Fatima Cody Stanford, MD, MPH, MPA: Practicing Medicine as a Black Woman
Episode #17 of the Charged podcast
PodcastJan | 23 | 2019
Since beginning her medical career as an intern at Johns Hopkins Hospital in the mid-1990s, Rochelle P. Walensky, MD, MPH, has witnessed the transformation of the landscape for HIV and AIDS. Though new drugs have dramatically improved the survival outlook for these patients, the challenges of accessing and maintaining care, along with the stigma surrounding the disease persist. In this episode, Dr. Walensky, who now serves as chief of the Infectious Diseases Division, discusses how she has worked to help expand access to care for HIV patients, through her research and her willingness to understand patients’ struggles.
Rochelle P. Walensky, MD, MPH, chief of the Infectious Diseases Division and co-director of Mass General's Medical Practice Evaluation Center, dedicates her research to analyzing the cost-effectiveness of HIV testing, treatment and prevention to influence HIV/AIDS policy in the U.S. and other parts of the world.
As the first investigator to assess the survival benefits of AIDS treatment in the U.S., Dr. Walensky's work helped justify more investment in research and treatment. She also influenced U.S. policy toward promoting routine HIV screening in clinical settings. Over the course of her career, her research has expanded to include France, Côte d’Ivoire, India, South Africa, Uganda and Zimbabwe.
Dr. Walensky has been a member of the Cost-effectiveness of Preventing AIDS Complications (CEPAC) team since 1998. She is a member of the HIV Medical Association Board of Directors and the Department of Health and Human Services Panel on Antiretroviral Guidelines for Adults and Adolescents.
In 2010, she received the Harvard Medical Young Mentor award. In 2016, she received the A. Clifford Barger Mentoring award.
Dr. Walensky earned her BA from Washington University in St. Louis and her MD from Johns Hopkins University School of Medicine. She holds an MPH from the Harvard School of Public Health.
In 1995, Dr. Rochelle Walensky began her medical career as an intern at Johns Hopkins Hospital. Soon after, the FDA approved the third drug in the original drug cocktail to treat HIV. This had a tremendous, immediate impact on the treatment landscape and survival outlook for people living with HIV. It also inspired Rochelle to begin a successful and impactful career in the field of infectious disease. Rochelle was one of the first investigators to assess the cumulative survival benefits of AIDS treatment in the United States. This helped justify increased investment in research and treatment. Today, HIV and AIDS have continued to pose a challenge to clinicians despite these advances in treatment, particularly in resource-poor settings.
In response, Rochelle’s research focus has extended abroad to examine global policy and cost effective strategies for care. Today, over two decades a husband and three children later, she's the chief of the Infectious Disease Division at Mass General, which gives her a unique perspective to discuss the changing landscape of HIV and AIDS treatment and where research is headed next. So welcome, Rochelle.
A: Thank you very much. What a pleasure to be here.
Q: So, I know you started your career, really, at the height of the AIDS crisis. And I'm wondering if we can start there and you can just talk about what it was like to start in medicine at that time.
A: Right. You know, the number, the kinds of people we saw in the wards in inner city Baltimore in 1995 were really socially isolated, often injection drug users. We were at this cusp where most injection drug users were, at the time, men and we were just starting to see actually women get sick with HIV. So a lot of men had previously died, but it was their sexual partners or more women injection drug users who are now first entering the hospital.
What was really tragic in the mid-‘90s was we could tell you you had HIV, and we could treat your pneumocystis pneumonia, your cryptococcal meningitis, but we couldn’t treat your HIV itself. So all we could really do was sort of keep getting you out of immediate trouble, but we couldn’t do anything over the long term to sort of say you have a real potential for life ahead of you.
Q: What was it like to work with a patient and have that in front of you?
A: There were some patients who had led a tough life, who were difficult and belligerent. And then there were some patients who had been cast off by their families, who had been stigmatized, who had been ostracized and who were their family. And you knew based on the latter that the former, the anger, was probably really related to really being down and out.
So our job was to make the hospital their comfort place. And sometimes, they were receptive to that and sometimes they weren't. But so many of the patients, many of the gay men at the time, really had been cast off by their families both for being gay, and then when they found out they were actually sick with HIV, stigma-- was, and is still, a real problem. And it was tragic for these folks who didn’t necessarily have families. You always cherished the situations where the families were at the bedside because that didn't happen that often.
