As a prescient college student and gay New Yorker in 1994, Demetre Daskalakis, M.D., vowed "I'm going to take care of HIV. I don't want anyone to get this, and I don't want anyone to die anymore."
This vision took him to medical school (where he snuck into AIDS wards as a young medical student) and into the labs and clinics where the fight against HIV has progressed but never ended. And it took him into the heart of the epidemic in New York City, where he led HIV prevention efforts and testing in bathhouses and sex clubs. Now, Daskalakis will leave his role as medical director of the HIV/AIDS services at Mount Sinai Hospital to serve as assistant health commissioner in New York City's Bureau of HIV/AIDS Prevention and Control, overseeing a $200-million budget and programs spanning testing, prevention, services, care and treatment. Terri Wilder spoke with Daskalakis as he prepared to lead efforts against HIV/AIDS in one of the U.S. cities hardest hit by the disease.
I always thought of the New York City Department of Health as the largest Department of Health in the country and the epicenter of the HIV epidemic. Can you tell me why you would be interested in going to the largest Department of Health, in the middle of the epicenter of where HIV is?
My New York story is the reason why. I was a student at Columbia University as an undergrad and while I was there, I really became a New Yorker, and became a gay New Yorker. I experienced nightlife and that piece of the universe. It was sometime around 1994 that I, along with a few other people -- I was a resident advisor and a community program assistant, is what they called us -- decided that we were going to do something that was gay health oriented, and about HIV. So we decided to do a benefit for a direct service organization and then, also, bring a display of the AIDS Memorial Quilt here.
Thinking of myself as a pretty good transplanted Virginian who lives in New York, I thought this was a great opportunity to do something nice for the city that was about HIV. And so I had no idea of what I was really getting myself into because it was the pivotal moment in my career that showed me that I was going to do HIV in the future, and specifically do HIV medicine. Because I remember the day that we actually laid the quilt down; it was before antiretroviral therapy as we know it kicked in. All of a sudden, I was surrounded by people who were mourning folks on the quilt, and who were really sick themselves.
I remember standing there that day really exhausted -- because it's a really daunting task to get that quilt out and laid out -- and said, "I'm going to take care of HIV. I don't want anyone to get this, and I don't want anyone to die anymore." There was a very adolescent decision, but this core decision made me do HIV.
I went to medical school in New York, and I had experience with HIV on the Bellevue wards, because I actually snuck on to the AIDS ward. I wasn't allowed on it -- as a medical student, there were some restrictions. I figured out that the best way to do it was to sneak on, so I snuck on so I could learn something about HIV medicine. And then I decided that it would be good to see the world, and see how other people do medicine.
Ultimately, I matched for my residency in Boston, at the Harvard program, Beth Israel Deaconess Medical Center. That place was fabulous. It inspired me to keep doing HIV medicine, with a couple of significant mentors who showed the way of doing primary care for HIV.
Who were they?
John Doweiko and Howard Libman were two of the doctors whom I worked with in Boston who were very inspiring when I was a resident, to keep going. And Chief Resident Wendy Stead, who was not that much older than me, but was the smartest person I knew, and the most compassionate HIV doctor. She really taught me the path.
Then I decided to stay in Boston. I did my fellowship at the Brigham and Women's/Mass General program, where I'm literally surrounded by the Raj Gandhis and Paul Saxes of the world, and all of these fabulous HIV doctors with the Partners AIDS Research Center -- now that's called Rangon Center. I ultimately met Eric Rosenberg. Eric Rosenberg was a researcher in acute HIV infection/immunology. And I decided that I was going to be one of his mentees, that I was going to be in his lab.
I never wanted to do lab work; I always wanted to just do community-oriented health. I went into the lab and it was great. I was doing work. I was getting results. And I remember just sitting -- it was February, and I was sitting -- googling Lord-knows-what, and I saw news saying that there was a case of acute HIV infection in New York City, with rapid progression to AIDS and multi-drug resistance. And this cascade of feelings happened to me there. I said, "Why am I in Boston? I've kind of lost my way. I signed up for this because of the population in New York that inspired me to do this." All of a sudden, I find myself with cell cultures and petri dishes and exciting academia and I was away from what brought me to this story.
Tom Frieden was on the television talking about this case. I ran downstairs and started calling people to see if there were any jobs available in New York, because I wanted to come back and focus more on clinical stuff, and potentially more public health-oriented approaches to HIV.
