HIV/AIDS: Myths vs. reality
Although HIV is not discussed as much as it was in the past, it’s a common issue that affects 1.2 million people in the United States. Unfortunately, misinformation surrounding HIV and AIDS has also persisted. Infectious disease expert Edwin Hayes, MD, addresses some common misconceptions.
Scott Webb: There are certain topics that don’t seem to be discussed as much as they were in the past, and HIV and AIDS are pretty high on that list. Whether it’s because of COVID being more top of mind or the fact that people generally live long healthy lives with HIV today, it’s hard to say. But HIV and AIDS are still present. And joining me today to discuss the symptoms, prevention and treatment medications and more is Dr. Edwin Hayes. He’s the infectious disease specialist with Prisma Health.
This is Flourish, a podcast brought to you by Prisma Health. I’m Scott Webb. Dr. Hayes, thanks so much for your time. We were just kind of talking off the air here a little bit, that seems like the further we get away from when we all first learned about HIV and AIDS, that folks don’t talk about it as much. But it’s still out there and we still need experts like you to help patients. So let’s do that. Let’s talk about this. What is HIV and how common is it today?
Dr. Edwin Hayes: I think it’s so important to talk about HIV because it is still such a common issue in the United States and around the world. You’re looking at almost 38 million people around the world that are dealing with this kind of ongoing pandemic of HIV. Within the United States, it’s estimated that there’s probably around 1.1 million people, a little bit more than that, ages 13 and older who have HIV. That’s in the United States and those are numbers based on 2019. So we gather the data over time and those are some of the most up to date numbers we have with the CDC.
The interesting thing about the commonality of HIV isn’t just the numbers, but also that amongst those numbers, it’s estimated that 158,000 people, so 13% of those people, have infections that have not been diagnosed. So you have a significant population within the United States who has HIV. And in that population, you have a significant fraction who don’t even know that they have HIV. So they’re not getting plugged into care and they’re potentially spreading it in their communities. So it’s common. It’s an ongoing issue. This isn’t something that’s disappeared because COVID shown up, even though a lot of people aren’t thinking about it maybe as much at the forefront at the moment.
HIV itself is a virus. It stands for human immunodeficiency virus, and that’s very specific to what it does. It’s a virus that directly attacks the immune system, usually the CD4 cells, which are some of the white blood cells that make up the immune system in the body, a very specific kind of white blood cell in the body, that protects us from many infections that we could get from various kinds of bacteria and fungus and other organisms that we face every day. And for most people, these organisms aren’t going to be an issue because of the functionality of their immune system. But HIV infiltrates these cells, kills these cells and takes away their ability to be protected from these other infections. And when enough of these cells are killed by the HIV infection, the virus that’s attacking these cells, the patient develops these other infections, and this is what we call AIDS, so an acquired immunodeficiency syndrome, which is created because of the HIV infection over time. This virus can be very subtle, very slow in terms of how it presents itself. And it may be months to years before anyone has any sense that they even have the infection. But during that period of time, they can still be spreading the virus from person to person.
Scott Webb: Yeah. You mentioned there about the presentation, what are the symptoms of HIV and is that one of the reasons why so many folks don’t know that they have it because the symptoms are so subtle? Can you give us a sense when we’ve been infected how long before like full-blown symptoms begin to present?
Dr. Edwin Hayes: So HIV, as I said, from initial contraction, that could be through sexual contact, usually without condoms. It could be through sharing needles and other blood exposures, potentially a needle stick in a hospital. The initial symptoms of HIV may show up in a matter of days to weeks where someone has a syndrome that might seem very similar to the flu or mono or even COVID where there’s a rash on the body, potentially a sore throat, sores in the mouth. They may have some diarrhea, discomfort, or even swelling of the lymph nodes in their neck and other parts of their body. This is very common for the early infection of HIV. And usually, it presents itself very similar to these other viral infections that we see.
After a period of days to weeks of these symptoms, oftentimes the HIV starts to calm down and get better controlled by the immune system. So this more acute retroviral presentation melts away and a patient may feel normal for many months to years. And during that time, they may have no symptoms whatsoever. But as time passes and the virus is quietly chipping away at their immune system, they may develop new symptoms often associated with the opportunistic infections. These are infections that people usually don’t get, but they develop an opportunity to become an infection because the immune system isn’t working. So these opportunistic infections start to grow and blossom in these people and that’s at the point where they have the immunodeficiency, they have AIDS from HIV. And again, that may happen months to years later. And it can start with things like skin conditions, rashes, itchy little focal lesions on the body. And it may be something as severe as stroke-like symptoms from an infection focally happening in the brain.