Q: I've read accounts and seen photos, and it’s hard to imagine that time where there was so much uncertainty.
A: So I wasn't there at the time where they didn't know the inciting agent, that they didn't understand the blood supply was part of the problem here. But I was there at the time where there was nothing you could offer. So, in fact, there wasn’t uncertainty. It was a certainty of death until we made medical progress.
So that was really the beginning of my training. We knew for certain we could potentially get you out of this acute problem. We didn't know for certain we could get you beyond, and another year.
Q: To back up a little bit. Coming into your training, did you know that HIV was what you wanted to do?
A: I had no idea. [laughter] You know, I had no idea. And in fact, you know, I remember where I was, I was in medical school, when the front page of the paper showed Magic Johnson announcing he had HIV. But I didn't know how much HIV would shape my training. I didn't know that half the people who would be admitted in a given night would be some ramification of their HIV disease.
I did numerous rotations in many different places in dermatology, but I was driven to this because it was what I was seeing. I've always sort of fashioned myself as someone who takes care of the whole patient, not the heart, not the GI tract. I take care of an infection wherever it is. And then the sort of root causes of those infections in social justice sorts of ways.
Q: Can you talk a little bit more about that social justice piece?
A: Many of these patients-- and this is still true today with HIV, with tuberculosis-- with infectious diseases reach that because of poverty, reach that because of poor living conditions, reach that because of tight quarters. And so if we're going to make an impact in any of those infectious causes of their diseases, we really need to make an impact in bigger ways. I mean, I can treat you out of whatever it is you have today. I can't treat you out of poverty. And that just sort of brings you back into that space.
So a lot of what I think about is how is it that we can not see you again in the medical setting because we've improved whatever it is that the conditions were? And that's hard, right? We have tools and medicine to treat the disease. We don’t necessarily have tools and medicine to treat the bigger change.
Q: Yeah, absolutely. That makes a lot of sense. So going back to your training, what was it like to go from this-- you don’t have a lot to offer patients to being able to offer treatment?
A: Right. So, what we knew when I started in ’95 was that HIV infected your immune system, your CD4 cell counts. And those CD4 cell counts would drop and you could tell based on how low they were how much trouble you were in in terms of your immune system.
We started to learn in late 1995 that there was this thing called your viral load; how much HIV virus was circulating in your blood? And it was up to a million copies per milliliter. I mean, really high amounts of virus. So, if you had that much virus circulating in your blood, we could sort of tell how much virus was there and how much virus was not. And what we could tell is the level of virus was what was chewing at your CD4 cells.
We used to say the virus was the speed of a train heading to the cliff, and the CD4 cell count was how close you were to the cliff. So you could sort of get a measure of how you were doing based on how much virus was there and what your CD4 cell count was.
And just around that time, we had these new drugs available. And what we could tell that these drugs did is they stopped the train so they would suppress your virus. You'd have no virus in your blood, or no detectable virus in your blood and they’d move your train backwards. They’d increase your CD4 count.
And all of a sudden with those drugs, and that was sort of deemed “the cocktail,” or highly effective antiretroviral therapy heart, with those drugs, you could sort of get yourself out of trouble and live longer.
Now, at the time in ’95, the gift of life, and in fact this was a gift, was about 14 pills a day. And so it was not easy. These were pretty toxic medicines. A lot of them had a lot of side effects; headaches, anemias, kidney stones. But, they allowed you to live.
Q: And when you say 14 pills, is it I get up in the morning and I take 14 pills?
A: It was multiple times a day, it was some you have to take with food, some you have to take without food, some you have to take with water. And so it was a complex regimen depending on which one you were on. And it was an unforgiving regimen. So if you decided one day, or two days or a few days not to take your medicines, your virus would get resistant and they’d no longer work.
A: Yeah, so in these socially marginalized, oftentimes homeless, oftentimes injection drug-using populations, we would say, “You don’t have many chances at this. You better be really be ready.” In fact, I remember long ago, what I would do is I would tell patients, “Here's 14 jellybeans. Take several three times a day and come back. And if you can't do that, if you're not ready for this-- because if you certainly can't take jellybeans and they don’t have too many side effects, you're not going to be able to tolerate what I'm about to give you.”
We used to withhold the medicines, not because we didn't want to treat people, but because we were so worried about resistance and that our patients would blow through their options. And then when they were really ready to take something, there would be nothing left to give them.
Q: Wow, can you talk a little bit more about what it was like?
