When someone is diagnosed with HIV, what kind of care do they need? What can they expect from their first visit to the UNC ID Clinic? Dr. Claire Farel answers these questions and many more in this podcast about getting medical care for HIV. Dr. Farel is an Assistant Professor of Medicine in the Division of Infectious Diseases and is Medical Director of the UNC Infectious Diseases Clinic.
“The message that we try to get across to our patients is people can live the lives they want to live. People can have strong partnerships, people can have normal sexual relationships with people they want to have sex with, and not worry about transmission if they take their HIV medicine correctly.”
– Dr. Claire Farel
Specific Topics Covered:
- Starting Care for HIV
- A Typical Scheduled Visit at the UNC ID Clinic
- Common Questions about Treatment and Transmission
- ID Clinic as a Safe Space
- General Health Maintenance
- HIV and Pregnancy
- What Brings Dr. Farel Hope in her Job
Ron Falk: Hello, and welcome to the Chair’s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients where we talk about HIV, and today we’ll talk about ways that a person who has HIV can stay as healthy as possible. We welcome Dr. Claire Farel, who is an Assistant Professor of Medicine in our Division of Infectious Diseases and is Medical Director of the UNC Infectious Diseases Clinic. Welcome, Dr. Farel.
Farel: Thank you.
Starting Care for HIV
Falk: Dr. Farel, you see patients for many reasons at the UNC Infectious Diseases Clinic–we know it affectionately as the ID Clinic. Many patients you see there have HIV/AIDS, and that’s what we’ll be talking about today. From a patient’s perspective, when they come to the clinic for the first time, what do you think they already know? How much are they aware of what’s going on? I bet there are patients who are completely in the know, and patients for whom all of this is a blindside.
Farel: Certainly. We see a range of patients who are initiating their HIV care in our clinic. Sometimes, they have been in the hospital, and they find out they are HIV positive in the hospital, so they’re coming to our clinic after being very sick. Sometimes they have a routine HIV test at one of our wonderful community spots that offer HIV testing, at a health department, through their school. All they know is that they have a positive test, and they’re very frightened. Sometimes we see folks who are transferring their care here from another location—maybe they’ve moved here or their insurance has changed, and so forth. We really have a mixture of different perspectives, but what we always try to do is offer the same amount of information, so that we can give everybody all of the tools that they need to be successful with treatment and engagement in care.
Falk: Let’s talk about the person for whom this is a blindside: first time getting a positive test, I can imagine there are issues of, “Is this test correct? Where did I get it from?” How do you figure all of that out and help the patient go through that thinking process?
Farel: Our clinic has been doing this for a long time, and we’re lucky that we have a really wonderful group of patients who help us learn how to do our job in the best way possible. One of the really important contributions to our clinic is something called the Community Advisory Board. We have a group of patients who tell us about their experiences to help us make things better for each successive group of patients.
What we try to do is have patients come to our clinic for a visit before they meet their doctor, nurse practitioner, or PA. We have patients come, they meet our social workers, they talk about their lives, we talk about what they might need, we give them some general information about HIV and we talk about how we can get them medicine. Right now, we recommend that everyone who is HIV positive be on medicine. That is critical. It ensures that they have a long and healthy life, and there’s no reason to wait.
Falk: So, the long and healthy life. Tell me about that. There are wonderful examples of that that are well known to lots of people. What does “long and healthy life” mean?
Farel: We expect that someone with HIV, if they remain on therapy, is going to live as long as they’re meant to live, perhaps even longer because they’re going to receive regular medical care, which not everyone in our state or country has access to.
Falk: Why then, with that wonderful news, why do you think people wait? Why don’t they come and see you soon, or immediately, sometimes?
Farel: It’s frightening to go see a new doctor, no matter what your medical problem is. A lot of people are afraid to come to our clinic. They don’t want to hear bad news. They’re afraid to say that they don’t have the money to pay for their care or their medicine. Maybe they’re afraid that they’ll see someone they know or someone will see them entering the clinic. I’m glad you brought up that we affectionately call it the ID Clinic, because that’s what all of our signs say. They say “ID Clinic.” They don’t say “Infectious Diseases Clinic,” they don’t say “HIV Clinic.” As you also mentioned, we treat a lot of other conditions besides HIV, so we like to tell patients that their privacy is maintained.
