells us that we need to find continued ways in which we can promote HIV prevention, as well as overall sexual health discussions, within the transgender community.
TW: When you say there’s up and down, is that both with transgender women and transgender men? Or are you seeing mainly with transgender women?
JM: What we see with transgender women—we have seen a reduction. So, if we did the comparison of 2016 over 2018, we have seen a reduction among individuals who identify as trans women.
With trans men, we have seen more of an increase. When I say that, I think it’s relevant to understand, though the numbers may appear small, if someone were to look at some of our data points, we have to understand those numbers are relative within a particular community of individuals.
So, when you look at the number of individuals who identify as transgender within New York State, transgender or gender nonbinary, then every single point that you see on the data slide is relevant; and the fact that we’re not seeing a consistent downward trend tells us that we have continued work to do. Because what I’m concerned with is that we’ll keep that trend heading in the wrong direction.
TW: Why do you think there’s been kind of an uptick in new diagnoses in trans men, from a New York State data-collection perspective?
JM: This is a conversation that we’re having. I think that, generally speaking, some of what happens in public health is that the focus tends to be on where we see a really significant increase. So, what’s happening, I think, as it relates to trans men, is that we need to do more accelerated work as it relates to education, as it relates to services; and that the same type of effort and resources that we have dedicated to looking at the impact to women of trans experience, we need to collectively look at that for the entire transgender community—including trans men.
One of the foundations of ending the epidemic is that we don’t leave a population behind. So, whether the numbers are large or small, if we’re finding that we didn’t achieve some type of reduction, then we still have an area to focus on.
OB: So, we are seeing, in New York City, sort of a stable number of women of trans experience being diagnosed every year. We did have a slight increase of about 5% from 2017 to 2018. Every year, about zero to three trans men are diagnosed with HIV in New York City. I think the challenge, though, is that we’re not seeing a decline in these numbers.
And so, I think one of our efforts is really around empowering and building up the foundations of trans-led organizations. Because we think that these grassroots organizations are well positioned to engage with community members and doing it in a way that’s culturally responsive and appropriate.
I mentioned that we have these organizational capacity-building grants, specifically for transgender and gender-nonconforming—led organizations. And the experience that we’ve had over the last few years—we’ve seen some of the organizations really flourish; others have just continued to struggle and, that being said, they kind of all started from different places.
But it has made us think that for those that are really flourishing, what is the next step after that? Right? So, they may not necessarily be in a position to compete for some more competitive funding in a different category; but is there sort of a transitional funding category that we can think of that could involve providing services to people of trans experience? That’s the direction that we’re hoping to go in, in the next few years.
And then, obviously, our PlaySure Network—people of trans experience are a focus of many of the sites that are providing care. And so, we continue to make that a priority for us.
But, yeah. I think this continues to be a challenge. I think people of trans experience, particularly trans women, face a number of structural barriers around employment and housing. But with our organizational capacity building, one of the organizations that we fund is focused on providing housing to people of trans experience, so that if we can build a foundation of these organizations so they are really able to provide these important services, then we feel like we could eventually make an impact on housing, and eventually on HIV incidence.
TW: I also want to talk about something that was brought up. Dr. Blackstock, you kind of framed it in your presentation about storytelling and the importance of storytelling. As a Southerner, I know that storytelling is very important in sharing information and historical, you know, family things. But I’m wondering if we can talk about storytelling as an underutilized tool in public health.
OB: Sure. You know, I think this actually came up when we were thinking about PrEP for women, because it was so rare that we heard women talking about their own experiences with PrEP. And we were like, oh, it would be great to hear personal testimonials about why women have chosen PrEP for themselves.
We found out that in the Baltimore Department of Health, they were actually using storytelling to address HIV-related stigma and other identity-related stigmas. And so, our team from New York City Department of Health went down to see some of the work they were doing.
We saw what they were doing in Baltimore and decided to adopt that approach here in New York City.
So, we are working with a consultant, someone from the community; he is from a community that’s been impacted by HIV who is really helping to steward and shepherd this process of storytelling. And, you know, it’s not just about HIV. We know it’s around sexuality, around homophobia, transphobia; but really an opportunity for people to really share their personal narratives. And we find that that really helps resonate with other people and help to destigmatize a number of these issues.