A: It was hard, it was really hard. There were a lot of things that were written, and even in resource-limited settings, like, what if you don’t have access to a clock? How do you know what times of day to take them?
And that was a really stigmatizing time. Folks would say, “Well, maybe really it’s just the very adherent, compliant, gay white men who can take these meds. But, in fact, our injection drug users can't.” And that was quickly debunked. And, in fact, it was also debunked internationally where we said, “In fact, in some settings, folks in resource poor settings are taking drugs better than we can here in the United States.”
But what started to happen is more and more drug regimens became available and it became clear that over time, you could move from one regimen to another and you would have a couple of sequential options. And it became very clear that you could not withhold medicines from folks just because you didn't think that they were ready to take them.
So there was this trade off. It’s interesting to see the evolution the DHHS guidelines. First, it was treat everybody only when they get really sick. So, CD4 is less than 200, definition of AIDS. Don’t start meds until then.
Why? Because we wanted to withhold them to make sure you had options later. And also because you're not really that sick. You're not really in the danger zone. And finally, because they're toxic, right? At the time, you could make somebody pretty sick by giving them these meds, or at least diminish their day to day quality of life.
Over time, the meds got better, they got easier to take, they got less toxic. And over time, the guidelines have actually swung the other direction. And in fact, today they say the day you know they have HIV, they should be on meds. And today, treatment is one pill once a day, many regimens.
A: So it’s not that you don’t need multiple drugs, but they’ve co-formulated the drugs so you can take it into one pill. So that's 23 years of progress.
Q: When you talk about the toxicity piece, people talk about chemo and you get nausea, losing your hair. Is it a similar sort of toxicity?
A: It was a bit less than what you think about chemo. But folks would get pretty anemic with AZT. They might get changes in their fat deposition. So things that we're stigmatizing you could tell in their face they would have wasting or adiposity in their centrally fat deposition. Such that people could kind of tell you had been on this regimen or that.
One of the regimens with Efavirenz was associated with depression and even suicidal ideation, changes in sleep habits. One with Indinavir was really associated with a very high rate of kidney stones. So, we used to hear gay men say if you were drinking water, people knew you had HIV. Because it was like you needed to drink a gallon of water a day while you're on Indinavir. So you were a gay man walking around with a water bottle, and people sort of stigmatized you for that. It was incredible.
Q: Are there certain patients or certain clinical experiences that have stayed with you, or maybe touchstones, that you go back to?
A: Yeah. Well, I remember being on the wards on Christmastime and I was on the AIDS ward in December of ’96. So there was drug, but not everybody was getting it, by any stretch. It was expensive at the time. And the hospital was full of patients with AIDS over Christmas. And what was so striking about it is how quiet the AIDS ward was over Christmas. It wasn’t that there weren't nurses, it’s that there weren't families.
And Don Bartlett used to come in a Santa suit and bring the AIDS patients gloves and a lot of things that they needed, and how appreciative they were. I vividly remember those times.
I remember a patient who was dying in the ICU. We were doing our best, obviously, but there was not a lot we could offer him. Now, this was an interesting gentleman, and he had an antique car collection. And his family had written him off when they knew he was gay and had HIV. So he actually asked to donate his car collection to the nurses on the AIDS ward. However, when he was dying, his family came back and they accused the hospital of letting him die so they could have his cars.
Q: Wow. You know, I’m curious too, what's it like today? We've made all this progress and the treatments are better. I've read that people who are diagnosed today, their lifespan can be normal, or approaching normal?
A: Yeah, it’s amazing. It's amazing it’s happened during never mind my lifetime, during my medical career, right? So we're now at one pill once a day. We now are talking about problems like the silver tsunami, the aging of the folks with HIV.
Now, in ’95, we used to routinely have folks who would max out on their credit cards because they assumed they wouldn’t be around to pay it. [laughter]
A: That happened a lot. And so now, obviously, we don’t do that. I think in many situations, the diagnosis of HIV is way easier and perhaps more promising than many diagnoses of cancer, right? But it still carries some stigma. It still has some weight to it.
It’s interesting to see how behaviors in communities at risk have evolved over time. Like now, people know there's really good treatment. The treatment still has some modest toxicities, but over the long term, they're generally things we can manage. There are many more treatment options out there; things that were approved in 1995, we don’t even give anymore. The evolution has been so rapid. And folks who take their meds, and I qualify that with folks who know they have HIV and take their meds, really have a fulfilling, long life they could potentially live. We run into challenges still with socially marginalized people who get their diagnoses late.