Falk: What happens if you can’t pay? What happens if a patient says, “Oh my goodness, I need these drugs, but I have no money”?
Farel: We are really lucky that we have ways to make sure everybody can get medication regardless of their ability to pay. We have the ability to pay for medication for people who don’t have enough money, or don’t have health insurance, through federal- and state-administered grants, assistance programs through pharmaceutical companies. UNC has a generous pharmacy assistance program that we utilize, and UNC itself has options to provide charity care, or free care for those who don’t have the ability to pay for their care.
Falk: What would you suggest that a patient bring with them to their first appointment with you, other than themselves and hopefully some companion who can be an advocate?
Farel: That’s such a great question. So that we can provide the care that we want to provide in our clinic, so that we can pay for the staff who help them to be successful in their care, we recommend that patients bring a pay stub or a tax return, or anything that shows something about their financial situation.
It’s very helpful also if patients bring medications, vitamins, even herbal supplements that they’re taking, so we can look at all of those and help to shape the right treatment plan for the patient. We like to know everything about the person so we can help them most effectively.
Falk: Do you advise them to bring a companion, a friend, somebody else to listen to all of their recommendations, or do you think they should come on their own?
Farel: Everyone’s different. One of the things that I tell my patients is, “If we can get you on therapy, we’re going to keep you healthy, and we’re going to keep you looking good and looking strong, so nobody’s going to ask if you’re sick.” It’s always easier to go through this with someone else and with a supportive family member, friend, partner, but not everyone has that luxury. We want to try to provide enough support for people that they don’t have to worry about who they might bring to the appointment.
Falk: Let’s come back to this opportunity of really learning from patients, your Community Advisory Board. What have they taught you? What have they taught you about these initial visits?
Farel: One of the things that they have helped us see is the way our spaces in our clinic look to the patient. I think everybody’s had the experience of having a particularly frightening moment in their life, a stressful medical visit, a time when you received bad news, and you remember the strangest things. You notice details on the wall, you notice the shoes the doctor was wearing. They help us to see the things that we don’t see, because we’re there every day. They help us to see whether or not the posters on the wall have people who look like them. They help us to see whether we have reading material for all types of patients, whether our chairs are comfortable for people of all different sizes, and whether we give patients a sense of control over their own diagnosis.
Falk: We had a wonderful Grand Rounds this last week from a marketing professor at North Carolina State who shared the same kinds of observations. Dr. Stacy Wooten pointed out that the signs on the door, the magazines that were in the magazine rack, really shaped how patients felt about their visit. So, I’m sure those are just wonderful insights.
A Typical Scheduled Visit at the UNC ID Clinic
Falk: Walk me through what actually happens to a patient when they come to clinic. You’ve said that they see a social worker, they may see other members at your clinic. Walk me through what happens—tests, x-rays, other kinds of folks seeing them?
Farel: We have a couple of different types of visits for our patients. We have an urgent care or walk-in clinic, which is for patients who have a specific concern, like a sore throat, a cough. What I’m going to describe is a typical scheduled visit.
When people come to our clinic, if they’re healthy, it may be once every six months. If we have them on therapy, they’ve been on therapy for a while, and there’s nothing in particular bothering them. A scheduled visit would take place twice a year. They’ll be asked for their financial information, so our clinic has a huge number of staff, most of which are paid for through federal and state level grants that are meant to provide comprehensive care for folks with HIV. People who don’t have health insurance or don’t have a lot of income, and people who may have a steady income and health insurance, are all welcome to use these services in our clinic, but we need to demonstrate what the range of patient income is in order to have everybody qualify to use them and to make sure that we can keep offering them.
After people check in, they may be asked to fill out a survey on a tablet. This helps us get information about whether or not people are struggling with feelings of depression, anxiety, or even having thoughts of hurting themselves, or are struggling with substance use. We found that this is a private way for our patients to express things that sometimes don’t come up until the end of a visit or even aren’t addressed in the course of an entire visit.