Ultimately, Judith Aberg decided that she saw some potential in me and offered me a job to come back to NYU/Bellevue, and I did. And that case drove the rest of my story. Soon thereafter they said that that case of acute HIV infection was transmitted by somebody who had an encounter with a person living with HIV at a bathhouse in the city. That made me decide that, well, then we're going to start doing something in the bathhouses, and do HIV testing and prevention there.
On the back of some research funding, I was able to start a program and then, soon thereafter, the city funded it through HHC [Health and Hospitals Corporation] to actually continue doing HIV testing as a clinical service. So, really, my entire story of why I'm doing what I'm doing revolves around the public health of the city. Being away from the epicenter was killing me, at one point.
Spiritually killing me. That day, I knew I was not where I was supposed to be. And so I decided to come back to the epicenter and, having worked with the Department of Health and having seen some of the good that they can do, when the opportunity arose to become the assistant commissioner, I jumped on it. Even though I'm happy where I am at Mount Sinai and love doing my clinical duties, I always feel like a lot of my strength comes from the programmatic piece, and from the piece that revolves around public health. Sometimes I would feel as if I couldn't really focus on that. So that's where the decision came from. I'm going from a clinical venue to a more public health venue.
The truth is, in the context of my time, I also went back to Harvard and I got my master's of public health. I was just thinking about it this morning, that sometimes my happiest times in the last four or five years were in the setting of crunching numbers in a public health environment, and talking about program development and cost effectiveness and environmental medicine -- all the things that come with public health. So it just seemed as if that same case that brought me back to New York was, in some ways, leading me right down the path, right back to New York City.
How did you decide, "I'm going to apply?" What was it that kind of intersected in order for you to say, "Yes, I'm going to apply to be the assistant commissioner in the largest Department of Health in the country"?
True story: Dr. Aberg, who is now the chief of infectious diseases at Mount Sinai and who has been my mentor in New York since the day I landed here in 2005, sent this email out to me to forward to other people, which I did.
And it was that job description?
Right. And I did forward it. But that same day I emailed the Department of Health. I emailed Dr. Varma and I said, "Hey, Dr. Varma, remember me? I'm the guy from meningitis vaccines, and I'm going to apply for this when it becomes open."
And he said, "OK, keep an eye out. When it becomes open, throw your application in. That sounds great." And then I called. And since I did work with the city, I called some people and I said, "What do you think?" And the response was, "Totally. Do it."
I had a lot of soul searching. I talked to my husband. I talked to some of my folks from the past, my doctors in the past. I called Paul Sax, and I said, "What do I do?" And everybody seemed to agree with my idea -- that this maybe would be a good thing for me to do next.
Can you tell me specifically something that somebody said to you that made you go, "You know what? I really do need to do this."
It's not really something that someone said to me, but something that someone sent to me: Mark Harrington.
Who's the Treatment Action Group executive director, and a former ACT UP member.
Exactly. When he got wind that I was contemplating it, I got an email with the subject line "History is Calling," and it was this very inspiring email -- saying "this is what it's all led to." He was an external person saying the same thing that I had been saying to myself. I actually probably value Mark's opinion more than the little voice in my head, because he's been through all of this. So that was really inspiring to me, to get someone who I personally am inspired by, in terms of the activist role that I've had in the past, to say to me, "You know what? Step up and do it." So that's a big deal.
Same goes with Paul Sax. Paul Sax is a clinical mentor and so, when Paul said, "This is a good thing. What do you think?" And I told him what I thought, and he said, "Sounds like the right thing." He's one of the people whose opinions I really value. So the combination of having someone who is a role model in the activist world and someone who is a role model in the clinical universe say to you the same thing that matches the voice in your head, says that it's worth taking the risk and seeing what it's all about to be a public health official in the largest Department of Health in the epicenter of HIV.
I've always perceived you as a little bit of a cowboy, thinking about your work in sex venues, and how you grabbed on to the meningitis outbreak and just said, "I'm going to jump in, and we're going to do something about this." Your predecessors in these roles probably wouldn't be labeled as kind of a cowboy, or a cowgirl. I'm not saying this in a critical way, but they have a different style than you.
