 Next, I'm delighted to bring up another friend and colleague, Dr. Emily Landon. She's the medical director of antimicrobial stewardship and infection control here at the University of Chicago. She's an assistant professor of medicine and an assistant director of the McLean Center for Clinical Medical Ethics. She is interested in the ethics of quality improvement research and the application of public health ethics to infection prevention in hospitals. Today, Dr. Landon will give a talk on HIV exceptionalism. Please join me in giving a warm welcome to Dr. Emily Landon. Sorry, I guess this is really live, huh? Hi, everybody. I have a disclosure about hand hygiene, but I don't think you all care very much about that. Today's talk is actually, I need to be very clear up front. This is a paper that is being written largely by Cassandra Ehrler, who's one of our... She's one of our ID fellows, but she was also an ethics fellow here. And Valerie Cook, whom you've already heard from this conference. And so these thoughts are ours together, not just mine. And I'm not saying that because they're super controversial. They're not actually that. Okay, so anyway, first let's start with a little bit of HIV history. The first cases of HIV happened in about 1981. And we had transmission modes were finally figured out and people had some idea what was happening around 1983. By 1985, we had a test available in 1987. There was a drug, AZT, doesn't work at all on its own, by the way. In 1987, HIV was added to a short list of infections barring entry into the United States. This is when we started to realize, or people started to think, that HIV was different than other things. And that we needed to treat people with HIV differently. In fact, many patients with HIV did not undergo any sort of needed surgeries because of concern on the part of some surgeons. We can debate the ethics of that issue separately. But in 1990, the ADA actually prohibited discrimination against people with HIV because they were so vulnerable that we felt the need to actually protect them from a government standpoint. Anti-discrimination laws were actually meant to limit third party disclosure so that people didn't have to tell other people in order for them to get care because people with HIV, living with HIV who were on this short leash of a life with very little left to do in order to take care of their HIV didn't want other people to stop caring for them, not pay attention to them and treat them like they were in some sort of quarantine which was in many cases really what happened to these people. But in 1996, Proteus inhibitors became available and the adoption of highly active antiretroviral therapy or these drug cocktails were amazing in that they started to save people's lives. People at the brink of death started to get better. And things have only gotten better since then. We now have multiple single tablet, well tolerated first line therapies available for people who were no longer, I think people remember from TV at the time if you were around that people would have to set timers for when they had to take their pills every three or four hours and they would get very sick from them. Now that's not how it is at all. It's just take your big tarvy and live your life. Everything's going to be fine. There are also strong salvage drug regimens available for people that did go through time periods where they developed or developed resistant virus. We have great social programs to pay for these drugs. I almost never run across a patient that can't receive literally any expensive drug regimen they want because of a safety net, a patchwork of safety net programs that help provide care even to people with limited insurance. And the ACA for all the things that we might want to say, that some people may want to say about it, did make that a lot better for HIV patients. Vertical transmission from mother to child has almost completely been eliminated and we now have these test and treat initiatives which are aimed at eliminating HIV. The point is that we now know if you can reduce the viral load to such a level that it is undetectable on our current tests, people will not really transmit their HIV. We're all very reluctant to say that they're no longer infectious and that it's perfectly fine for you to have unprotected sex with them. But it turns out that looks like it may be the case, which kind of changes the way we think about HIV, right? Now the most important thing is not so much allowing these people to live the rest of their lives in safety and security and privacy, but rather we need to figure out who has HIV and get them on these medicines so they're not giving it to anyone else. That's why we have programs like PREP. Some of you have heard about this. It's pre-exposure prophylaxis. It's one pill once a day that people do not have HIV can take in order to avoid getting HIV and have sex with whomever they want. Although we don't recommend that either just for the record. So I want to talk today about how our policies regarding secrecy and privacy of health information can affect what patients, the public and even healthcare providers feel and think about how they act about a given disease. Specifically in the case of HIV, we argue that respect for autonomy as practiced by protecting the right to privacy above and beyond what is expected for other medical conditions actually can harm other people. And I know this is a hard sell because autonomy is king, right? But I want you to consider that there are lots of times when autonomy is not king and infectious diseases are a good example of that, right? Healthcare entities can legally release private health information to public health authorities without patient authorization without even telling the patient for the purpose