One of the most common presentations that we saw early in the HIV epidemic in the United States, when folks were just starting to figure out what HIV even was, before we even had a name for HIV, was we had a collection of individuals coming in who are getting progressively short of breath. They were having a very slow-moving pneumonia that seemed to progress over a period of weeks rather than days that you see with many regular bacterial pneumonias. And it was all related to the same organism called PJP. So this pneumocystic infection was causing this very slow pneumonia that’s very unusual to see in people who have a fully functioning immune system, and that can often be an early clue.
Another very common infection that was seen early on that we still see as an early clue is an overwhelming fungal infection in the mouth called thrush. Now, thrush can occur for many reasons in the body where there’s not good management of kind of the balance of organisms, either in the mouth or on the genitals, typically in the vagina, and many women may experience this as a yeast infection, especially after antibiotics kind of upset the balance in the vagina. But oftentimes, when you’re seeing an overwhelming amount of thrush or yeast infection, this kind of like white, cloudy material sitting on the tongue and down the back of the throat, this can also be one of the first signs we see that someone’s progressing from a more silent HIV infection to AIDS where they’re having these complicated issues.
So it can be varied. It can be significantly varied what kind of symptoms folks will have. But those are some of the most classic ones that we see. And some people, as I said, they may have HIV quietly for years.
Scott Webb: Yeah. And just kind of wondering, listening to you there, and you mentioned rashes a couple of times, and I just spoke with someone the other day about monkeypox and I know you specialize in HIV and AIDS, but wondering with the rashes that are associated with monkeypox in the lower half of people’s bodies generally, is this complicating things for folks? Are you running into patients, folks with questions about rashes thinking, “Well, is this monkeypox? Could this be HIV?” Is that sort of complicating things a bit?
Dr. Edwin Hayes: Absolutely, we are. And what we’ve seen with the monkeypox epidemic specifically is it seems to be intertwined mostly. Now, this isn’t for all cases, but it seems to be running very parallel with sexually transmitted infections. And there is a big concern that if you are worried about a case that has monkeypox, it’s very reasonable to make sure you’re not missing something else. You may have a rash that you assume is monkeypox and completely miss that rash was actually caused by HIV or syphilis or herpes. A lot of these infections can run in the same circles and they can get into people by the same behaviors. So it’s very important to be thinking about that, especially in the age of monkeypox, that if you’re worried about monkeypox in a patient, it’s very reasonable to also be looking for HIV, syphilis, herpes, and these other infections that can be transmitted.
Not all sores and lesions that we see coming into the ER that we worry about monkeypox turn out to be monkeypox. Oftentimes, it’s herpes or shingles. And certainly, by the way that we see monkeypox spread, it’s very reasonable to also test for things like HIV and syphilis.
Scott Webb: Yeah, that does seem reasonable, prudent, whatever the right word is. And wondering, you know, when we think about who’s at the greatest risk for HIV, who should be screened?
Dr. Edwin Hayes: This is really the crux of everything, I think. I mentioned that 13% of the people walking around with HIV don’t know they have it. The symptoms of HIV can be extremely subtle and maybe absent for years. All of those folks are walking around with the potential to spread HIV, to other people. And the way that you’re going to find that HIV is by testing them. And this is screening testing. So this is different from testing we do in someone who’s coming in with a specific complaint. This is anyone walking in off the street for any reason, we’re giving them a test for HIV. So that’s screening as opposed to testing to a particular problem. And really, those tests, that screening is how we’re going to get our fingers around this epidemic and quell HIV in the more general community.
The formal guidance by the USPSTF or the United States Preventative Services Task Force is that all individuals essentially who are between the ages of 15 and 65 should be getting screened for HIV infections. So you’re looking at teenagers and adults. There’s nothing more specific to it than that. So we’re not asking, “Are you sexually active?” We’re not asking, “Have you been engaging in shared needle use, IV drug abuse?” It is the general population. I think the easiest way to frame it is if you’re an adult, you should have had an HIV test at least once in your life. Every adult going in to see a doctor should be getting screened for HIV, should be getting an HIV test at least once. But the formal ages are from 15 to 65. And really, the more we’re aggressive about getting these numbers down about people who don’t know they have HIV, again 13% of people potentially in the United States, the more we’re aggressive about making people aware of this, the more we’re going to be able to treat them appropriately and prevent the spread of HIV to other individuals.
Scott Webb: Yeah. So let’s talk about treatment. It does seem to me anecdotally that folks are living longer with HIV than they did when it first hit, in my recollection being in the ’80s. But I want to have you sort of confirm that one way or the other, are folks living longer and what is the course of treatment today?