Patients also might be approached by someone we call a “research screener.” We’re lucky to have a huge range of research studies offered at UNC, many of which represent cutting-edge therapies, or very sophisticated considerations of therapies that we already use, but want to continue to administer in better ways. We always offer our patients a chance to participate in research studies, but it’s never an obligation, and refusing won’t affect their care in our clinic.
The patient will see a nurse, that’s a pretty typical interaction where they’re weighed, they’re asked about smoking, they’re asked about what other medicines they’re taking, and they’re shown back to a room. Often times, they’ll see their provider soon after that to conduct a regular medical visit, but sometimes in the meantime our pharmacist may come in to confirm that the patient would like to continue medications by mail. Sometimes a social worker will come in to check in. We have an amazing array of folks who are in our clinic, and most of our patients get to know everyone’s face pretty well.
Falk: It’s really a multidisciplinary approach.
Farel: It is exactly a multidisciplinary approach. After the medical visit, if the patient has not had labs recently, their provider will explain the labs that are going to be obtained and show them where to go to get their blood drawn. Before that, we offer our patients a chance to have STD testing, or as we now call it, STI, or sexually transmitted infection. One of the neat things we’re doing in our clinic is allowing patients the opportunity to test themselves. So instead of having to describe to your provider all of the ways that you have sex, we let patients determine this for themselves. We have posters that show you how to do this, and instructions for how to swab your throat if you have oral sex, swab your backside if you have anal sex, and pee in a cup for men and women. A lot of our patients find this to be empowering. We recommend STI testing as a part of routine health care, and our patients can take some of this into their own hands.
Common Questions about Treatment & Transmission
Falk: We’re going to talk later on in-depth about treatment of HIV with one of your colleagues, Joe Eron, so discussing treatment is an important part of any appointment. What is the usual question that patients ask you about, things that concern them about first treatments? Are there worries that they’re going to react to the medicines? All of us who take medicines worry about side effects. What do they ask?
Farel: Well, it’s very hard to change public perception, and there are a lot of myths about HIV that float around. There are also a lot of somewhat historic understandings of what HIV treatment means, and a lot of those things are no longer true. We have a large number of really well-tolerated treatment regimens for HIV. Any treatment regimen for HIV has to include more than one drug, but often times these can be combined into one pill. A lot of patients take one pill once a day and we’re commonly asked the question of, Will I have to take handfuls of pills several times a day?, or whether they’re going to make me so sick that I’ll have to stay in bed or can’t work, or my family will know that I’m taking them? That’s just not the case anymore.
Falk: This institution has pioneered the concept that uninfected partners of individuals who have HIV should also be treated, or at least that conversation needs to be had. So, let’s talk about the individual’s partner. What advice do you tell the patient if their partner is not present, and what advice do you tell a partner if they are in the room?
Farel: That is the number one piece of amazing news in the HIV world from 2017 and the last couple of years. This is an incredibly exciting development in our field. There’s a campaign underway by a group called the Prevention Access Campaign, and their message is, “Undetectable Equals Untransmissable.” The U=U Campaign. This is a campaign whose central message is, that if a person is on HIV therapy, and if they are taking their medicine so that the virus is not seen in their blood—so when we draw a tube of blood, there’s no virus that we can find, that person is not going to pass the virus on to their partner sexually who is HIV negative.
This is a message that has been proven time and time again, by several large studies, the largest of which was led by my boss, Dr. Mike Cohen at UNC, that showed that people in this undetectable state— and when they come to the clinic we talk a lot about this— do not pass the virus on to other people. This means also that people don’t need to worry about some of the things that are in the common perception of HIV. If you’re not going to pass the virus on sexually, you’re not going to pass the virus on by sharing a drinking glass, by sleeping on the same sheets, by sharing the same toilet seat…The message that we try to get across to our patients is people can live the lives they want to live. People can have strong partnerships, people can have normal sexual relationships with people they want to have sex with, and not worry about transmission if they take their HIV medicine correctly.
Falk: That means then that the partner does not need to be treated.