People who are not socially equipped enough to routinely take their meds, routinely get back to clinic. And in fact, there's still an epidemic, much of it in the south, in the black south, of men who have sex with men. There has been some liberalization, shall I say, of behaviors knowing that there's treatment out there. So it’s not the death sentence it once was. And so some folks sort of say, “If I get HIV, I’ll be treated.”
Q: Yeah, if I get it, I get it, but I’m going to live my life.
A: Right. But it’s interesting because those are not the same generation of people who lost all of their loved ones. That generation’s still alive, too.
Q: I was listening to a talk yesterday and the presenter was talking about how there's sort of this missing generation particularly in the gay community of people who-- they all died.
A: We just had our remembrance ceremony on Friday for World AIDS Day. And every year we remember the people who we've lost this past year in the HIV clinic. And it’s interesting to see how the numbers have changed, right? There used to be many, many and there are not anymore. But one of the folks made a comment, one of the patients, an older gay man who said, “I took care of so many. Who’s going to take care of me?”
Q: Yeah. You hear people talk about going to a funeral once a week and sitting in the hospital and being sick yourself.
Q: Can you talk a little bit about patient advocacy and the role that that has played over time?
A: Yeah. I think HIV patient advocacy has changed the landscape of advocacy in all of medicine. So, the story goes, one of the big challenges was that they were starting to understand these drugs and try to get FDA approval for drugs, AZT for example.
And patients were dying while it was happening. And it was perceived that the FDA, the NIH, everybody was taking their own sweet time getting this into the publication and into the literature on approval after approval. And gay men were losing family members, loved ones, day by day by day. And so they protested outside of NIH. And they said, “We don’t have time for this. You can go through whatever processes you want, but we need those drugs now.”
And so there was this feeling that, you know, everybody was worried about how toxic they might be except the men who needed it, right? They were saying, “We're going to die anyway, so give us anything. We’ll take anything.” And so they protested in front of NIH, in front of the FDA, and one of the most brilliant maneuvers I think at the time was Tony Fauci, who was then the head of NIAID, still is the head of NIAID, said, “Let them in. I want them at the table and I want to hear what they have to say and I want to talk to them.”
We have now on the guidelines, we have a community member. Most IRB boards now have a community member. So there has been this incredible role of advocacy, this sort of saying what is it that you, who actually have this disease, want? There are many risks out there, but you're living the risks by having the disease itself.
So I think it’s been central. I think that is now the standard of what happens in cancer, it happens in many other diseases as well. It happens now in resource-limited settings. When we do research in refugee settlements in Uganda, we have a community advisory board, because we need to hear the voices of the people affected and inflicted with this disease. So I think it’s been central.
Q: One thing I wanted to ask you a little more about was you mentioned that HIV is still a big problem in the south. Is there a particular reason why?
A: Oh, you know, there's been some interesting work that look at the policies of the south. It’s red, you know? It’s not lost that Medicaid didn't expand in some of these states; that laws around incarceration, laws around meds after incarceration, sexual health in the high schools, teaching of sexual health in the high schools, ability and comfort in coming out as gay.
All of those things affect access to medical care, HIV screening, and liberalization of speaking about such topics. And when you're not liberal to speak about them, people don’t access the care that they need, and they don’t access the education that they need. They don’t access, and can't access the meds they need. And so I don't think it’s a mistake that, in fact, if you look at the epidemic, it’s not that far from where you look at party lines.
Q: And the Medicaid piece, that's important in getting people access to care?
A: It's important to getting people access to all kinds of care. The antiretroviral drugs that I'm talking about these days cost somewhere between $45,000 and $50,000 a year.
So the good news is we can keep people alive a really long time. The bad news is the price tag is forever $45,000 a year. And so Ryan White Care Act, for example, did a lot to expand that access. But access to meds and access to even that patchwork of meds that through Ryan White Care is all state-guided.
And we used to see people who’d move states when they got HIV because they knew if they lived in Nebraska, they would have less options for their treatment than if they lived in New York, Massachusetts, Maryland.
Q: And is there still some of that or is it becoming--?
A: It’s becoming better. But I still think access in the south is a problem. And you can see it. I had the privilege of going down to the Ponce de Leon Clinic in Atlanta. And it very much feels there as if you might as well be-- I mean, the care is extraordinary, but the busyness of sick people with HIV, you could be in Africa.