JM: So, for us, one of our longstanding examples is the HIV Stops With Me campaign, which started some years ago and has certainly profiled a number of different individuals. But what’s really great about this campaign is that it’s not only about the images that you see on the billboards; it’s about an ongoing, live conversation that can continue on a web page. And so, each of the spokespersons, or spokesmodels, shares their experience and their story. And then they have themes every single month that they focus on and speak to. And also, there’s an open chat site, if you will, that people can ask questions and get answers to.
It’s one of the things that we do for the state, as it relates to World AIDS Day, every single year. We bring middle- and high-school—aged students here to talk with individuals who have lived experience with HIV—both individuals who are diagnosed as positive, and individuals who are HIV negative.
When the students leave, they do an evaluation. And there’s two main things that they talk about as being most impactful to them. It’s hearing the lived stories of the young people that sit on the stage. And it’s also the viewing of the quilts—recognizing that their experience and understanding of HIV comes from a very different lens. So, understanding the stories that the quilts tell of the individual people that have been lost is really important. So, again, that visual and that use of all our senses is really impactful.
TW: I wanted just to end by talking about a couple of pieces that are a hodgepodge of things that were mentioned. While we’re meeting some of our goals around ending the epidemic, I’m just wondering about some of the things that Johanne, in particular, that you had brought up at the end of your presentation—that we are, unfortunately, seeing an upward trend in other sexually transmitted infections. And actually, some of the things that you talked about were pretty alarming. I think that you said that, was it syphilis that’s a 200% increase? Which is really kind of shocking.
And so, I’m just wondering if we could end by talking about the other STIs, which—you know, some people would be, like, “That wasn’t a part of the three-point plan.” But if you go and look at our blueprint for New York State, you’ll see that it’s very comprehensive, and not just talks about HIV; but talks about hep C, other STIs, and other things that kind of correlate and are intersectioned with HIV.
JM: So, first of all, what I want to say about STIs is that it’s a really significant part of our conversation. And when we talk about sexual health, certainly this comes into play. Let me just clarify, as it relates to the 200% increase—that was specific to congenital syphilis. That’s a transmission from mother to child.
As it relates to primary and secondary syphilis diagnoses, we see about a 57% increase. So, both of those are really significant.
But I think it also speaks to, if you will, a little bit of history. And it also underscores for us, as we’re heading towards the end of 2020, that gains can only be maintained and sustained if we sustain the resources behind them. Because there was a point in time in which New York State had eliminated syphilis.
So, here we are. I think that part of it is we have to be really considerate around how we provide our prevention messages. I think that sometimes in our messaging of really huge advancements, as it relates to the prevention of HIV, we don’t necessarily have that full, whole conversation about all STIs. And the reality is—which is why I felt compelled to talk about the New York State Condom Program this morning—is that we have to make sure that people understand that STIs are prevalent and absolutely require really thoughtful, considerate prevention, right? And so, condoms are the way in which we can do that.
I also think our messaging in education, as it relates to the treatments for STIs, is significant. Because while, yes, we can treat STIs; it’s also relevant to understand that if you’re not symptomatic and you’re not being screened for STIs, you may not be aware that you have an STI.
And so, you know, this speaks to provider education, routine screening, access to prevention, and just a general moving away from the stigma and lack of willingness to talk about sexual health.
All I can say is that there’s a considerable amount of work to be done. And this particularly impacts our younger people, particularly between the ages of 15 to 24, when we talk about STIs. So, you know, comprehensive, evidence-based sexual health education is key.
OB: Yeah. And to add to that, there’s a sexual history taking, a training that I know the department of health offered, but that’s also on the AIDS Institute guidelines website, I believe. It’s basically for health care providers to basically learn how to take a culturally responsive and appropriate, nonjudgmental sexual history.
Because I think if someone’s coming in and they’re having various concerns about STIs, or maybe they’re having symptoms of an STI, but if they don’t feel comfortable disclosing that to the health care provider, that’s a missed opportunity. And also, if we’re not talking to our patients about just sexual health, in general, and acknowledging that STIs are just one part of that, then we’re failing.
So, a lot of it also, as Ms. Morne mentioned, is about building provider capacity and provider education to adjust these issues.
TW: Thank you both for bringing up sexual health. Because it makes me realize that we have to close by talking about one of my favorite topics, which is PrEP and PEP [post-exposure prophylaxis]. And so, I know that there’s some really great things that are happening. We’ve seen an uptick, in particular, with people accessing PrEP—but only certain communities that we’re seeing accessing PrEP.
