Out in Public hosts a panel on Pre-Exposure Prophylaxis (PrEP) and HIV prevention in the LGBTQ community with Douglas Brooks, Noel Gordon, and K. Rivet Amico moderated by Paula Lantz.
>> Okay, hi, everyone. Thank you so much for coming. My name is Mary Alice Truitt and I am the President of Out in Public, which is the LGBTQ student organization at the Gerald R. Ford School of Public Policy. And we brought this event together once we found out about the recent White House policy change around HIV prevention. And so to get this started I would like to extend our deepest gratitude and thank you for everyone that came together on such short notice. We came up with the idea for this event at the end of September and we were able to line all of the logistics up to be able to bring everyone together for this. So, first, I would like to thank Mr. Douglas Brooks for coming, Mr. Noel Gordon, Dr. K. Rivet Amico. I would also like to thank the Spectrum Center and Lynsis' [Assumed Spelling] help with getting resources together. I'd like to thank Leon from the HIV Aids Resource Center, HARC, that came and provided some resources out as well in the Great Hall. I would also like to thank Ford School's generous support from the FSPP Office of Communications and Tom, who is our awesome IT guy who helped us set all of this up. So, and so I would also like to thank those that are watching with us, streamed from the web. And so in honor of November as Men's Health Month, better known as Movember [Assumed Spelling], we as students and people with a common concern have come together. Access to HIV prevention, specifically, pre-exposure PrEP prophylaxis, it is now approved by the FDA and available with prescription. The White House HIV policy updated to 2020 states that vulnerable populations should have full access to this medication. We sought out experts of the multidimensional implications of this public health and public policy event. As Out in Public we are concerned with the specific elements of this opportunity to reveal a pathway to full access, devoid of prejudice, discrimination and stigma. Noel has joined us from the HRC to share his experience and perspective working in outreach to the LGBT community. Dr. K. Rivet Amico is here to share her perspective within the public health domain of HIV prevention, specifically PrEP. And Mr. Brooks of the Office of National Aids Policy at the White House is here to share the changes in the political environment that occurred during the development of this policy. I hope that you will also share insights into the Office of National Aids Policy's goals of making PrEP fully accessible. So, with that, we'd like to get the event started. We have notecards that are out. There will be members of Out in Public going around to pick them up at six-thirty, and then we'll be going through those and you'll have a chance to ask panelists any questions that you might have. And, with that, I would like to introduce Paula Lantz, our Associate Dean of Research and Engagement here at the Ford School.
[ Applause ]
>> Thank you. Good evening. Glad to see you all here on this chilly November evening, and we know what's coming, don't we down the road? But I'm really delighted to be here tonight. One reason is that all my research focuses on public health prevention policies, so I'm really excited to learn from our expert panel more about this really important prevention issue, but also I just finished a term serving on the Board of Directors of the Whitman-Walker Health, Community Health Center in Washington, D.C. It's one of the favorite things I've ever done in my life. Whitman-Walker Health is a Federally qualified community health center that's dedicated to providing healthcare services and primarily focusing on HIV care and prevention to the LGBTQ community in Washington, D.C. So, again, I'm just delighted to be part of this fantastic effort tonight. What we're going to do is start by actually having our distinguished panelists introduce themselves, tell you a little bit about their background and what their work is within the space of PrEP. So why don't we just go down the line here, and we'll start with Dr. Amico first.
>> So, hello. My name is Rivet Amico, and I am with the School of Public Health. My work predominantly has been dominated for the last decade-and-a-half or so actually on treatment adherence for people living with HIV, and I got a bit dragged into PrEP work when early on in the randomized control trials they realized that adherence wasn't kind of what it needed to be. So that was my first exposure and I've been very lucky to have been involved in this discovery and innovation and learning process since about 2010, I think, actually earlier than that. but anyway so I've been involved with the iPriEx trial, with the VOICE trial, with a couple of other randomized control trials, demonstration projects, and now have had the pleasure of being able to have more of an advocacy hat and do a lot of work to try to raise PrEP awareness and PrEP education, as well, so that people at least know that there's an option available to them.
>> Thank you. Mr. Brooks?
>> I'm Douglas Brooks. I'm glad to be here with you, and I was telling folks that usually I'm in a suit and tie, but since I was coming to a college campus I thought I would just be in my collegiate sweater. So I'm very happy to be here with you. I've been at the White House for since March of 2014, so moving toward two years, and a lot has changed. My predecessor, Grant Colfax, actually did us all a tremendous favor in that in Grant's time there and Grant is a medical doctor, I'm a social worker - in Grant's time he spent a lot of his energy in moving the country, moving the White House, moving advocates to understanding the importance of following the science, that the science was the science and that that was where we needed to, how we needed to design our efforts. And so when we prepared to, as we were preparing to update the strategy, the National HIV Aids strategy, it actually became a whole lot easier for us to include, and I want to be clear that what we advocate is full access to PrEP services, not the pill, the pill is part of a set of services and we advocate for that in the context of effective prevention tools across the spectrum. So, and I'll say a little more about that, but I'm really very happy to be here and looking forward to the conversation.
>> Thank you.