Dr. Edwin Hayes: Oh, dramatically. Dramatically different from what we’ve been seeing in the past to what we’re seeing today. When HIV first kind of showed its face and we were dealing with it more regularly in the community, we did not have the same medications that we have today. People early on in the epidemic would be put on multiple pills that had a variety of side effects. And sometimes folks would be very concerned about starting medicine because they were more worried about treatment and the side effects of treatment than they were about the infection itself. And that’s just simply not the case with the modern medications that we have today. We’ve been able to learn so much about the life cycle of HIV to more focally treat HIV with as little side effects as possible and compress the treatments we give, so that they’re much easier to take than they used to be, that as of today, folks walking around can take one pill a day and essentially suppress the HIV from being detectable in their blood. One pill a day, very well-tolerated, very rare for people to have significant major side effects where they have to stop the medication and they will suppress the HIV in the blood to the point that they will not progress to AIDS and they will not transmit HIV to other people. And we’ll talk a little bit more about that later, but I think that’s extremely important to note. These medications work well, and they’re very well-tolerated.
And what’s very exciting is the method of administering these medications is changing. Also, a lot of it seems to mirror what we see with birth control. So there’s injectable medications where someone potentially could get one shot every two months, and that’s enough to completely control their HIV infection, keep them undetectable and prevent them from progressing to AIDS. No pills, just one shot, and coming back to have serial shots every two months, and that’s enough to control HIV.
And there’s more medications on the horizon that potentially will last six months or even implantables that may last for years, which functionally really is similar to what you’d expect from a cure. You have an infection that’s suppressed to the point that it’s no longer causing damage or being transmittable to other people, and that’s where we’re headed next. But where we are is already pretty darn good. Folks who get HIV can take one pill a day and live a long happy life, comparable to anyone else walking around who doesn’t have HIV. No aids, no transmissibility to other people through sex.
Scott Webb: Just amazing. I’m just shaking my head. So when we think about the prevention of HIV, is there such a thing as a vaccine? Can we prevent contracting HIV through a vaccine or is there a medication to prevent? You know, you’ve talked about sort of managing and living with HIV, but can we prevent it?
Dr. Edwin Hayes: Oh, yeah. So there’s many, many ways that we can prevent people from getting HIV. I think just to kind of talk on the point that I just mentioned, when you are undetectable with the virus, so for folks who do have HIV infection, when you are undetectable and regularly on medication, so you can no longer detect the virus in the blood, you are unable to transmit HIV to another person through sex. They’ve done very large studies looking specifically at long-term partners where one partner had HIV, the other did not. No condom use, no PrEP use, just keeping the HIV well-controlled with one-pill-a-day medication. And none of those folks gave HIV to their long-term partner.
So we’ve made up the catchy title for this U equals U, undetectable equals untransmissable. If someone is getting treated well for HIV, they are not passing HIV to other people. So that is huge. That’s a really big bit of news that’s come out and shook up the ID community over the past couple of years, although there was suspicion for a long time. The data we have with thousands and thousands and thousands of sexual access studied showed zero transmission. So it’s very compelling.
Some of the more fundamental things that we’ve recommended forever for HIV to prevent HIV are barrier methods, particularly condoms. Condoms do work. They should be used correctly. And they should certainly be exchanged if there’s any concern about degradation. They should not be expired. They should not be left out in the sun or in a wallet or in a car for long periods of time. But condoms that are well-stored and used appropriately do help prevent not only HIV, but other STDs as we talked about earlier. And I think it’s very important to not forget some of those fundamentals for preventing HIV.
Now, the medications that we have don’t just work necessarily for treatment of HIV, they can also help with prevention. So some of these pills and some of these shots that we have presently can be taken by folks potentially one pill a day. If there is a concern that they’re a high risk individual for getting HIV, if they have a significant concern about getting HIV, they can take one pill a day of an adjusted HIV treatment medication regimen, that when combined with condoms after the fourth pill is decreasing the chances of HIV transmission to zero. So taking these adjusted HIV medications called Truvada, Descovy, these pills will actually decrease the ability of the virus to get a foothold and set up an infection in the individual. So they can actually take medication. PrEP, we call it, preexposure prophylaxis to help prevent this transmission. I think those are some of the most fundamental things that we can do today for helping prevent the spread of HIV. Treat people who have HIV by finding them, testing them. Once they’re positive, putting them on treatment and they will no longer spread HIV. And if someone is concerned about HIV transmission and don’t have HIV yet, using condoms to protect them, especially for penetrative sex acts throughout the act to avoid fluid exposures to mucosal membranes, and taking PrEP, which will probably be a one-pill-a-day treatment that’s going to help stop the virus from getting a foothold in their body. And there are also tests being done now for injectables that potentially could be taken once a month, maybe twice a month, that could have similar efficacy for protecting people from getting HIV.
So there’s barrier methods. There’s medications. These things do work. Of course, that’s more specifically looking at sexual exposure. Other transmission rates are definitely present for things like sharing needles. So, IV drug abuse remains a major issue across the United States and around the world. And certainly, sharing needles can increase the likelihood of getting HIV, hepatitis B and hepatitis C.