Farel: The partner does not need to be treated if they’re in a monogamous relationship with our virally suppressed patient. Now, there are a lot of considerations that we recommend they talk to their doctor about. One of the things that we recommend is that people have routine testing for infections like chlamydia, gonorrhea, syphilis, and other infections that we can make sure both partners are healthy before we give them this advice. The other important thing to remember is that not everybody sticks with just one partner. In those situations, it’s really important for people who are HIV negative to know their resources and protect themselves with medications such as PrEP, or Pre Exposure Prophylaxis, for HIV.
One of the most important things for our patients to understand is that scientifically, we can never say that there is zero risk, but we know from very large population studies, thousands and thousands of people who are in partnerships with one positive person and one negative person did not transmit the virus when the positive person was on effective therapy for HIV and was undetectable.
Falk: And took their medicine regularly and didn’t miss doses.
Falk: That’s compliance with the treatment that provides that layer of certainty.
Farel: Yes. One of the things that our clinic tries to pinpoint are the things that help people stay on therapy, and that’s something we try to support people in doing. We don’t just give you a bottle of pills and tell you to take them and come back in six months. One of the points of that early visit is to really get to know you and find out what makes it hard, what makes it easy for people to take these medicines.
ID Clinic as a Safe Space
Falk: How do you help people with the emotional rollercoaster that people can be on? The whole discovery, if this is the first time that they have even talked about HIV, therapy, concerns about their partner, reactions from other family members or from members of the community who are not as well informed…How do you help the person stay reasonably sane?
Farel: We try to make our clinic a safe space to ask questions they have and to voice any worries that they have. It is devastating to be told that you have any diagnosis, and this one is particularly fraught. This is something that people get through bad luck, this is a disease of stigma, and shame, and secrecy, and sometimes when people are given this news, they are not surprised, and sometimes they are shocked. This range is something that our clinic has built a lot of resources to try to deal with and help patients through.
We find that our patients oftentimes will feel so worried or so flustered on their first visit, that they don’t remember half of what they’re told, so we try to structure access to our clinic to involve an initial meeting with our social workers, our nurses, and our financial counselors. That gives us a chance to draw some blood labs, provide some information, and then when they come back to meet with their provider, maybe they’re absorbing some of this knowledge and they’ve had a chance to think of some questions they might have.
Falk: It’s a long-term relationship for the same group of people, it helps with that rollercoaster. I think most patients, regardless of what kind of disease they have, or even if it’s a well physical, only are able to retain a tiny proportion of what any provider actually tells them. It’s amazing as to our own inabilities to effectively transmit all of the information that we want to be able to provide.
Farel: It’s really tricky in our particular clinic as well, because a lot of people are understandably reluctant to take brochures or printed materials about HIV out of our clinic. We try to provide general information that people can arm themselves with, or if they have access to the Internet, we can provide web sites we recommend that are reliable sources of information.
General Health Maintenance
Falk: What else do you tell patients in terms of just general health maintenance? What can they do and what shouldn’t they do?
Farel: We tell people first and foremost that they must quit smoking and using tobacco products. Obviously, we all know at this point in the medical field that these are associated with all kinds of problems. One of the things we see with HIV is an accelerated rate of cancers that are sometimes downstream effects of exposure to tobacco products. That combination with being HIV positive is so dangerous that we really try to have our patients quit smoking. We try to support them through stopping use of other substances, if they use drugs not prescribed them—recreational drugs, if they drink alcohol heavily, and we also try to help them come up with a plan to be healthy in the longer term. If they’re going to be receiving care in our clinic, that means they have access to preventive health care and primary health care. It’s our job to make sure that they maintain a healthy weight, a healthy blood pressure, that they’re getting good nutrition, that they’re getting routine well-woman or well-man care, and that they get all of the preventive health benefits that all of us should be getting.
Falk: With respect to exercise, can they exercise as much as they want?
Falk: So, in fact what you’re saying is, Stop smoking, get preventive care, enjoy a normal life, and ask all the questions you need to ask.
HIV and Pregnancy
Falk: What do you tell people, either males or females, about pregnancy? What do you tell a female who wants to get pregnant, what do you tell a female who is pregnant, and what do you caution a male about?