And they told a funny story. There's a bus that stops at the Ponce de Leon Clinic, and I rode that bus. And they said that it used to be that the bus would stop at the Ponce de Leon Clinic and say, “AIDS clinic.” [laughter] So nobody got off at the bus stop, not surprisingly. Somebody had to tell the bus driver, “Could you not say that so we’ll actually get off here?”
Q: Yeah, it’s interesting, too, the way society sees the illness and treats it and the way that people who have it interact with it.
A: Right. Well, I know people, many people, with HIV and it doesn’t affect me at all. I think not all society is like that. I've never walked in their shoes-- but I think you don’t have to walk that far in their shoes to realize that it’s still not so easy. And, in fact, I would say it’s, again, not so easy.
Q: Another thing I've been thinking about as we've been talking is different media portrayals of the illness over time. You know, “Philadelphia” way back when, but even now TV shows like “Pose.” Do you have a sense that that has had an impact?
A: You know, it’s interesting. I think our children will be our heroes in this. And so I'm really encouraged by that. Now, we sit at a very liberal dinner table under my roof, as you can imagine. But my kids have all seen “Philadelphia.” They think it’s antiquated from the ‘80s, right?
But when we talk about difficult issues, they don’t perceive them as difficult. We talk about suicide, we talk about a kid in school who’s transitioning from girl to boy or boy to girl. And they say, “So?” We are so used to that being a challenge. We, in my generation, are so used to that being a challenging conversation. I didn't know anyone in high school who had come out as gay. They know many. I didn't know anyone in high school who was trans, they know several.
“Philadelphia,” it’s interesting, “Philadelphia” happened at a time when-- around the time Ronald Reagan had never said the word HIV. And by not addressing it, you promote fear, right? What you really need to say is, “We're figuring this out and there's nothing to be scared of.”
Q: When you talk to your children and you're guiding them, are there skills that you're teaching them to help combat that fear piece?
A: Yeah. I mean, I think it’s a little bit of walk in somebody else’s shoes. We open it up, we talk about it, we learn about it. I think so much of fear is ignorance and lack of knowledge and lack of understanding and realizing, actually-- we have an expression in my household. He puts his pants on one leg at a time just like you do. [laughter] You know, like everybody puts their pants on one leg at a time. So I think we sort of try and plant that at the dinner table and in their actions and what they do.
You know, I do the AIDS walk. So I had one situation several years back where one of my old patients from the Brigham from years ago who, quite honestly, I was pleasantly shocked to see still alive. He was not terrific about taking his meds when I took care of him. But he’s thin, he’s frail, he's an elderly black gentleman. And not somebody I’d necessarily run into in my own CVS.
And I saw him at the AIDS walk. And I went up to him and I gave him a big hug. And my son said, “Ha, Mom, who was that?” Just not somebody he would have thought I would have known necessarily. And I said, “You know, let me introduce you.”
My husband’s a pediatric oncologist. A lot of his patients are bald and we go to a lot of pediatric oncology events. And so my kids sort of say, like, “This is what they're living through right now.”
Q: What a model for them.
A: Yeah. I mean, I think what it does say is whatever we have at this dinner table tonight, we are lucky because we are not dealing with a lot of things that other people are.
Q: As your children have grown, have you seen their understanding and perspective shift?
A: Yeah, for sure. I mean, they know when we're not home for dinner that we're doing something that we need to be doing. I'm not necessarily the first person to volunteer for the PTO, I’ll be quite honest. But it is the case that when I get called by HIVMA, the medical association, the policy association that's in Washington to say something at Congress, I will move heaven and earth to make that happen because I feel like I can. That's what I'm supposed to be doing. And they know that I have to do that.
Q: You mentioned a little bit earlier your research, and I'm wondering if you can talk a little bit more about your research and what you've spent these years studying?
A: When I was at Hopkins, they had a very strong epidemiological component. And when I moved to Boston, I knew I wanted to do something quantitative with regard to science. I met Ken Freeburg, a wonderful research mentor of mine, and he was doing cost effectiveness analysis in HIV policy. Very early, this was in ’98.
He had just 2001 published a paper demonstrating that $15,000 a year for antiretroviral therapy, which is what it was at the time, was cost effective. And that actually put on the map the fact that we could be treating these people and it was good policy to treat these people, because you could take young people, give them expensive drugs and have them live much, much longer. It wasn't a short-term intervention, it was a long-term intervention.
