In Costa Rica, we lack complete and correct information about HIV. That was one of our biggest takeaways from our month of covering this topic at El Colectivo 506. So we’re ending “HIV @40”, our edition to mark four decades of the reported presence of the human immunodeficiency virus in Costa Rica, with a conversation with an expert whose voice has been present throughout our stories and podcasts this month.
David Reyna Barrón is a Costa Rican specialist in palliative care; he has a master’s degree in HIV studies, and works in the interdisciplinary HIV clinic at Hospital México in San José. He is also founder of the Care with Love Foundation. He powers the foundation by donating his time to offer lectures and resources on HIV and palliative care, with the goal of raising funds to build a hospice.
As we have reported throughout the month, the virus is spread through contact with certain bodily fluids of a person with HIV, and can be transferred through unprotected sex, the sharing of injection drug equipment, blood transfusions, or childbirth. The virus attacks the CD4 cells of the immune system that fight infections. Without treatment, a person with HIV can develop Acquired Immunodeficiency Syndrome (AIDS), and if that person without treatment, his or her life expectancy will be approximately three years. However, HIV medications prevent the virus from making copies of itself, thus allowing CD4 levels to increase once again.
With treatment, people with HIV can reach levels of viral load that are undetectable with standard laboratory equipment. With an undetectable viral load, people with HIV will not even transmit the virus to their partners through sex. And with proper treatment, they will never develop AIDS.
But what exactly marks the boundary between HIV and AIDS? What is life like for a person with undetectable HIV? What should we do to become better informed and reduce the stigma around this condition?
Diego Bosque and Mónica Quesada talked with the doctor about all these questions at his office in Curridabat. Excerpts follow, edited for clarity and brevity.
Can the HIV virus cause death?
What leads to death is the opportunistic infection that can take place when that person is untreated. Without treatment, you already have very low levels of CD4 lymphocytes—which are our main defenses—so that is where viral, bacterial, fungal or tumor infections take hold. That’s what affects a person’s health, and can even kill the person.
What’s the difference between HIV and AIDS?
AIDS is an acronym that we try not to use, because it carries a lot of stigma. We try to talk about “advanced HIV,” which is also much easier for people to understand.
People with advanced HIV, or AIDS as we used to say, are people in whom the infection has already led to a highly impaired immune response. In addition, they may also have opportunistic infections or some AIDS-defining disease, to use the term we used to use. A person with HIV infection may not even have symptoms.
At what point does a person have advanced HIV?
We define advanced HIV using three aspects. Two are from the laboratory. First, there’s the level of CD4 lymphocytes, our immunological defense. The normal [level] is above 500 or 600. If you’re below 200, that’s a risk factor to define whether the person has advanced HIV.
The second is the quality of those lymphocytes, which is defined with a percentage: a percentage less than 14% also tells us that that person has reached [an advanced] stage.
Third, there are the clinical characteristics: significant weight loss, more than 10% of body weight in six months; a person with chronic diarrhea, chronic fevers, night sweats; and obviously if they have a diagnosis of any opportunistic infection. For example, disseminated tuberculosis, histoplasmosis, with tumors [and other diseases] can define advanced HIV, or AIDS. They are diseases that only appear and do damage when CD4 levels are so depleted, because that person can no longer defend themselves. That’s why they are called opportunists.
How long does it take for a person who stops treatment to develop advanced HIV?
This depends on many things. It depends on your clinical status, and even before that, it depends on your age, whether you have other diseases, other co-morbidities: if you are diabetic, if you are obese, if you have asthma, or any heart disease.
It also depends on how high your viral load reached, because that is a prognostic [data point] that we take into account. We know that the moment that person stops treatment, for whatever reason, in a reasonable amount of time they will return to that high level they once had.
What is the treatment like? What do patients have to take or do?
It’s very different now from where we started. I started working in this area in 2008, so I had some experience with the old retrovirals, the initial ones, which were much more toxic. I remember that we had eight pills in the morning, eight at noon and eight at night. Imagine! Twenty-four retroviral pills a day. That alone was a reason not to stick to the treatment. Despite this, many did very well,thank God,
The adverse effects were much more evident than those that occur with today’s medications. Today there are one-a-day tablets that have the same cocktail of three medications in a single tablet, and adverse effects are practically nil. Yes, there are cases where, during the first couple of weeks while the body adapts, they feel some dizziness, have nightmares or nausea, but it’s very mild. And after that, there are no further effects. As long as they remain adherent and do not stop the treatment, they will continue without any type of effects, and it is one pill a day, so it is extremely different from the reality of several years ago.
What resources do Costa Rica’s institutions have on hand to help ensure that patients adhere to the treatment?
There is an interdisciplinary team—for example, where I work [at Hospital México]. (Read more about Costa Rica’s interdisciplinary teams here.) There are doctors, nurses, pharmacists, a psychiatrist, and a social worker. We all try to collaborate so that this person has very good adherence.