>> Hi, everyone. My name is Noel Gordon. I am - I guess the first and most important thing is I am a graduate of the University of Michigan. Yes, that's right, go Blue. I graduated from LSA in 2013, where I studied political science, moral and political philosophy, and LGBTQ and sexuality studies, so I have walked State Street, I have walked South U, like many of you do every day. So that's sort of the first lens I bring to this. The second lens is I'm privileged to work at the Human Rights Campaign, for those of you who may not be familiar HRC is the nation's largest LGBT civil rights organization. We were founded in 1980 and we are probably most known for our work around marriage equality and the Alberta Felvey Hodges [Assumed Spelling] case which brought marriage equality to all 50 states in the US. What many people are not as familiar with is the work that we do in public education and outreach, and so HRC has a Health and Aging Program that was founded in 2013, and I serve as a Senior Specialist. And so I direct all of HRC's HIV prevention education portfolio, and I've been doing that for the past year-and-a-half and a cornerstone of that has been increasing access to and education about PrEP. Now HRC was one of the first national LGBT organizations to endorse PrEP, we did so in October of 2013 because we felt as an LGBT organization we had a moral responsibility to educate members of our community about this powerful new prevention tool as 63% of new HIV infections are among gay and bisexual men and that transgender women are likely or at least 49 times more likely to have HIV than the general population. And so these are people who are in our community, people I work with and I live with every day, and so I have the luxury, as I said, of educating people about that tool. The last thing I'll sort of say, the last lens I bring to this is the black gay man on PrEP, I've been using PrEP now for close to two years and that has been a wonderful experience that I hope to expound on with you all here today. So thank you and thank you to the sponsors for having me.
>> Great. Thank you so much. So we have a lot of questions for you and some of them, you don't all feel like you need to answer every question, you can kind of duke it out among yourselves who is going to answer what. But the first questions really are to just make sure we're all - we all have kind of the right basic understanding of what really is PrEP. So if one or more of you want to talk a little bit more about what is the regimen for someone who is on PrEP, talk a bit about the issue of adherence, that's very important. Maybe also explain the difference between PrEP and PEP.
>> The good Doctor?
>> I'll go next.
>> Okay, sure. Oh, okay, I've been nominated. So PrEP stands for pre-exposure prophylaxis, and I think the first place where I start is that the concept PrEP is different from the drug TRUVADA, right? So PrEP is a public health intervention that has also been used for other drugs or other illnesses I should say. So, for example, people who serve in countries where there are high prevalence of malaria can take anti-malaria drugs as a form of PrEP, right? So before they're exposed to malaria they take anti-malaria drugs to prevent their risk of contracting malaria. So PrEP is not a new concept, I think that's the main takeaway. It is, however, newer in the context of HIV prevention, specifically for the sexual transmission of HIV, right? And so PrEP is a public health strategy and now TRUVADA, a drug, is being used as PrEP for HIV. And you take a once daily pill to prevent HIV infection, and based on HRC's sort of analysis when taken every day in conjunction with other sort of prevention strategies it's been shown to be more than 90% effective at preventing HIV. And the regimen really is just that, a once daily pill that you take. The sort of closest analogy that I draw is that PrEP is very much like the birth control pill in a sense that you take it every day to prevent an unwanted medical condition, right? And if you don't take it it's not going to work, so adherence is critical and it sort of fluctuates. Sort of the distinction that I'll make is that PrEP has a certain degree of forgiveability, right, and so if you take it today and you've been taking it then if you miss one dose, for instance, it's not as variable as say like the birth control pill is, for instance. And so you see a doctor, the doctor will work with you to assess your risk and sort of your readiness to take PrEP, and then with sort of the support of your doctor you'll begin that regimen. And what it requires is usually counseling, right, so risk reduction counseling. You get STI testing every three months and also HIV testing to make sure that you haven't sort of seroconverted or that you don't have HIV before you start taking PrEP, right? It's very important that you are an HIV negative person who begins a PrEP regimen. And then you sort of continue to check in with your provider and work in partnership with them to make sure that it's working for you, and that's sort of the sort of process that I underwent and continue to undergo. So that's sort of a general overview, right? PrEP is not new, it's been proven to be more than 90% effective and it doesn't work unless you take it, that's sort of the three principles that I tend to highlight with people.
>> I would add just a little to that and actually expound on the point that PrEP is not TRUVADA necessarily, right? Because there's other medications that are currently under examination right now to see whether or not they might be able to also prevent HIV infection. So use of TRUVADA, though, has a long history, right, as do the other products because they are actually HIV medications. So if I were infected with HIV I would take TRUVADA in combination with another medication, and so there's a value to that is that they have a long history of use and we can use a lot of their safety data. So currently what's being looked at is predominantly HIV medications to be able to see whether or not they might be able to work. The other thing I wanted to say about adherence is that it's really - we know a lot more about how PrEP works with when your primary exposure is rectal exposure to HIV, and we know that it can be a whole lot more forgiving when you have, when your primary risk is rectal exposure. Vaginal exposure is a moving target right now and we're really trying to get a handle on what those, what that medicine relationship is. right now the recommendation for women is really it probably is going to be a lot more demanding regimen and not taking more than once a day, but really sticking with that once a day where it does appear as though if your primary risk of exposure is rectal it's a bit more forgiving. You can probably - they've found that you can have very high efficacy even when you manage only to take four doses a week. However, in the United States it is recommended to be taken daily.
>> That is the indication, it is written and prescribed to be taken daily, and I think you said this, in women when they've gone back and looked at the studies, whenever the drug was in women's systems and entrenched into women who were born women and women who are living as women it has also proven to be effective. But I think one of the things and we say in the updated strategy is the importance of developing prevention methods that are more user friendly for women and the importance of that, especially those who may be focused, who may be facing interpersonal violence or just who don't have the opportunity, the freedom or have as much control and power over their lives. You asked us to talk about PEP, also, PEP being post-exposure prophylaxis, which we've had for quite a long time, same thing, the use of HIV medication treatment to prevent HIV, but in this case it's after one has had an exposure and it's a highly effective method that if the, I shall use the word patient, the patient goes in within 72 hours of having or suspecting of having had an exposure to HIV, the patient is put on this treatment, post-exposure prophylaxis, and it has been highly, highly effective at preventing people from contracting HIV. So and I think I'm really glad you asked the question because, as I've said, we've had - I ran a health center many, many years ago and we had a PEP protocol and the uptake of PEP, itself, has not really taken off in the way that we might have thought it would. So that then begs the question how can we, why would we expect to see uptake of a pill, whereas, one is taking medication because one is really aware of having had an exposure versus PrEP, where you're just trying to prevent the exposure. So I think something to throw in the mix, as well.