So I started working with him. We work in a group called the CEPAC group, the Cost Effectiveness of Preventing AIDS Complications. You can tell the title is old because the word AIDS is in it and not HIV. We model the disease and since its start, we have modeled new interventions for the disease.
So when there was potential cure that was discovered several years ago in the Berlin patient, we modeled what that might look like. We modeled what testing would look like. We modeled what pre-exposure prophylaxis, or PREP, would look like. And every time there's a new intervention, we try and model it to demonstrate what are the costs that'll be associated with it, what are the clinical outcomes that might be associated with it, and can we demonstrate the cost and the outcomes in a cost effectiveness analysis?
In the early 2000s, the biggest problem was, quite honestly, that now we had treatment, but people didn't know they had HIV. The CDC published in 1993 their HIV screening guidelines. Bernie Branson wrote them, and he always said of the 1993 screening guidelines, they are the most ignored guidelines ever written. [laughter] Nobody was testing for HIV. And in part because there was not a lot you could do about it.
Now, that is kind of okay when you think about something like, Huntington’s or cancer. It’s not so okay when it’s transmissible because if there's nothing else you can do, at least you can sort of say, “Wear a condom,” right? But it still wasn't happening.
And so what we started to learn in the early 2000s in the beginning of my research career was that most of HIV was being transmitted by people who didn't know they had it. And so it became very clear that we needed to do something quickly about HIV screening. And so I started to do some pilot projects with the state of Massachusetts, actually, sort of demonstrating that if you just tested folks for HIV, you'd actually find it.
There was a lot of pushback on that. At the time, you needed written informed consent to get an HIV test. And we spent a lot of time talking about the difference between a colonoscopy screening test, which required anesthesia and a prep and an OR room, and a $10 HIV test, which you could potentially get back immediately.
We also did a big cost effectiveness analysis. In 2005, it was published led by David Paltiel in our group, and demonstrating that it was actually cost effective to screen for HIV. So, at the time about a third of people in the U.S. who had HIV didn't know they had it. And we've really gotten down those numbers such that now about 15% of people with HIV don’t know they have it.
One of the other problems that we started to tackle is what's called-- we call now the “cascade of care.” The holy grail of treatment is to get folks virologically suppressed, that virus that I talked about circulating in the blood. The studies have now shown if you have no virus in your blood, you actually can't transmit it to somebody else.
So what we really want in this cascade of care is of the people who have HIV to have them know they have it, to have them linked care, to have them get antiretroviral therapy, and then be suppressed on that antiretroviral therapy. And there are lots of different leakages in that cascade, as you can imagine, in a population that might be socially marginalized. The CDC data now suggests about 57% of people who have HIV are virologically suppressed.
We still have a lot of work to do in that space. So I've spent a lot of my research time thinking through pieces of that cascade, whether it’s how much do we invest in getting people linked to care? How good does an antiretroviral therapy have to be? How good does an adherence intervention have to be? What if we spend $500 per patient on an adherence intervention so that they could actually take their meds really well? Turns out it’s not just for their benefit, but it’s for the benefit of others who they might transit to. And so that's where I've spent a lot of my time both here in the U.S. and also internationally.
Q: And I've read that the numbers in the United States of adherence and treatment and viral loads are actually lower than a lot of other countries, including countries in Africa?
A: It’s true, it’s true. There are countries that are doing this better. So Botswana-- 90% diagnosed, 90% on ART, 90% suppressed. If you do that math, if you get that wave, then 73% of people will be suppressed. And while you can't necessarily get every last person on a mountain and while you still do need, and should always need permission to test somebody for HIV, and there are some people who don’t want to be tested, it is the case that there are numerous resource limited settings, including Botswana, that have reached 90/90/90.
Q: And what are they doing different?
A: You know, so much is about the implementation. It turns out, not surprisingly, that the people that we enroll in trials are not the same people who need the care, right? We screen out a lot of people who need the care when we enroll in trials.
In the communities, it’s harder. And I think we have a lot of lessons that we can learn from our international settings. They're using drones to deliver antiretroviral meds, they're using a lot of technology. They're using text messaging to remind people to take their meds. They're using satellite and pill bottle caps-- to demonstrate whether they opened their pill bottle cap.
