TEDxUCLA 2016: Push. Pull. Stretch.
PrEP for HIV prevention: the best worst-kept secret
So I’m an infectious disease doctor, and that means I spend an enormous amount of my time thinking and talking about wounds, sores, pus, poop, and let me tell you, if you actually do that at a dinner party, it’s a guarantee of a way never to be invited back.
But my specialty is actually HIV prevention, and I first became interested in HIV when I was in medical school. And as part of medical school training, you spend your third and fourth years of medical school in the hospital in a sort of apprenticeship to actual doctors.
And I remember very clearly in my third year of medical school, I was in my starched white coat and I was making our medical rounds on the ward of a hospital, and I was helping take care of a 40-year-old man who had a very severe brain infection. And the reason he had that brain infection was because he had HIV, and HIV causes a severe immunodeficiency called AIDS. And he had clearly been HIV-infected for a very long time but had never been tested until he came in with this very severe brain infection.
And I remember making rounds one day and, and the, the patient’s long-term doctor was on the ward that morning as we made rounds, and I sort of gathered my wits and I went up to him and I said, “Why didn’t you ever test this patient for HIV?” And he was a very senior physician, gray hair, and glasses perched on the end of his nose. And he took a moment and he looked over his glasses at me and he said, “I don’t do AIDS.”
And I thought to myself, “What does that even mean?”
Does that mean that it’s too complicated? That he’s just not up on current treatments? Or is it something more sinister? Does he not want to take care of people who get AIDS? And I was very disturbed by that, and I said in that moment, “I’m going to be the best HIV AIDS doctor I can possibly be.”
Fast-forward to now, when I have medical students of my own and I teach them about HIV and AIDS, I always start by saying, “Who are the people that you worry about getting HIV infection? Who would you test?” And invariably the students list off a long list of correct epidemiologic groups: gay men, people who inject drugs, transgender individuals, people from areas of the world where HIV is very prevalent, people who exchange sex for drugs or money. And that’s all true.
But I always cut them off and I say, “Well isn’t sort of the final common issue that someone had condomless sex? And the most common way we have children is to have condomless sex. How many of you have children?” And invariably some of the students have children and they’ve raised their hand and I said, “Well have you ever been tested for HIV?” And… silence.
And the CDC, you know, the U.S. government organization that gives us recommendations on these sorts of things, tells us that anyone aged 13 to 65 should be tested for HIV at least once. And people from those more historically epidemiologic groups should be tested more often than that. So you know, if you believe me that that’s true, and if you also believe me that HIV treatment has gotten so much better over the 30 years of the epidemic that people who are HIV-infected, if they’re in care and treated and can take their medications, can lead a nearly normal-length life. But there are still complications that happen from HIV infection that make it something that you would rather avoid.
Next question that obviously comes up is, what can we do to prevent getting HIV infection if we are in fact at risk, which is anyone who has sex without a condom? And it would be great if we had a vaccine. We use vaccines to prevent a lot of infectious diseases, we have a lot of experience with that, but we don’t have a vaccine. And it’s really unclear when or if we’re ever going to have a vaccine for HIV.
And you know, there turns out that there is something else. There are condoms, and you might have heard of them. And condoms, you know, people have a complicated relationship with them. I mean number one, they’re not perfect. And number two, people seem to not enjoy using condoms. So when you add that together, it results in sort of a scary statistic, and that’s every year in the United States there are still 50,000 new HIV infections. Every year worldwide there are still four million new HIV infections. And so we need something more. Everything we’re doing right now to help prevent new HIV infections isn’t making a dent.
So is there anything more? And the answer is maybe yes. I like to think so. There’s a new technology, it’s called Pre-Exposure Prophylaxis — prophylaxis in this case I use to mean prevention — and we abbreviate that PrEP. And PrEP is this concept of taking a pill, it’s an anti-HIV pill, and you take it every day and it prevents you from getting HIV infection.
Now you might stop right there and say, “Hold up. That’s crazy. That’s absolutely nuts. Why would you give an anti-HIV medication to someone who doesn’t have HIV? It must have side effects. It’s probably expensive. I’m going to have to go to the doctor, I’m going to have to have blood tests. What a pain in the neck. That’s insane.”
Or is it?
We are actually part of an era of medicine where we’re changing from the past, where people would only go to the doctor when they already had a disease or a problem to get treated to this sort of, this model where we try and prevent disease, a preventive revolution if you will. And if you think about it, we do this all the time. People take aspirin or blood pressure medications, cholesterol-lowering medications, to prevent heart attacks and strokes. People take calcium and vitamin D to prevent fractures from osteoporosis or weak bones. And I want to be very clear that I’m aware that pregnancy is not a disease, but don’t some women take a birth control pill every day regardless of whether or not they’re planning to have sex without a condom on that day because they don’t want to get pregnant if they do, and they want the confidence to be able to not have to worry about it and be prepared?
Well it turns out PrEP for HIV is exactly the same thing. It’s a pill that you take every day regardless of what your plans are regarding having sex at all, much less condomless sex, because you don’t want to get HIV if you happen to come in its way.
So you might say “Okay, well that sounds interesting, but does it work?” And I get asked this a lot and the answer is yes. The clinical trial data show us that if taken every day as prescribed, it’s more than 90 percent protective against getting HIV infection, some people say as much as 99 percent protective against HIV infection. Nothing is perfect, nothing’s 100 percent, that’s important to remember, but it’s pretty darn good.