>> Great. Thank you so much. So what has been the response to PrEP as a way to prevent HIV and, in particular, in the LGBTQ community?
>> You know, I think it has been - it's very interesting, it's - and a lot of what I hear is anecdotal, we're still trying to gather the data. It's something that moves very quickly and I think location, geographic location and acceptability are just all over the place. Where we have seen - I was just at USCA, the US Conference on Aids, I was talking with a group of young black gay men who, one of whom was from Dallas who shared with me that he drove from Dallas to Houston once a month or once a quarter to get his PrEP medication and support because he couldn't find a provider in his, in Dallas with whom he felt comfortable discussing affects, I mean just the range of issues that one has to engage in order to successfully be on the medication. I came here from Chicago, I was in Chicago a couple of nights, where part of my little research just online, guys are proudly putting it out there, on PrEP, on PrEP. And I think, you know, in the list of questions I was revealing there was something around stigma. I do think having guys feel comfortable with being on PrEP, saying they're on PrEP, and then saying their fear, their worry of dating, engaging with an HIV positive man is lessened, perhaps can lessen stigma at the time. But what we also know is, and saw early on, and it was just a few very loud voices, but they were there, really criticizing people for going on to PrEP and for that condom usage was important and that they were going to move, that people were going to move away from condoms. But the research as of now, self-report, is that people are continuing to use condoms, that they're maintaining fidelity to that. I think some of that is true, I think people who have used condoms continue to use condoms, but we see 50,000 new HIV infections in this country a year, somebody is not using condoms. So to have a tool then that people can use if they're not going to use condoms I think is remarkable and you see people taking, you see some uptake on it. The last thing I'll say is in the strategy update we laid out 10 quantitative indicators to measure our progress toward achieving the goals. We then also laid out three developmental indicators, one of which is the uptake of PrEP. So we will be actually convening experts to have conversations around that and really trying to, doing, setting a quantitative indicator and measure around the uptake of PrEP so that we can monitor our progress.
>> Great. Thanks. Other panelists?
>> Yes, I'll jump in there. I think we need to keep in the forefront that, you know, I hear people saying, well, if it's so great why don't people want it? And I think that that's kind of a response to the fact that we really didn't have much hoopla around PrEP. I mean PrEP came to life in a very unceremonious kind of way, and part of that was because there were some agreements to not advertise. PrEP, in fact, as part of the risk mitigation strategy, you know, drug reps didn't talk about PrEP unless they were specifically asked about it. So it was a very cautious entry into this world, and because of that we have still very large segments of communities that don't know a thing about it. And this is compounded by how long it's taking us, public health and others, to inform people about it. Because I will get people looking at me very skeptically saying, you know, well, hey, if this has been around since 2012 what's wrong with it that I don't know about it yet? Right? So there must be something wrong. And think about it from a provider perspective, as well, if you're not used to dealing with HIV medications and a drug rep is not telling you about it, you don't get any cards about it, you don't see commercials on TV about it, again, why are people being so cautious? So I think that people interpret that in different ways, but there are some concerns that I definitely have that the longer it takes us to get people aware of PrEP the more explaining it is that we have to do around it. One of the reasons that we made that video that was looping and playing was because we were working with adolescents and they really didn't have a strong understanding whatsoever of what PrEP is and they didn't have access to educational tools at that time. So I think the onus is in part on us when it comes to information and getting it out there. I think several years from now once we've done a really good job at campaigning to raise people's literacy and education around it, if there is still low uptake then we can talk about why is it that PrEP is not being really used as much as we thought it could be, but right now I think the question is on us as to why aren't we educating as vastly and as intensely as we could be, not to get people on PrEP but to make people aware that that's even an option for them.
>> Nothing to add.
>> Okay, well, Mr. Brooks did talk a bit about this issue of one of the concerns about PrEP is that it might, in fact, lead to more condomless sex. In public health we have a long and I'll say sorry history of controversy around harm reduction efforts and these kinds of arguments often come up, so I don't know if any of the other panelists want to talk a bit about that issue, which is definitely in the discourse about PrEP?
>> I'm happy to talk about that perhaps because I might have the most latitude, but in some ways. I have a friend, his name is Alex Gardner, and he'd be okay with me naming him, he's probably watching right now, actually. Hi, Alex. And he's a person living with HIV, he's been living with HIV for a long time, he is publicly out as an advocate for people living with HIV. And he once posed the question to a group of people, much like this one, that I will now pose to you because he's not here. And the question is is there value in two or more men having sex with each other without a condom? And I think that is a question that has confounded public health for a very long time because so much of gay male sexuality, and now I use gay as sort of an umbrella term for men who have sex with men, has been defined in relationship to the HIV epidemic. And PrEP for the first time is disentangling gay male sexuality from HIV, and that has serious sociological implications. I'll give you another example, my friend, who is not a PrEP user, went to San Francisco and he was on grinder [Assumed Spelling] and he was trying to find someone to hook up with. And he calls me and he says, Noel. I said what? He's like I'm so frustrated. I said why? He's like everyone is on PrEP and I'm not and no one uses condoms and I do and they're not willing to negotiate that. and it was sort of a twilight universe, right, a world in which you have men declaring that they are not going to negotiate their condom use because they weren't using condoms before, condoms didn't work for them, and now with PrEP they have the opportunity to have the type of sex they've wanted to have for a very long time, that other people are having, right, we know other people are having condomless sex because all of us are in this room and probably came from parents who were having condomless sex. So it goes back to I think that central question which is is there value in two gay men having sex without a condom? I think the answer to that question for me is yes, and to the extent it is true I think we have, one, an obligation to inform gay and bisexual men, but all people of the opportunities of PrEP, to let them know about the risk routes and realities of HIV and other STIs and to empower them to make the right decision, the best decision for themselves. And for some people that will mean condoms plus PrEP, for some people it would just mean condoms, and for some people it would just mean PrEP, but I think all of those options are equally valid. And to sort of answer the question directly as sort of Doug has alluded to we have not seen any evidence that suggests that people who are using condoms consistently before have gotten on PrEP and have abandoned them wholesale, right? That was not true of me, that was not true of any of my friends, it has not been true of anyone I know. Generally there were people who were not using condoms consistently before, would have condomless sex with someone they were attracted to, freak out, go get PrEP because they were scared of contracting HIV and then repeat the process sort of three months later, right? And so I think where I'll end is that while I think it's very important for us to have conversations about the public health and policy implications of PrEP I do think there are sociological implications of PrEP, as well, that we're just now beginning to understand and make sense of. I think gay and bisexual men in particular, but I think any person who identifies as queer or among the queer spectrum are having about what does it mean for me to be able to have the type of sex I've always wanted to have but perhaps have been afraid to have.