When I think of you, I'm like, "Wow. He really does public health." You just don't talk about it as theories -- about "stages of change," and all the stuff that we think about when we go get our degrees in public health; you actually go do it. And you do it at 3 o'clock in the morning. Because you go to where people are.
Government tends to be a little conservative -- or at least, most people perceive it to be. What is your vision for running this bureau in a culture that may not be used to this cowboy kind of vision of how we look at public health?
First, when I think of cowboy, I think of people who are doing things with no evidence base, and just doing it from their gut. So I feel that -- though I am somebody who moves from theory to action fairly quickly -- most of the things that I've done have tended to follow lines of evidence. And that's the public health human in me.
I feel that the city has made a pretty significant vote of confidence in somebody who is willing to move from theory to action very quickly by offering me the job. I have a learning curve, for sure, in terms of how to work within government. That's going to be something that I'm going to learn and for that, thankfully, I have really good mentors already at the Department of Health to guide me through.
The bureau is great. The department is great. Dr. Bassett: amazing. Dr. Varma: amazing. So these are people I'm going to ask questions, as we go along. But ultimately, I think that my job there is to move theory into action as quickly as possible. So that's what I'm landing to do as my charge.
Government may be slow, and I'm going to learn some of the limits. But then, ultimately, what drives my actions is that I always try to do what I think is the right thing, based on the evidence, and based on what's good for the community at risk, or the community living with HIV.
So that's ultimately my answer, which is: I'm going to, I'm sure, make some mistakes, in terms of government. But I'm not going to make a lot of mistakes, in terms of doing the right thing.
You were interviewed by The New York Times minutes after probably you were offered the position.
And the headline for that particular article said, "Credibility Among Gay Men Gives Leverage to New York City's New Chief of HIV Prevention." That is not exactly correct -- that's not all you're doing. You're not just the chief of HIV prevention in that Bureau of AIDS. You are definitely over HIV prevention, but you're also over care and treatment. There's an epidemiology unit. There is housing for people with HIV that's embedded within the bureau. Talk to me a little bit about your ideas. Let's start with care and treatment.
Care and treatment is also a little bit of a misnomer, because you're not funding medical care; it's social services that the bureau funds.
Now that you are in the seat where you could make some changes, are there things that you've already thought about, like, "Wow, if I could change this, I would do it?"
The background that I'm coming with isn't just an HIV, first of all, prevention background. I'm coming from the perspective of a medical director of a really big HIV clinic, and also as someone who's done HIV care for years and years, both within a city system, and in a more traditional health care system -- not an HHC facility, not a city facility. So I feel that we've already had important conversations about some of the social services and some of the main issues that are facing people living with HIV in the city that we need to address.
One of the most important ones has to do with the people who are not engaged in care. I mean the people who are, frankly, at risk of dying. There's a lot that the Department of Health already has in terms of infrastructure to be able to assist clinics to get people engaged in care. One of the things I really want to focus on is ways to look at the field presence of the Department of Health, not only for new diagnoses, but potentially for people who are just missing.
We're in this sweet spot from the perspective of policy, where we have the ability now to use surveillance information with clinicians to figure out the best way to identify people who need such services. So that's going to be one of the things that I want to focus on -- to look at the population of people who are coming in and out of the hospital who have been diagnosed with HIV, who have low T cells and detectable viral loads, and who aren't connecting to the system, to really figure out ways that we can re-engage them on their terms.
There may be a lot of ideas behind that. I'm going to develop that as I land in the bureau. But I've already started thinking about some ideas about how to make that presence bigger. So that's one.
Housing is critical -- I guess I'm transitioning into housing.
That's still kind of care --
Right. I think housing is critical. We're going to have to understand better what the goals are of HIV housing, like HASA and HOPWA and all of that, and figure out what its role is in the broader population. And what the definitions are for people who utilize those services and who get those benefits. I think it's really important for us to scrutinize and see what is the optimal use of that. So I'm just starting to scratch the surface of housing in the Department of Health. But the good news is that there are a lot of smart people who have worked in this area at the Department of Health for years and who I'm going to be able to access to address some of the barriers that I felt as a consumer of these services.
From the perspective of a clinician on the ground, I think that there are definitely some barriers, and some of those barriers actually impact care, in terms of getting people into housing. So it's going to be an area of emphasis but, again, a learning curve on that. Because administratively, I'm not on the intake side of that; I'm on the outtake side. So I'm using those services as a provider, and have definite insights into how that goes.