Farel: One of the common misconceptions that we found a lot of our patients share with us, is that people with HIV can’t get pregnant and have babies, and this is certainly not the case. One of the messages that we’re trying to deliver to our patients is that you can plan when you have children. A lot of people feel like they need to do it right away while they’re still healthy, or that because they’re HIV positive they may never find somebody who wants to be with them and raise a child, so they need to seize the first opportunity they have to have a child. We want to partner with our patients in planning for when they have kids. We want to make sure that they’re healthy, that their viral load is undetectable, that they’re able to manage other parts of their lives, and we try to give our patients the tools to do that. We have a wonderful team that helps our pregnant HIV positive women have healthy babies.
Falk: Tell me about the maternal or mom-to-fetus transmission of the virus.
Farel: This is not something that we worry about in the context of a woman who is taking her HIV medicines and maintains an undetectable viral load in her blood. Because the maternal circulation is linked to the fetal circulation, of course we feel that we can help a mom stay healthy and maintain a zero risk of transmitting HIV to her baby if she remains in care with us.
Falk: Is the risk zero for a baby born from an HIV-positive mother, or is the risk higher?
Farel: The risk is zero if the mother is on medication and is viralogically suppressed, or undetectable, as we like to say.
Falk: How often do you recommend somebody getting tested to make sure that their HIV or are virally undetectable?
Farel: It depends on the patient. During pregnancy, we test more frequently just because so much is at stake, depending on where she starts in her pregnancy. If she starts her pregnancy undetectable, we may check every two or three months. Sometimes, if a woman is diagnosed with HIV and finds out she’s pregnant at the same time, we may be checking very frequently to make sure that we know when the viral load is undetectable.
Falk: Does that increase the chances that the baby will be born HIV negative?
Farel: Having an undetectable viral load later in pregnancy is most important for avoiding HIV transmission to the baby. We try to really focus at the end of pregnancy, which coincides with when most women need to have more frequent visits to her obstetrician anyway, to make sure she is undetectable around the time of delivery.
Falk: Is that the last trimester, the last month?
Farel: The last trimester. We see women throughout the pregnancy, though to make sure the outcomes for the baby are as good as possible.
Falk: What do you advise to men, then, who are concerned about this whole issue of transmission?
Farel: This is something that has to be worked out individually with a man and his partner if they desire a pregnancy. One of the things that we advise is a careful screening for both partners to make sure that we can say that this is a healthy situation to create a baby, regardless of HIV. There are a lot of other things that we need to consider. In that context, we try to make sure that we can say that having sex for the purpose of getting a woman pregnant is a safe activity for both people.
What Brings Dr. Farel Hope in her Job
Falk: Claire, what do you like best about what you do?
Farel: Gosh. I love seeing people in good health who are enjoying their lives and doing what they’re meant to do. It gives me a huge amount of hope to see our patients going back to school, having grandchildren, getting organ transplantation, having meaningful relationships with other people, and feeling comfortable in their skin. So many people when they first come to our clinic are so dismayed and so weighed down by this diagnosis that it’s a real joy to see people living the lives that I think they deserve to live, and that we all think they deserve to live.
Falk: It’s just an astonishing statement to be able to make. Not all that long ago one couldn’t have even thought the thoughts you just espoused. That’s just a remarkable rate of progress to be able to tell somebody that you’re going to do fine, and oh by the way, I’m enjoying what I’m doing, because you’re going to live a normal life! That’s remarkable.
Farel: I agree. I love teaching patients about all of the hopeful things that they deserve. Another really fantastic thing about my job is being able to provide education to patients and to other people. We’re so lucky at UNC that we have learners at all stages of learning at different times, and they teach us a lot as well, and it’s very exciting to be able to spread the message that a diagnosis of HIV doesn’t mean the end of somebody’s life. We can use people who have all different types of training to enrich the lives of our patients and give them a lot of hope.
Falk: Thank you, Dr. Farel.
Farel: Thank you.
Falk: Thanks so much to our listeners for tuning in. Stay tuned for next time, where we’ll talk with Dr. Joe Eron about HIV treatment. If you enjoy this series, you can subscribe to the Chair’s Corner on iTunes or like the UNC Department of Medicine on FaceBook. Thanks so much.
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