>> So the other pieces, there's actually work coming out around that from qualitative interviews among the participants in iPriEx by Kim Costner [Assumed Spelling] and others, but they're really unpacking some pretty fundamental changes among PrEP users of how they experience relationships and it's very much back to what Noel was just saying of when your sex and sexuality has been constructed so much around fear of HIV, imagine taking that fear away, and that's a very profoundly different experience for people when you can, as some of them have been quoted as saying, it gets HIV out of the room and allows me to stay in the room. So we're just getting a handle on how PrEP use can really shift the depth of relationships that people have, as well as what they're willing to let themselves experience. So I think we need to be really cautious because some people conflate, they hear our messages about PrEP being effective as part of a combination package. Sometimes people infer that that means that I need to be 100% all the time condom user or that if I go get PrEP I'm going to be told now take this every day and wear a condom every single time. And I think we need to back off a little bit from that and really think about what's going to work for you and really adopt a true sexual health kind of perspective, sex positive perspective and the risk reduction perspective.
>> I appreciated your also bringing it back to the context of loving relationships and from a person who has been living with HIV for 25 years, and the idea of I mean you're young people, I'm assuming some of you are sexually active. And just imagine being in a situation where you're with someone for whom you care, for whom you're hot, and but then having the thing running around in your head, oh, I need to be careful, oh, I don't want to get this person sick, oh, I don't want to infect this person. That makes for not a fun sexual encounter. So the importance of thinking about this, and so when you think about women in Africa or just women right here in Ann Arbor, Michigan who may have HIV positive partners, who are able to take medication to protect herself, protect themselves, for gay men who are - I think it - what also happens is this gets tied into a promiscuity and you know what promiscuous is, right, it's anybody who is having more sex than me. But to have - it gets tied up in a promiscuity conversation instead of a relationship conversation and wanting, as we all do, to protect the ones that we love and with whom we are intimately involved.
>> Great. Thanks. And nice segway into the next question for the panel. So we know HIV is not just a medical disease, it's also a social, economic and legal issue. So how does PrEP address issues with HIV beyond the medical impacts, issues such as stigmatization, et cetera?
>> Yes, well, I will be brief. I don't know that it does. I said what I thought around how it can help eliminate stigma in that people who are on PrEP who are feeling protected, perhaps feel less concerned about engaging with someone who is HIV positive, being in a sexual relationship with someone who is positive. When I think about PrEP in relation to those other, to the social determinants, I don't know that I have an answer. I mean my immediate response is it's not, but hopefully these two really smart people will take me on on that.
>> So from my perspective what I really enjoy is having the conversation, and I feel like even just in the last 10 years the community conversations have shifted from being very silent about HIV to really having a lot to say. So I do think that having PrEP, also the realization that having someone, you know, if someone is able to reach durable viral suppression or if they can control their HIV and that will reduce transmission, as well, we have these opportunities to talk about controlling HIV. So I think in the sense of PrEP that maybe it helps that conversation, maybe it gets people talking, maybe it allows for more conversations about status that is not alienating, not fear inducing. So I don't know, we'll see, but I think it has the potential.
>> Yes, for me, I think the only thing I'll add is looking at PrEP through one might call like an intersectional lens insofar as I think PrEP - I have a lot of really smart friends and I quote them often - and so another one of my friends once said that PrEP illuminates, you know, because people talk a lot about how hard PrEP can be to access. And I think what PrEP illuminates is sort of some of the broader challenges facing our country when it comes to healthcare provision. And so, for example, what do I mean by that? What does it mean to try to access PrEP in a state that hasn't expanded Medicaid? What does it mean to try to access PrEP if the only sort of provider of sexual and reproductive services in your area is Planned Parenthood and Planned Parenthood is under attack? What does it mean if you're trying to access PrEP as a transgender woman, but you engage in survival sex work and so you are picked up by the police and so that sort of disrupts your ability to access the PrEP that you have, right? Or that you are, you know, experiencing housing instability because you face discrimination in so many facets of your life, including healthcare? Let's say you encounter a doctor who is a trans phob, right? And has no idea how to sort of talk to you about your body or the type of sex you want to have or makes assumptions about the types of sex you're having based on your body, right? So I do think that in some ways PrEP illuminates some preexisting challenges that face the LGBT community in particular, but I think people broadly. And so often, you know, one of my friends, Alex, and others talks about PrEP as sort of a gateway issue into understanding sort of the state of healthcare in America, right, and all of the sort of corresponding pieces that go along with it. And I don't know if addressing PrEP will sort of, in turn, address poverty or, in turn, address housing instability, but I do think adjusting housing instability can only sort of strengthen people's ability to access and use PrEP, right? I do think addressing housing discrimination and discrimination against transgender people and health insurance will only strengthen their ability to access and use PrEP, right? So I do think that the inverse is true, that the more we create an infrastructure that supports people living whole and meaningful and sort of healthy lives will, in turn, impact their ability to use this to its full potential.