of preventing or controlling disease injury or disability. And that includes many infections. If you get influenza and you get tested in the American hospital, you absolutely, your name and your influenza status can go to the public health department without you even knowing about it. Because we collectively as a society have rules that say, oh, yes, tracking those infections is much more important. And I would argue if tracking influenza is important, and we already do mandatory report HIV. Perhaps there's more that we could, if we're willing to take away everybody's rights every single year to privacy about their influenza status, perhaps we could do the same a little bit more about HIV. So think about this with respect to testing, right? So HIV testing in the beginning, when the test came out at first, it was really like who wants to have a test for HIV? I don't know if I'm going to die. And so many, many people didn't want to be tested. And so there was this whole movement to have written informed consent required. Almost every state had a law about written informed consent. Basically getting an HIV test required the same level of scrutiny and discussion as having a major surgery, like we talked about in the hours before lunch. However, this has been changed because the way that the disease has changed has changed the way we think about whether or not we should be asking people, whether or not we should be giving them information and basically putting them off getting tested. In fact, we now have mostly opt out testing for pregnant women and many states just do it anyway. Like they're sort of not even, you can't opt out. It's going to be done. And in many places, including in Illinois, you can document that the patient opted in to HIV testing anywhere in the medical record if it wasn't included in the general hospitalization consent when you got admitted to the hospital. And it's okay to test without consent for the cases of organ donation or if an employee gets exposed to your blood. Or when you can't obtain consent and testing is needed to take care of the patient so that obtunded ICU patient, John Doe, who came in after a trauma, they're all getting tested for HIV because we need to know if they have HIV in order to be able to care for them. But the disclosure laws are completely different. No person may disclose or be compelled to disclose HIV-related information except to the subject of the test or the test subject's legally authorized representative. A lot of other mumbo jumbo, but then also important to us, any person designated in a legally effective authorization for release of the HIV-related information executed by the subject of the HIV-related information or the subject's legally authorized representative. It's a lot of words. It basically means you need to be real careful if you're going to tell anybody about an HIV status. And that becomes a problem. Because we don't really know why we still have all these rules about HIV. It's separate. That's not just HIPAA. It's beyond HIPAA. Should we be liberalizing this? Why are we treating HIV, which now has a lower mortality rate than diabetes? Why are we treating it differently? So this comes into play, especially when we have a surrogate. And yes, it does happen. This is the case from a couple of weeks ago. 47-year-old woman admitted with weight loss and an altered mental status who's confirmed diagnosis of HIV not on antiretroviral therapy. Her MRI of her head and other study results give concern for HIV encephalitis. Her awareness levels inconsistent. She does know that when she's alert, she's aware of her diagnosis and that she hasn't been getting care and she doesn't want ART, but she doesn't want us to tell her partner, who is her husband of many, many years. Her husband is her confirmed healthcare decision-maker. She wants him to make decisions for her. But please don't tell him that I have HIV. It happens all the time. It seems unlikely that he's gone this long without knowing her HIV status, because this is not her first time being sick in a hospital, but he didn't bring it up to the team. And the primary team hasn't said anything because they don't want to divulge HIV status without her consent. So they call an ethics console. Questions for the ethics console. Should we tell the husband and who should inform him? I mean, we have to think about this situation here. If she gets ART, her dementia may or her cognitive impairment may improve some. She certainly will live longer. She is clearly not in any condition to be able to make decisions about most of her medical care, and so can she make decisions about whether or not she wants to take ART? I guess we might say she spent a long time not taking ART, so she probably doesn't want to take ART. But could he have HIV? She's not one of those people who's super-virally suppressed. And so is it okay to tell him? Do we have to ask about their sex life to see if he's at risk before we do? These are a lot of questions that people ask. And the reason they ask these questions is because they think it's not okay that HIV is somehow special, different than every other infection and every other condition that we have. This person who's responsible for making decisions for this patient can know everything, but we should probably just skip the HIV and we're going to make all sorts of other things about this. This is common in Illinois where we actually feel that the law allows us to tell a surrogate if they need to know. But there are other states with even stronger and more specific rules. I gave this talk in North Carolina where the rule is probably, it's maybe more strongly worded against telling surrogates about HIV, but still one would probably argue that you could do it if they needed to know. And when I spoke with