And you might say then, “All right, if I believe you about that, it must have horrible side effects. It must be incredibly toxic.” And it turns out it’s kind of not. We have a lot of experience with some of these medications because it’s a piece of an HIV cocktail that you would treat to someone who has HIV infection, so we know its safety profile, and sure it requires some blood test monitoring and some careful understanding of things to watch out for. But there aren’t any showstoppers that would make you say “this isn’t safe, don’t do that,” particularly for people who are at risk.
So if you say, “Okay, I’ll grant you that. Why on earth don’t I know about that?” Well I actually give PrEP to a fair number of patients who come to see me in clinic and I’m surprised by how many people have never heard about this. It kind of blows my mind, this has sort of been approved by the FDA in the United States since 2012, and the clinical trials have had the data to support it since 2010.
But even more concerning is I’ve heard some horror stories of patients who have heard about this who’ve gone to doctors and some of those doctors have no idea what this is. And patients have to educate the doctors about this. So I’m more and more encouraging people to educate themselves before they go to the doctor so that they can educate providers who might not have heard about this. I find that scary.
But what’s even more disheartening is there are some providers out there who are completely anti-PrEP. They’ll tell people not to do it. Worse, they’ll shame people who come in asking for it. We call that slut-shaming. They’ll say, “You’re promiscuous if you want to go on this. Can’t you just use a condom?”
There is a billboard in Hollywood that went up this week that says “Grow Up, America. Use a Condom.” But with the number of new infections we’re having every year, clearly that’s not working. I think that really has no place, that sort of moralism has no role when we have a public health issue of this kind. We need new inventions, interventions.
I also worry a lot about whether people who are most at risk for HIV have never heard about this. People who are less plugged into mainstream communities, into medical systems, who have medical mistrust, and I worry about how we can do a better job about letting people know that this works and it’s available.
And just out of curiosity, how many of you have an iPhone? Yeah. And how many of you had to go out the first day the new iPhone was available and get the new iPhone? Yeah. So Apple clearly has done something right in making us think a brand is sexy and want that and need it and think it’s integral.
There’s so much stigma, so much shame around HIV that we can’t even talk about HIV prevention openly. How do we let people know, how do we market this? I do think we have some pages to take out of Apple’s book to learn how to teach people about public health interventions. We’re not good at it, we’re not trained to do it. No, I’m not saying that they should come out with direct-to-consumer marketing on television, “ask your doctor or pharmacist about,” because I hate that. Literally, you could ask my family, when commercials for medicines come on TV, I start throwing things at the television. I hate that. I think it’s inappropriate.
But I do think that there is a lot to be learned about how we educate people about this really powerful and exciting new technology. And you know like I mentioned to you before, one of the most common things that I get asked when I talk about PrEP to people who might use it is, if this is all true, if you are not lying to me, if in fact there is this technology which someone who is HIV negative can use to protect themselves and doesn’t rely on somebody else’s using a condom or not or someone else’s behavior, or in parts of the world where people might not have a say in whether or not they’re gonna have sex that day because of power dynamics or other issues, much less that there’s going to condom use, how — if this is that new powerful technology available — how come I haven’t heard about it?
Well now you all have heard about it.
And so my challenge to you today is to go out and talk about it. Talk about it with your friends who might be at risk. Talk about it to anyone who might have sex without a condom. Talk about it at the water coolers, talk about it in the office. Start removing this shame and the stigma that is associated with HIV and HIV prevention.
For me, the future is tremendously exciting with regard to PrEP. You might say: “Daily pills: complicated.” It’s not the end. Before I came up here I took a Tums. But when Tums was available for reflux disease, for heartburn, we didn’t stop with Tums, right? We made Zantac or Pepcid or something else, and after that we made the little purple pill, Nexium, because we wanted something better, something safer, something more effective.
And we’re not done with the currently available pill a day that is available and approved by the FDA for PrEP. There are really exciting things coming down the pike. There are long-acting injectable versions of PrEP that could be given as infrequently as every two or three months. There are going to be some implantable rods that can go under the skin to deliver sustained amounts of these anti-HIV medications. There are intravenous infusions that could be given very occasionally. There are pills that could be taken every couple of days, or maybe even once a week or less frequently. There are sort of flexible rings that women could use intravaginally where impregnating lubricants with these anti-HIV medications to combine the function of a lubricant with anti-HIV properties, all tremendously exciting.
So personally, my journey has evolved a lot since I was that third-year medical student on the wards. I’m no longer quite as focused on being the best HIV/AIDS doctor that I can be. I’m focused on giving people options for HIV prevention because no one size is going to fit all. The more options we have for people, the more likely something is going to be acceptable to a given person.
Some people are great with condoms and to them I say, “Good on you. Keep using them. Don’t stop.” But some people, for whatever reason, can’t, won’t, or don’t use a condom. And we need something more for them.
I have one patient who comes to see me like clockwork every three months and he’s on PrEP, and he tells me how much more comfort this has given him in his sex life. But more importantly every time he comes in to get tested, he used to have a panic attack because he was concerned of what he would find on that HIV test. And now he doesn’t have that panic anymore.
I believe that with these new technologies that help us prevent HIV, we actually can end the HIV/AIDS epidemic worldwide. Thank you.