>> Great. Thanks. We have already had a lot of questions coming in from the audience, so I'm going to move on to that. I also want to remind people who are watching online if you have questions for the panel please tweet them to the hashtag umichprep [Assumed Spelling], one word. Let's talk about affordability of PrEP, sort of in general how much does it cost, how are people paying for it now? And an audience member wanted to know with the recent stories in the news about huge inflation of prescription drug prices in some cases what can be done to make sure that doesn't happen for this lifesaving drug?
>> So most insurance plans and Medicaid does cover PrEP, so there is coverage out there. Now where the manufacturer actually just changed it, it has had a patient assistance program and has just increased the benefits of that program in the last few weeks. And but there are still people - where the problem comes in is around copays and cost sharing that we see in the Affordable Care Act and in certain plans and then income. So the patient assistance program from the manufacturer I think is now, has gone up, benefits people up to 40% of Federal poverty level, which I think comes to about $55,000. So a person can make up to $55,000 a year and still be eligible for that patient assistance program. And I think they just made that, I'm not 100% certain but I think the maximum benefit from that is $3,600 a year, which could be very helpful. But I was just talking with someone last night who said he was - his cost sharing was about $400 a month. Now we went on to talk and I understood that it was sort of the way he had applied for or his own program and he'll be able to access the patient assistance program this coming year. And I would be remiss if I didn't stop right now and say that open enrollment has started for the Affordable Care Act, and please, please, please go to - you're probably on, probably enjoying the benefit of the Affordable Care Act, still being on your parents' insurance until you're 26, but if you have your own, open enrollment is right now and please enroll. So there's still some work, I mean there are a lot of conversations right now around drug pricing and we have many of the advocates are working on that. The incident of which I'm sure many of you are aware that has been in the news over the past few weeks certainly has drawn attention and led some of the Presidential candidates to say that the issue is something, the issue of drug pricing is something they want to pay attention to. So it is, I think it's something that's there for us to examine.
>> Right. Great. Thanks. So what's being done to, if anything, to educate medical providers so they're well equipped and know how to introduce PrEP to patients, get them on it? And then also are there adverse side effects that need to be medically managed and providers need to have training to do that adequately, as well?
>> I can speak to a thing for - I don't want to get too far ahead of it, but we at the White House are having conversations with various people about setting up and not just PrEP, but prevention centers of excellence where providers would be trained, front desk personnel would be trained. I mean there are a range of opportunities to educate people. I think it is - and we hear from young gay men often that they go into a room and are, in fact, stigmatized, are - I might even say discriminated against and they're questioned when they ask about PrEP they have - are told that they don't need to do that, they just need to behave or any range of things. So we certainly have, and I think it ties right into we have a very long way to go in educating prescribers, primary care providers who, as Rivet said earlier, may not have HIV positive people in their panel, in their patient population. So there's a significant amount of work that needs to be done on that, and it's not easy. Speaking of friends, my friends at Fenway Community Health Center [Assumed Spelling] in Boston, where actually one of the study leads, Ken Maher [Assumed Spelling], practices at Fenway, it's an LGBT, mostly LGBT community health center, very progressive, and the President of Fenway, Steve Boswell, told me back when we were in Vancouver that the work that they had to do to bring their staff along, to bring the medical staff along in understanding, prescribing, introducing PrEP was quite significant. And when you have an institution that is at that level of quality, interest - it's a research institute, as well - it means that we have a lot of work to do.
>> So we recently convened a meeting among different members of the HIV community in Michigan, last week I think it was, and we were discussing different notions for how we would really be able to educate people about PrEP and providers because we hear that story over and over again of, you know, either I can't find it or it's just so shaming to go through the process that thanks so much, I'm going to pass. And I do know, and I don't want to misspeak, but I believe it was the Health Department that just got ACDC grant and that grant I believe they are going to be targeting towards educating providers.
>> That's true.
>> And so they're going to be looking at what needs to happen there. now I think we need to be thoughtful about what providers and the ones that Doug was just talking about make a lot of sense to me, front line HIV testing counselors, people working at STD clinics or family planning clinics. I think ID docs already know what they're doing, so infectious disease doctors who are used to treating and working with these medications, they're kind of on the forefront in terms of working with the partners of individuals who are living with HIV when the partner is negative. What we do see here in Michigan, right here, is we do see novel kind of strategies emerging, like I might be your family physician, I'm not comfortable prescribing PrEP to you, but I might be willing to work with that infectious disease doc at the HIV clinic if you see them first, have them go through the criteria, make sure that you really meet criteria, maybe meet with you the first couple times and then there's a handoff to a provider that was not comfortable enough with prescribing it, although would be comfortable with monitoring it. So these are baby steps, right, that's not a long-term solution, at all. Certainly not efficient or an effective way of doing things, but as other providers get used to, hey, this is a drug that I can manage and that I can watch out for. You did ask about side effects, I mean certainly you want to watch out for liver functioning, you want to - I don't think bone density testing is a requirement, I don't think, but you may want to look out for bone density. You want someone obviously to test you for HIV each time because that's not a side effect, but if you're kind of intermittent in taking PrEP and then you do get infected and then you kind of become intermittent on PrEP again you do run the risk of developing resistance to that class of medications. But these are cases that I think people deal with on a case-by-case basis. So training is getting out there. People need to give people opportunities and time to get more comfortable. And by way of shaming and other things we need to demand and advocate for that being unacceptable. And I'll pass it over to you because ...