And I don’t want to forget PrEP’s older sister, PEP. And I know, Dr. Blackstock, you have some things happening around women, accessing PrEP and PEP. So, anyway, I just want to throw that out there to be able to say anything that you want to about PrEP and PEP in New York State and City to close this out.
JM: What I am proud to say is that in New York State we have really worked to try to remove any barriers that individuals may have, as it relates to access, including ensuring that there’s a statewide PrEP Assistance Program to provide funding for individuals who may not be able to afford or pay for the wraparound services that are included as part of the PrEP intake process.
The PrEP-AP does not pay for medication, per se. But what we do offer is assistance with the patient assistance program that the manufacturer offers.
In addition to that, most recently, there was communication from our Department of Financial Services that indicated that effective Jan. 1 of 2020 that there would be no additional cost, including no copay, as it related to accessing PrEP.
TW: Is that for insurers?
JM: Yes, for insurers.
TW: So, if you have private insurance, you’re not going to have a copay for your PrEP?
JM: Exactly. So, you know, I think what’s key is that we have to look at how we remove the barriers. I think the work that we have to do, though, really speaks to how we continue to leverage and find expanded opportunity within direct communities—so, community-based organizations—so that we can [get] a message out to individuals.
I think there are a lot of questions around the safety of PrEP, especially given some of the recent media. But what we’ve found is that PrEP has proven to be effective, as it relates to negating the transmission of HIV.
Now, to the older sister, as you referred to it, for PEP, post-exposure prophylaxis: again, another great opportunity in which individuals who believe they may have been exposed to the virus can certainly use PEP as an option to prevent seroconversion.
And in New York State we actually have the opportunity through pharmacies to be able to provide a starter pack of PEP of about a five-day starter pack, so that individuals who perhaps don’t want to go to an emergency room would utilize a pharmacy as an initial access point.
The last point that I want to make relates to minors, in that we have worked so that minors across New York State, as it relates to STIs and, of course, including HIV, have the opportunity to consent on their own to treatment, as well as prevention. And that includes both PrEP and PEP.
OB: Yeah, so in New York City, obviously, we’re benefitting from all the wonderful city programs, the PrEP assistance program, that exists, and the various policy changes. So that’s really been positive.
As far as PEP, post-exposure prophylaxis, we support the PEP call center. So, after hours, if someone needs PEP, they can call into the PEP call center and have it prescribed by a provider for several days, until they can come into a brick-and-mortar location. And then we also support several brick-and-mortar clinical centers of excellence for PEP. And those are around the city. Folks can go in there to get PEP.
Then, obviously, our sexual health clinics provide low-to-no-cost PEP, PrEP, as well as immediate treatment. So, that’s all part of it.
And then also, we’re part of the PlaySure Network, which I mentioned before; it helps to navigate folks to PrEP from non-clinical-based organizations to clinical sites, and also address other social determinants. So, yes. We have a huge collaborative effort going on in the city and state to make sure PrEP and PEP are accessible to New Yorkers.
TW: I think that overwhelmingly, people think that, still, PEP and PrEP [are] being accessed by men, particularly cisgender men. And you have a new initiative to do some detailing. Can you talk about that?
OB: Right. We conducted, I believe, two waves of public health detailing to women’s health care providers, basically to talk to them to provide brief education around PrEP so that they can then deliver key messages to their women patients about the benefits of PrEP.
TW: And that’s cisgender and transgender women?
OB: Yes. It involves both cisgender and transgender women. And we also targeted family planning providers, midwives, OB/GYNs. And so, we were happy to see just some preliminary data that looks like a lot of the providers were already prescribing PrEP, which was the positive. But we still need to get the word out, because providers can be a barrier to PrEP. It’s one of the few HIV prevention strategies that requires a prescription, and so we want providers to know that if a patient comes in, if someone comes in, and they even ask about PrEP, that is a potential indication for PrEP.
JM: And if I could just add one thing: Given the conversation’s focus on clinicians, another resource that clinicians have is our CEI, in other words, Clinical Education Initiative. What this can do is offer resources, as well as direct person-to-person support, particularly as it relates to PEP—the post-exposure prophylaxis—including a hotline. So, just really encourage individuals to utilize those resources that are available to them.
Because, at the end of the day, what we want to do is just ensure that people are able to make informed choices and that people have access to what those choices are.