One of the interesting things about the bureau is that there is an element of silos that happens -- just like with, I'm sure, every organization that we've ever worked at in our lives. So, prevention is kind of over here; care is over here; epidemiology is over here.
There are activists in New York City who wonder, "Why doesn't the Prevention Planning Group ever meet with the Ryan White Planning Council group? And shouldn't they be talking?" I mean, if for no other reason, we now have PEP [post-exposure prophylaxis] and PrEP [pre-exposure prophylaxis].
I have a very philosophical answer to this, which will then, I hope, engender conversations at the Department of Health that will lead to exactly what you're asking. Philosophically speaking, one of the things that I believe is that there is no differentiation between HIV prevention and HIV care. I think it is the same thing.
What I mean by that is, the tools that we use in HIV care are exactly the tools that you need in HIV prevention to prevent HIV infections. So, what you use to keep people healthy with HIV -- mental health services, substance abuse services, housing services -- that's all one continuum. And so, philosophically speaking, though the Department of Health does not fund care, per se --
-- medical care, per se -- it's going to be really important for us to look at those services and try to provide the services needed to people living with HIV; but also to make them HIV-neutral, and really look and see how we can spread those in a way that actually also addresses the fact that the same problems that led to HIV infection, and that continue to be a part of people's lives, are also the issues that can be prevented to avert HIV infection.
The idea of really breaking down the silos between prevention and treatment, and services focusing on people living with HIV, is going to be key. And I think, in lots of ways, epidemiology kind of lives in the middle.
And so, if you design this in a way, and really focus on looking at the bureau and say, "How can we break these silos down and have it all center on epidemiology, that is going to be the key. Epidemiology is a common strain that connects many of the silos included in the bureau or any other large HIV-associated endeavor. Recognizing the common strain of data-based decision making in both treatment and prevention, as well as the synergy of the tools in both "silos," implies a potentially HIV-neutral approach to HIV. I think that's going to be the key -- which is to say, we have this amazing data coming in from people living with HIV; we have the potential for great data coming from people who are at risk for HIV. You've got this epidemiology core and this powerful amount of data that can change how things are done by aligning resources to the goal of controlling HIV/AIDS without regard to a treatment or prevention silo. The lines are blurred.
Prevention groups and treatment groups need to coalesce -- at least, in some conversations.
I'll take it back to the clinic: When I meet a patient who is at risk for HIV, the conversation I have with them is barely different than the one I'm having with the person who has HIV. It is the exact same conversation. But sometimes I'm limited to what I can do. I don't have access to some of the services for them.
So I think we have to look at that critically and say: If we're creating this treatment cascade for New York, are we missing a bar? Is the bar of people who are at risk missing? And how can we maintain that bar of people at risk and deal with them without compromising our eyes on the prize? Which is not that treatment is just treatment-for-prevention, but treatment's for treatment! Treatment saves lives! I remember. I saw that. I know. And so, I feel like it's going to be an interesting balance of how to [not only] homogenize the experience into an HIV-neutral zone, but also maintain the important services for people living with HIV.
Again, I'm landing there with that philosophy and, hopefully, a lot of political will above me to do that. But, you know, treatment needs to be central; and prevention needs to be central, too. And I just think that they are the same, in so many ways.
How do you see your relationship with the Ryan White Planning Council? And how do you see your relationship with the Prevention Planning Group? Because historically the assistant commissioner would come to one or two meetings a year, and that was kind of it.
I think there are some people who think, "Oh, these groups, they're legislatively mandated, but maybe they should just go away. And you just do what we tell you to."
Right. You'll have to ask me this question when I'm there for longer than, like, a minute. But I've always felt like you have to listen more, and speak less, when it comes to the community. And I feel that community presence for a leader in HIV is key and what differentiates a leader in HIV from a leader in, like, food handling.
I'm sure there is a very strong community presence for food handling and for whoever gives you your grades at the Department of Health. But I feel like HIV is unique, in that the community tie is critical.
There are going to be moments where I'm not going to be popular with the community. I'm going to have to make decisions that are based on some fiscal realities, and some political realities, that aren't going to be popular. But my perspective is to listen more and speak less, so I can learn.
I think it would also be important to not forget that there's a reason why the Ryan White Planning Council is legislatively mandated.