>> Great. I want to make two quick points that I think sort of riff off both of what you're saying. The first thing I'll say is sort of for me it was reassuring to hear that side effects are rare and reversible, right? So if there happens to be an instance of where TRUVADA is sort of, for example, affecting your liver you can stop taking the drug and the damage is reversible, right? So that's why sort of you get routine monitoring and lab testing and if your doctor sort of - and I have friends who have had sort of, you know, rare again but it happens, they've had some liver issues, the doctor said stop taking the TRUVADA for a few months, the liver functioning went back to normal and then they reassessed, right? Now the second thing I'll add and I love my provider community so I do not want this to come across as sort of a critique from a bad place, but I would be remiss as an advocate if I didn't say this, you know, my friends and I often talk about the importance of not having PrEP go the way of abortion, where you have to go to this isolated clinic, sort of off the beaten path, and constantly be judged and shamed from sort of being outside the door, walking into the door and then in the room being shamed. Any provider who can write a prescription can write you a prescription for PrEP. What I often see is that infectious disease doctors will have people come to them and ask for PrEP and they'll say but you don't have an infectious disease so why are you here, right? Go to the primary care doctor because this is a preventative tool. And the primary care doc will say, well, I'm not an HIV specialist so go to the infectious disease doctor. And it creates this back and forth that's not helpful. So while I think it is important to come up with solutions in the interim that get people the access that they need, I would hate for it to end up being the case that the only place you can get PrEP is an infectious disease doctor because that's not how it should be, right? And we've already seen the implications of what happens when a standard medical procedure like abortion becomes politicized and becomes sort of hard to access and we see that playing out today with women's sexual and reproductive health.
>> And the CDC guidelines that are available are clearly for any provider, it is not specific to a certain kind of provider.
>> Great. Thanks. So what do we know looking at how different localities, states, globally, different countries have rolled out education, implementation efforts, what do we know about sort of the best practices? And then from Twitter I want to add kind of a follow-on question from that, asking how is it that TRUVADA is available in the US but not in Canada, a decidedly more progressive country with a robust healthcare system?
>> Good question, do you want to start?
>> Okay, I'm going to try to talk a little about international.
>> Okay, got it.
>> So I believe that there are several countries that are pushing for TRUVADA to receive approval for use as PrEP right now, however, the US is the only country where we have that approval for that indication. That's not to say that South Africa, for example, is not trying really hard for that. Thailand, I believe, as well. Canada, I would imagine is pushing for that, as well.
>> The Prime Minister might help that along.
>> That's true, but, yes. So the process, though, is a slow process and it's a regulatory process, and as much as we'd like to say that that should be, it should be faster than it is. However, right now it is just the US, so we can't really speak too much about what the rollout will be from that public health perspective, but there are many demonstration projects going on and that is really going to help the rollout because some of the things that we realized in doing some of the PrEP trials, for example, the Adapt Study, which was open label PrEP in Cape Town, is that there's a fair degree of skepticism that is fair, and I mean fair as in it's just skepticism and caution towards biomedical prevention or what might be considered Western medicine for prevention. In countries where the social and political history has been one of pretty severe discrimination and other factors there that really we have a lot to think about when we think about rolling out in countries where that's really not the norm and that there's reason to be skeptical. I'm very hopeful and actually believe that we would be able to do so, but we're going to do it probably a little bit differently than what we might be looking at in the US. But do you want to talk about the rollouts in the US?
>> Yes, and then, Douglas, feel free to jump in, you might - you travel much more extensively than I do. I mean I think the cities that I'm well aware of, so places that you might think, right? So New York City is I think leading the way, a lot of their PrEP advocacy efforts. I know of a lot of my colleagues in New York who are trying really innovative models, for instance, it was talked about earlier how the manufacturers not like going to doctors and educating about the drug. So like the New York Health Department has done that, right? They go, they're educating doctors and they do follow-up visits to see like are you administering PrEP, like are more of your patients accessing PrEP, right? So they're doing some really innovative research and evaluation and data collection. San Francisco is leading the country in a lot of PrEP advocacy efforts. LA County and the City of Los Angeles, West Hollywood, but also some other places. So, for example, Mississippi has a call center, right, where clinicians in Mississippi can call and get PrEP access and that's one of the only sort of examples in its kind, especially in the Deep South. And so and I know of colleagues in sort of red state areas who are making moves quietly but, indeed, making moves to try to expand access to PrEP. I'll end with sort of two models that are being held up. One, Washington State, for instance, has something called PrEP app, which is essentially a state funded program and I think it's important to highlight, underscore and italicize that, is a state funded program that you can meet a certain set of criteria and if you're eligible the State of Washington will pay for your PrEP and PrEP related services entirely. And New York has created a similar program where they don't pay for the actual drug, but they will pay for all of the sort of cost sharing that Douglas alluded to, they'll pay for your copays, your lab visits because in their rationale they partner with the manufacturer to use those payment assistance programs so they pay - the manufacturer pays for the drug, New York State pays for the rest, right, that's sort of the model that's worked in New York. So I think more and more states are looking to create similar types of programs, but again those are state funded and as more and more states sort of divest dollars, this is I think a policy issue, as more and more states divest money away from public health and specifically prevention that spells big challenges for states who don't have the money and the resources to create programs like this. A really good example is Illinois where the - and this is sort of an example of elections matter - under a Democratic governor the State of Illinois is ready to roll out its version of sort of the Washington program PrEP for Illinois. Illinois then elected a Republican governor who then sort of took that money out of the budget and that program is not going forward anymore. So I think that also is a dimension of the conversation, but Washington State, New York, San Francisco, LA are some places I would look to for guidance.
>> Great. Thanks. So here's a Tweet from someone in our web based audience, the SCRUFF app now allows people to indicate their preferred HIV prevention measure including PrEP in their profiles, what other tools are being used to spread the word and who is engaging those stakeholders?