So there's incredible technology that they're using. And, quite honestly, there's political motivation. So with political motivation, you know when Debswana lost a lot of their diamond workers because that middle generation all started getting so sick, it became very clear that they really needed them to be well. So there, political motivation. Where epidemics in the rural South, maybe not so much, and a very sad sort of state.
Q: When you think about looking forward, what's your outlook?
A: Yeah. You know, our science is pretty darn good. We have a test that we can give you results within 10 or 15 minutes that's probably less than $10 each. We can give you antiretroviral meds that if you take them, you will be suppressed. They're relatively nontoxic. A lot of the work we have in front of us is related to implementation. And how is it that we deliver these people drug that they need in a way that is suitable for them to receive it?
It’s interesting, there was a prevention study in Africa that was done, massive, multi-million dollar study using PREP, pre-exposure prophylaxis both orally and vaginally for women. And what they found after numerous years of enrollment, 5,000 women enrolled in three countries, so very large study, most of the women didn't take it.
And that was a tragic sort of eye-opening lesson that sort of said, actually, what we really need to do is talk to the women about what they want, how they want it, how they want to receive it, and what will be the good experience for them. So I think a lot of our challenge now is in the implementation.
If you don’t want an HIV test and you're among the 14% of people who haven’t had one, why, right? Like, what is it that we can do to sort of facilitate-- is it that you're too scared? Should we put it in the DMV? Do you want to receive it somewhere else? Do you want to receive it in your place of work? Do you not want to get those drugs in your community? Do you want mail order prescriptions? Are you afraid of mail order prescriptions?
So I think a lot of the work that we have is in implementation of the tools that we have. Right now, we have some pretty extraordinary tools.
The benefits that we're getting are at the margin to the next new drug that comes around. There are some new advancements that I think are really exciting to think about; long-acting drugs. So can we inject you for a month with your regimen so you don’t have to take those pills?
We still are looking for a cure. We know a cure is possible because there's been one person cured. Now, it’s not a replicable plan, but we are still avidly in search of a cure. We are avidly in search of a vaccine.
I suspect, we may have another ten years. And during that time, the science that we need to do now is really in the implementation so that people get earlier drug, they get diagnosed earlier. They're not giving it to their loved ones. We have still in the United States, last year, 40,000 new infections a year. We shouldn’t be having that.
Q: All right. Well, before I let you go, I have my final five questions. What's the best advice you’ve ever gotten?
A: I've gotten a lot of sound advice. You know, be happy. It’s a privilege to be at this institution at this hospital, and I know that every day that I come here. Just every once in a while, pinch yourself and say, “We're working really hard. We're doing great things for our patients. We're doing great things in research and advancing science. But are you happy?” So I would say just make sure every once in a while you're happy.
Q: That's good advice. The name of this podcast is Charged. What does the word “charged” mean to you?
A: [laughter] So, it’s got two connotations, right? One is very negative. It's charged with a crime. Charged to me is energy, it’s electrical energy, right? It's the charge of an electron or the charge of a proton. So, it’s energy.
Q: So how do you stay charged?
A: I completely believe in my mission. So, I completely believe in the care that I give to my patients. I completely believe in the advocacy and the science that I do. And then I would say the most important to me is my family. And so I check out every once in a while, we go on vacation, we vacation hard. And I make sure that they know that I'm theirs during that time.
And then I would also say I have dinner every night together as a family. It may not be the most elegant of dinners, but we do have dinner every night together.
Q: When and where are you happiest?
A: I'm going to give that a three-pronged approach. I'm happy when I'm with my kids, when we are chatting about something that is interesting to them. I'm happy when I'm doing my research and I have this eureka moment of like, “Yes, this is very interesting, very cool.” And I'm happy at the bedside, when you feel like you're doing something for somebody else.
Q: What rituals help you have a successful day?
A: Huh. I get my kids off to school. You know, they're teenagers now, I have three teenage boys. And for the life of them, they would love to leave the house without giving me a kiss goodbye. And every day I call them back, like, “You haven’t finished up yet.”
I do believe, you know, teenagers, it’s hard times, right? But I believe you start every day and you end every day with a things are good, life is pretty good.
Q: Well, that concludes our time together.
A: Thank you so much. What a pleasure to be here.
Q: Thank you, it’s been wonderful to talk with you.
A: Thank you.
Charged is a podcast devoted to uncovering the stories of the women at Mass General who break boundaries and provide exceptional care.
Episode #17 of the Charged podcast
Episode #19 of the Charged podcast