the physicians there, the infectious diseases physicians there, they said, no way if my patient told me not to disclose, I wouldn't disclose even if they were going to be taking the person home and had to give them their HIV meds. I wouldn't tell them. This is a little tricky, right? Why are we treating HIV different? And is this what's resulting in these patients not wanting their loved ones and their surrogate decision makers to know about HIV when they're fine with them knowing about everything else? And what does that really mean for how we're proceeding as a society and going to get rid of HIV? So should her HIV really be shrouded in an additional layer of secrecy? And why is it different from all of her other medical conditions? And shouldn't we tell the husband about the potential benefits of getting ART since she's not really able to make decisions for herself? And we have no idea when she found out she had HIV and we have no idea what her cognitive impairment or non-cognitive impairment was when she originally made the decision to not get ART. Lastly, it's important to note that stigmatization undermines the public goals for HIV. Now that we know that people who are undetectable really can't transmit HIV like we thought they could. Perhaps there will be cases once in a while that are transmitted, but we actually now have there's a new recommendation that people who are the partners of a known positive and that known positive individual has had an undetectable viral load for six months, there's no need to give the negative partner PrEP. That's how strong our belief is. Even though many of us are still a little anxious about that, that is what the recommendations and the guidelines are. So if we're going to get everybody tested and we're now testing everybody in our emergency department except for if you see the sign that says we're going to test you for HIV so if you don't want to be tested you should probably tell us. It basically says something like that. Otherwise you get tested. And every single person that gets tested and tests positive gets phone calls and phone call and phone call over and over again. Even the negatives get called and we call the positives and we find them and we have an army of social workers, believe me I never had so many social workers on general medicine. So many social workers paid for by these grants and programs to eliminate HIV to find these people link them to care. It's an amazing program in the city of Chicago. It's happening in many cities across the country but if we continue to treat HIV as though it's some sort of stigma people like this patient's husband who may very well be positive to get tested could pass it on to someone else. So the USPSTF recommends screening for literally everyone and despite this the CDC reports and all these things that are happening that test and treat initiatives in many cities, large urban areas across the country CDC reports that the number of HIV infections have not continued to decline, they say, stabilized. These goals require that there needs to be and Cassandra Cassie Dr. Erler wrote this statement and I agree with it 100%. These goals require for there to be an open and ongoing public conversation about the HIV epidemic and we can't achieve that while healthcare professionals are contributing to HIV stigma. Absolutely every principle of ethics goes again except for that tiny little bit of maybe we should respect her desire not to tell about the HIV beneficence, non-maleficence, justice all of it argues for telling. So is autonomy really going to be king forever? That sounded really ominous, didn't it? It wasn't. It wasn't meant to be, sorry. Are there any questions or is it like 345? Yes, Ed. Yeah, I don't do anything halfway, you know. Exactly. No, we recommended telling. I think that HIV was the closest that the United States population came to like in the beginning we didn't know anything about it. We didn't know where it came from. You didn't know how it was transmitted. Everybody was terrified. It was like Ebola times a thousand and the fear and terror of that kind of pandemic is it lasts for apparently 50 years and hopefully I think we have to take active steps to mitigate that kind of fear. I mean we have to make bold moves in policy just like the first few surgeons who are like nope, I'm going to do surgery on the patients with HIV. We got to do it again. We got to say no, you know what, we're not treating this different. If I would tell the family member that this is neurosyphilis, I'm going to tell them it's HIV. Yes, Brian. Brian County University of Chicago. So how do you reconcile the exceptionalism of HIV that affords it all of that funding with the sort of exceptionalism of trying to destigmatize it? I've read articles that it doesn't have more funding than breast cancer. So I think every condition it gets to go out and try and make the case for its own funding and I'm not sure I agree with all of the funding decisions that are made and I think we can argue about whether or not it needs all those extra resources. Those are largely by the way centered in large urban communities where there's a huge epidemic of HIV in the rural south where there's really nothing happening for funding. So I would say I would redistribute that funding but I don't think they're the same thing. I think funding is great but I think the reason to spend the money on it is because you could end it. You can't get rid of breast cancer necessarily but you can get rid of HIV if you can stop it from spreading from person to person. So you can make a better or spending a bunch of money on it for a shorter period of time. That's what we make when we make grants anyway when we write grants that's what we send you. Anything else? Oh my God I finished early. Thanks.