>> Well, I mean how many of you saw How to Get Away With Murder, right? The episode where - no, raise your hands, like I'm curious to know how many of you saw that episode, right? So I think, yes - I was talking to a friend and we said a sign of true cultural acceptance when PrEP appears in primetime television, right? It's a sign that the tide is changing. And it's a storyline that's been running for a couple episodes so it's sort of just a onetime mention. So I know that there - and I think in terms of representation matters the show runner, the head writer for How to Get Away With Murder is a gay man and he talks about how he felt a responsibility, Peter Nowak [Assumed Spelling], to include a PrEP storyline in How to Get Away With Murder, right? So I think representation matters in that instance and there are advocates, you see advocates meeting with the heads of Grindr and SCRUFF and Jack'D and other sort of online dating profiles. And I think they all feel sort of to varying degrees, but they all feel a sense of social responsibility, right, that our apps have made it more efficient and effective for people to meet each other and so we have a social responsibility to help people do that in the safest way. So I think you'll begin to see more apps and app companies roll out measures in the next year.
>> There are places online, so we've tried to - and many people have put different angles of PrEP education online, everywhere from like stories that people can experience, you know, what people have gone through, what their experiences were. I mean or what is PrEP video. It's a really boring website, I mean it's a website that has one page and it's got a video, and yet we've had thousands of visits there. We've had hundreds of requests for the video. So I think people want the information, so I think online, certainly social networking opportunities, and then also getting into the communities. So I think like visibility in the community, as well, and giving people an opportunity to ask questions is really, really helpful.
>> And without sounding like we're patting our self on the backs too much.
>> Go ahead and pat away.
>> Yes. No, actually, I was just reading something today, but I can't remember where I was reading it, that the updated strategy leaning into PrEP in the way that it does has really given a lift around the country and helped lift the conversations. So you may also read the updated National HIV Aids strategy.
>> I mean I think, just on that point, it says something that the President of the United States talks about sort of HIV and black gay men, right, I think it says something that a person living with HIV is the head of the Office of National Aids Policy, I think it says something that gay homosexual men, transgender women, queer people are visible and represented throughout the national HIV Aids strategy, right? So I think it underscores again my point that elections matter, representation matters, and I think it has done, in my world has made an enormous difference, the updated national HIV and Aids strategy. So I do thank you, Douglas, for your leadership on that and the White House and President Obama, as well.
>> I wasn't looking for that.
[ Applause ]
>> But he got it, so.
>> Great. Well, Mr. Brooks, could you elaborate a bit more on how your office is discussing and promoting the use of PrEP among women?
>> So I said earlier that we very clearly state in the strategy the importance of continuing, so we talk about research and looking at - and, you know, this kind of change is about PrEP, but we also talk about Microbicides and vaccines and options for women that work for women. So we lay that out very clearly and we engaged one of the groups, actually, the only topical conversation held as we were receiving information from around the country in preparing for this, for the strategy, was with the National Black Women's HIV-Aids Network. We convened them at the White House to hear directly from them the importance of PrEP and prevention and services for women, and many of their recommendations actually ended up in the strategy. In addition to that, I should say that on World's AID Day we will be releasing the Federal Action Plan that the Executive Order that released this strategy called for agencies across the US Government to report back to the President within 100 days on their action plans for implementing the strategy and certainly the Office of Women's Health is involved in that, as well as NIH, and we will see very concrete actions from the US Government and from and its relative agencies on this issue.
>> The CDC is launching - so the CDC is also launching a large demonstration project targeting women, right, in the United States and that should allow us to gather a lot more information about PrEP with women.
>> And there are ongoing studies we should - I think that's through NIH and other private sources, as well.
>> And I will add because I think we've talked about it, but I want to be very explicit that we do not know enough about sort of the role of PrEP in transgender women and transgender people generally. I alluded to earlier that transgender women are 49 times more likely to have HIV than the non-transgender population and that's for a number of reasons. But one, there was actually a sort of new analysis done of the iPriEx study, which was a major study that included gay and bisexual men and also transgender women, and they went back and pulled out sort of all the participants and looked at transgender women and saw, one, that PrEP worked for the transgender woman who took it, but one of the main concerns that was found is that there was a fear that sort of no one knew what would happen if you took PrEP and how it would affect their hormones, right? And so a number of transgender women were apprehensive about getting on PrEP because their immediate question was, well, how will this affect my hormones? And the answer to that question is we don't know because we don't have very good research or data on transgender women, partially because researchers often conflate transgender women with men who have sex with men so when they study sort of transgender women's health they lump them in with the men who have sex with men because of their anatomy and don't study them as women, right? These are people living as women who identify as women, who move through the world as women, and yet they're categorized as men who have sex with men. The same thing happens to transgender men who are categorized as women, right? So I think this highlights and illustrates the need for research that is responsive to the needs of transgender people and sort of research transgender people according to their gender identity, not according to some researcher's bias about how they want to categorize people.
>> Thank you. So I'd now like to read another very compelling question from our terrific audience. In light of the growing racial disparities in HIV transmission, particularly among young gay and bi black and Latino men and transwomen, as well as the stark structural inequalities as exemplified by the Detroit Metro area and other places, what strategies might be used to address the disparities among this population? Is PrEP a realistic strategy for people who lack other basic needs?
>> So I'm going to start and let you guys finish.
>> That's a smart strategy.
>> One of the things that people reflect on, that PrEP appears to be able to do, see all the caution in how I'm saying that, is that it's an opportunity to get someone's foot in the door who have never been in the door for preventative or any other really kind of care aside from the most urgent care possibly needed. So one of the things that we're seeing is an increasing number of individuals who otherwise are left out completely from the care system actually engaging in care. And I think we don't know what the long-term affects of that might be. I think the immediate affects are that we are wrapping around services, we are hooking into places where there are resources available, people are getting screened for other conditions, as well. We're hoping that if the interaction is positive enough that we might be developing cadres of individuals who were otherwise completely unrepresented now becoming better represented within the systems of care, that it really might be an opportunity if the pieces fall into place. We know at least right now regardless it is getting people into care and subsequently in places where it's possible it's getting them insurance where they didn't have it before, especially if they want to get PrEP. So it has a lot of benefits in that particular area. I'm sure I'm not covering all of them.