One thing that can mitigate that a bit on top of things like PrEP medications, which may offer some help, but have less data than for sexual transmission are things like using clean needles and needle exchanges, where individuals who do engage in these high risk behaviors, take away needles that potentially have old blood and HIV in them and replace them with fresh needles that are going to decrease the chances that they’re going to contract some kind of infection, HIV or hepatitis being some of the most concerning.
Another major population where we worry about HIV transmission, another major situation where we worry about HIV transmission is in pregnancy, which is part of why it’s so important that we screen pregnant women early in their pregnancy and potentially later as well, if they’re a high risk population, to make sure they don’t have HIV prior to delivering the baby.
In the modern era, there is no reason for a baby to contract HIV from their mother. When the mother is placed on medication and the baby is delivered through methods that decrease the transmission of HIV, those babies do not get HIV. The mother can be positive. She can get infected during the pregnancy and the baby can still leave the mother, be born and not contract HIV if appropriate measures are taken between HIV treatment and the process of delivery.
So there are multiple ways that HIV can spread and there’s a multitude, there’s like an armory of different things we’ve developed to help prevent that spread. And it all comes back to getting tested, to know what to do next.
Scott Webb: Yeah, you’re so right. I just want to kind of give you a chance as we wrap up here. When we think about maybe the right word is stigma, when we think about HIV and AIDS, just wondering, doctor, do people view HIV differently now? Do they discuss it differently? Do they view it differently? Are there still the same stigmas that there were, you know, in the ’80s? Maybe you can just kind of catch us up on that.
Dr. Edwin Hayes: So I think it’s very interesting. The sociocultural implications of HIV are significant. And we’ve certainly seen ripples all the way back from the ’80s and ’90s for how people view HIV. And I think, you know, that really can foster stigma, especially early on in the epidemic when people didn’t have a great understanding of what HIV was, it can be very easy to develop a sense of fear or judgment around it. But the truth of the matter is that HIV is something that could happen to anyone. There’s a multitude of ways that you could transmit HIV from person to person. And I think judgment and kind of associations with particular behaviors and lifestyles is outdated. And I think that all of us should take a personal responsibility to get tested and know for ourselves kind of where we stand in terms of having HIV.
I think one of the aspects with stigma for HIV that’s been huge is getting a better understanding of how HIV is transmitted. And early on when, it was less clear how transmission worked, people would be very afraid to even touch someone who had HIV. I know there was this very big famous moment when Princess Diana touched an individual who is suffering from AIDS and it was kind of publicly viewed. And I think that really establishes something that we all need to establish is that we can still interact with people who have HIV. And that the transmission that we see is getting harder and harder to be accomplished, especially for folks who are well-treated. We shouldn’t be afraid of HIV. We should learn to deal with it with compassion and intention.
HIV does not spread through casual touch. It’s not spreading through kissing. It’s not spreading through sharing a pool with someone. It’s not spreading through mosquitoes, and it’s not spreading through petting dogs and cats. HIV requires very specific methods of transmission. And for individuals who are well-controlled and well-treated, they are not spreading HIV through things like sexual contact. So people who have HIV can live a long, healthy life, just like anyone walking around, who doesn’t have HIV, and they can engage in many of the same behaviors of daily life, recreation and physical intimacy that other people can without a concern of transmitting HIV to the people around them, and especially people they care about.
So I think the more people understand that they don’t have to be afraid of HIV, we just need to get smart about how to deal with it, that will help undermine some of the stigma we’re seeing. And you do see that now. You do see opinions changing on this. People are much more comfortable. There’s much less associated stigma, especially generationally with younger individuals with HIV infection and maybe a little bit more comfort and confidence with getting tested and knowing their status because they know that there’s something they can do with those results and there are people who are going to take care of this in a way that’s reasonable and logical and has good outcomes for them and the people around them.
It can be harder with older generations who are still holding on to the HIV of the past that they had seen where people would get sick, it was a death sentence, and they’d kind of waste away and struggle. That is not the HIV of today. And the more that becomes normalized and we put a face to what HIV really is, which is a virus that living people, just like anyone else walking down the street are living with and doing okay and not creating risks or dangers to the people around them. The more we can normalize that and have people understand that, I think we’ll really see us continue to move to a place where people are comfortable with dealing with HIV. And ultimately, that’s going to lead to the end of the epidemic.
Scott Webb: Yeah. And it’s so encouraging to speak with you today to think about where we were, just how in the dark we were and how uneducated people were and fearful and stigma and all of that, to think about where we are today is really amazing. So thank you so much for your time today and you stay well.
Dr. Edwin Hayes: You as well. Thank you so much. Really appreciate it.
Scott Webb: For more information and other podcasts just like this one, head on over to PrismaHealth.org/Flourish. This has been Flourish, a podcast brought to you by Prisma Health. I’m Scott Webb. Stay well.Read More
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