Oh, yeah. Oh, no, no, no, no. For sure.
Because there was a time where people with HIV were not allowed at the table.
For various reasons. And they fought for that space, to be able to be part of it. And they made sure it happened legally.
Coming from a clinic environment and from a research environment -- and also, frankly, a CBO [community-based organization] environment, with my time at GMHC -- being in touch and in really close and clear contact with a community advisory board is a very familiar experience. And, in effect, these are just giant community advisory boards, with very significant say in the direction of where funding goes. So I feel like that's not a foreign experience to me. And it's not legislatively mandated just to appease anybody. It's mandated because there's a role.
Can I speak about the timing of my meetings with them? I really can't yet. But do I want to have a presence with them? I think that the answer is, "Absolutely." And I want to, again, listen more and speak less so I have a sense of what's going on.
Because I know what I think is important. And every time I think I know what's important, I always learn something from my patients, or from someone in the community, that I'm missing a piece. And so that's really the point that I get.
I know how to prescribe PrEP. I think I know how to make PrEP better. I know how to do HIV care, and to refer people to services. I know what services people with HIV need -- at least from the perspective of a provider -- but listening to people who are living with HIV, or who are major stakeholders in the community, is critical in guiding it. This is why I think it's good to not be a public health lifer coming in. Because I'm coming from the perspective of listening to people who are living with the disease every day.
I wish I could answer the question and say I'm going to meet with the committees every week. But I don't know the answer to that. But am I going to listen to what they're saying and not just pretend to? Of course I am. That's super-important.
What is your macro goal walking in? What is your initial vision, or hope, or goal, for your new role?
It's the same goal I had when I was 20 years old, staring at the people coming in to look at the quilt, the same exact goal -- which is to figure out a way to have fewer people get HIV, and fewer people get sick from it. And when I had that thought in 1994, there was nothing I really had in my mind to offer. HAART [highly active antiretroviral therapy] wasn't really there. People were getting sick. Prevention was only condoms. People were still getting HIV. There was nothing really to offer.
So, now, my macro vision is to leverage what is a really significant amount of political goodwill nationally, on the state level, and locally in the city, to really achieve that adolescent dream that I had at 20, of figuring out a way to have fewer people get HIV, and fewer people get sick from it. For me, that really means being a little bit iconoclastic, in terms of how we look at treatment and prevention -- and, again, to acknowledge that we now need to enter a brave new world of it being one continuum.
So that's my macro vision -- which is to try to inspire change, whether it be through policy, whether it be through funding, or whether it be through detailing providers and making face time with people who are major stakeholders, clinically and in the community, to really get everyone to understand that. Academics, science, public health, the community need to all work together. And everybody has specific strengths and specific weaknesses. But they tend to have some harmony. So that's my global vision -- which is that we have the tools, and we have all the right people at the table, and that I just have to be a good orchestrator to make it happen.
In the last year, ACT UP has been a little tough on the city health department. At this time last year, there was a demonstration. You talk about the community, and stakeholders, and having conversations. Where do you see groups like ACT UP and VOCAL, or the activist personalities, in this conversation?
From my perspective, there's really a specific role that activists do, and that's to push an agenda -- which is really important. So very often to push an agenda, especially now, in this world of malaise and fatigue around HIV, you have to do it in a loud, and very clear, way. There has to be a level of drama and attention. And it's something that I respect from all activist groups. I've done it. So I know.
And so my reaction to where does ACT UP fit: It fits exactly where it fit 30 years ago -- which is, to push the agenda. And so it's amazing that the agenda that is being pushed now is really one that in many ways is being supported by political will, but will require activists to have a loud voice to make it actually achieve the goals it needs for the community.
Ultimately, I can sit here and say we need to implement PrEP better, or we need to make PEP more accessible, or we need to remove some of the lines between HIV and STIs [sexually transmitted infections] so we can achieve the goal of a more unified system. I can say that, but then I need to hear not only community voices from the setting of a community advisory board, but also some voices that are more radicalized. Because somewhere in there is the truth -- whether it's your mild-mannered community answer, your public health government answer, or your more radical voice. All of them somehow participate in the truth. And so you have to listen.
It's the same thing I said before: Listen more, speak less.
When's your first day at work?
Sept. 8, I think. Theoretically.
Well, good luck to you. And congratulations on your new job.
This transcript has been lightly edited for clarity.