>> I mean that was going to be sort of my answer, sort of the gateway. The only thing I'll sort of add or do is contextualize in my own experience. When I was growing up, I grew up poor, I grew up black, obviously, and I grew up in Las Vegas, and my family didn't have health insurance, we were uninsured or we were on Medicaid for a long time. And the only time we went to the doctor was when something was wrong. I didn't have a relationship to sort of the healthcare system in a way that I understood to be preventative, right? I only went to the doctor when something was wrong, partially because that was the only time that my mother sort of had been socialized to believe it made sense to go to a doctor, but also because that kept costs down, right, very practically speaking. And so I can see in my own life how PrEP has changed my relationship to sort of the healthcare system in that I don't know if it would have happened were it not for sort of PrEP in this way. And so I'll end with sort of the statement that I alluded to earlier, I don't know if PrEP is sort of perpetuating sort of the structural inequities, but it certainly is illuminating and revealing how pressing it is for us to fix it, especially if people start to - the people who are on the margin start to demand access to it and then we say, ooh, but we don't have insurance to give you or, ooh, we don't have subsidies to give you or, ooh, we don't have providers in your area, right? Like that I think sort of is just a further indictment of the system and more reason for advocates to rally around - and by advocates I also mean all of you - in addition to the people on this panel.
>> All right, I think we might have time for two more questions if we're brief on it. So first of the two, do you envision PrEP to be a lifelong thing for a user or something people would use more in moments of risk in their life?
>> The lead researcher on the iPriEx study, which brought us PrEP, Dr. Bob Grant, is my friend, is a wonderful man who is a brilliant researcher, brilliant physician, but rooted also in social justice and equality. And Bob talks about seasons of risk, that there are times, and I think this connects to what I was saying earlier - there are times when a person may be leaving a relationship and wants to explore and wants to protect herself or himself, there are times when - I think there are some people, maybe people who are in long-term relationships with someone, a negative person who is in a long-term committed relationship with someone who is HIV positive, maybe that person is going to be on PrEP for the remainder of that relationship. But I think for some people and some of this I try to be really careful with this because it puts my opinion out there in a way, but for me ideally a person takes PrEP to protect herself, himself until she or he is in a committed relationship where they can negotiate how they're going to be in that relationship. It may mean the continuation of PrEP or it may mean they're in a situation where they don't need it any longer. So I think it depends on the person, but ideally I don't think this was something that was - is meant to be the be all and end all forever, but who knows, maybe it will be, but I don't know.
>> Okay, last question for our terrific panelists. If you were hired as an advisor or consultant to the University of Michigan what advice would you give to the University health system to provide access and appropriate uptake of PrEP in our community?
>> So the White House is not going to weigh in on that. [laughter] On the University of Michigan's healthcare system, other than to say I think any healthcare system, especially one that is situated in a top notched American University, certainly would want to provide information to the patients who are coming in and out of the doors.
>> I would say that we have an obligation to implement CDC guidelines. It's not negotiable, these are the guidelines, they need to be implemented. And I think that we're getting there. I mean like I said there was - I was referring to our own health system when I was talking about Jamie Riddell [Assumed Spelling], who hopefully he's not watching, at the HIV treatment site where he does, he works with the health clinic to be able to kind of toggle people back and forth so that they are able to get it. But at the end of the day these are guidelines that our Government is telling us that we need to implement, and like any other guideline we need to hold ourselves accountable, we need to hold the people that we can accountable for implementing the national guideline.
>> Including for testing.
>> Including for testing, as well. And so I would say that we need to start double-checking that any testing that we do certainly includes an evaluation and potential discussion of PrEP. Any time someone is coming in for STI testing, STD testing or treatment, absolutely talk about PrEP. If someone is coming for PEP, absolutely talk about PrEP. And I think that there's no harm done in having the conversation.
>> And rectal gonorrhea.
>> Rectal gonorrhea, as well.
>> Oral gonorrhea.
>> Or oral gonorrhea. So I think the point being that you lose nothing by having the conversation, so I think that we need to really facilitate and do what we need to do to just start having the conversation.
>> That's right.
>> Great. Well, thank you. We had many more questions we didn't get to get to, so I apologize to everyone in the audience. We couldn't get to all your terrific questions. My time here is done, but I'm going to pass on the microphone to Michael Manansala [Assumed Spelling], who will end our fun time here together.
[ Applause ]
>> Thank you, everyone. Thank you so much for coming. Thank you to our panelists for being here and engaging us in this very timely and very important discussion. I'm sure you guys have a lot more questions and I hope that you guys sort of continue on the conversation beyond the walls of this school. I just want to thank everyone again for coming. I want to specifically thank all the outgroups on campus, outbreak for creating a wonderful Prep 101 materials, Steven [Assumed Spelling], thank you designing that, that was very great. Out MD [Assumed Spelling], as well, OSTEM [Assumed Spelling], Out for Business, Outlaws, Lambda Grads, thank you so much for bringing in everyone, all your constituents. I really appreciate your presence. Feel free to get some materials out, so there are a lot of materials on PrEP and on HIV prevention and sexual wellbeing outside in the Great Hall. And at nine o'clock we will have a post-panel happy hour at Circus Bar, the Daily Blue Campaign sponsored by the HRC will also be running there, as well.
>> And I do - I'm so sorry - I know I'm supposed to be brief, but I have to say, I mean I'm local so I am at the School of Public Health. I also work at the Sex Lab. So both myself and other people I work with are very invested in getting this word out, so if you have ideas, if you have some thoughts about getting trainings out there, really calling people to task on this, come and see us, we are available to you, we are part of this community. So I just wanted to make sure that everyone is aware of that before we close. So thanks.
>> And on that note let's give our panelists another round of applause. Thank you.
[ Applause ]