And why? Because there are many factors that can complicate treatment adherence. There are medications that you need to take on a full stomach so that it is better absorbed, and it turns out that there are patients—I have one now, for example—who don’t have a way to eat. [My patient] eats in a school cafeteria where he gets special permission, where he studies, and unfortunately on Saturdays and Sundays he cannot. Is closed. So, that compromises adherence to treatment, and obviously viral loads begin to rise.
There are work schedule situations too: sometimes there are people who work nights one week, then mornings, then in the afternoon. There are some medications that are better to take before going to sleep, because it may produce a little dizziness, so it’s best to take it and just go to sleep. But with those schedule changes, this can be hard.
Other [very important factor] is addiction to alcohol and drugs. That’s the largest single reason why patients do very poorly with this disease. Regularly, the vast majority of our patients who reach advanced stages are people who have addiction problems.
There are also people who do not accept their diagnosis and do not follow up, or try to avoid it, or throw a tantrum when they have to take their medications, or take them incorrectly, or vomit after taking them. They really have a hard time accepting their reality.
So with our interdisciplinary team, we try to help them in different areas. At the time of starting treatment, they receive basic education. The medication it contains is explained very well, the possible effects it could have, what they could do if one or another effect appears. And they are also given a number so they can consult [their questions].
What does it mean to achieve an undetectable viral load?
A person who is diagnosed early and quickly, accesses health services, and controls their disease through treatment, can bring that viral load to [the category of] undetectable, which is the goal of treatment. That way, your body begins to regenerate its immune system again.
The viral load is what tells us the amount of virus that person has in their blood. Let’s say that the person shows up with 80,000 viruses in the report: many people have trouble understanding what that means, and I explain to them that that can be translated into 80,000 viruses per drop of blood. It is easier for people imagine that reality.
A high viral load is 100,000 copies per ml or more. With that viral load, it is easier to transmit the infection.
With treatment, this viral load quickly drops. No later than six months after starting the retrovirals, it will be undetectable. Undetectable means less than 50 copies per ml, or, as I say, less than 50 viruses per drop of blood.
In this undetectable condition, what quality of life can a person achieve?
The best. They can have a long life, and an excellent quality of life. They can even have a family without infecting the other person, and obviously without bringing sick children into the world.
This is a huge change. In the past, with women who were infected, the thing that made them suffer the most was the idea that they could no longer be mothers, because if they brought a child into the world, the child would be sick. They preferred to be childless.
Is there a point at which the viral load can no longer be lowered?
Yes. We can’t get to zero. I wish we could. This is something important that I would like to emphasize. If a person is undetectable today, and tomorrow she stops taking treatment—because it ran out, because she couldn’t pick it up, for whatever reason—starting tomorrow, the viral load will increase.
That is very important, because I have had patients where, the first time I was able to tell them at an appointment that they were undetectable, they did not return. They thought they were already cured, and it is important to be clear about that. There’s no cure. What does exist is a way to control the disease very well.
People with HIV still face social judgment. When they are going to have a partner, the moment they communicate this news, the person might flee. For a patient with undetectable HIV, are the consequences more emotional than physical?
Exactly. The most difficult thing is the emotional part, mostly psychosocial. When people are diagnosed, as a result of this stigma that exists worldwide, people continue to think that this is associated with death. They think that the condition is associated with “dirty sex,” and that is completely untrue.
The only thing a person with HIV has done is to have high-risk relations. That’s how the person bought a lottery ticket that ended up winning. What are high-risk relations? Sex without a condom. We can ask all the people who are walking along the sidewalk outside, “Have you ever had a relationship without a condom?” [The answer will be] that absolutely all of us have done it, and yet we brag and start pointing fingers at people when they are diagnosed.
Stigma—the lack of knowledge that people have about it—is the main thing that affects them. It is the fear of rejection. First, the slightest rejection from their family hurts the most. The next rejection they face is from a potential partner.
When I have the chance to talk to them, first I tell them: let’s try to understand that your condition does not have to define your worth as a human being. Second, when you find a special person with whom you can have a possible long-term relationship, you should first aim for friendship for a long time, or for a relationship without sex. I know that this is very difficult these days, but the main objective of this is to get to know the person, their values and life motivations.
That way, when you want to take the second step towards intimacy, it will be much easier, because you already know what they are like as people. You know that kind, hard-working, transparent, faithful person. All the values you have discovered with that relationship. Obviously when you are going to be honest, you are going to put your diagnosis on one side of the scale—but you have already taken care, in all that previous time, to fill the other side of the scale with who you are. Who is this human being that is in front of you? That is the most valuable thing.
I regularly tell them, “Let’s work on self-esteem.” Oftentimes, they don’t even accept themselves. If you don’t accept yourself, how can you ask others to accept you?
Is it common, in your experience, for patients who have a diagnosis to hide their condition and infect—even on purpose—another person?
Yes. I think that it is commonplace, mainly due to the fear of rejection. They prefer to avoid exposing themselves. But the vast majority at least use condoms and use precautions. That’s what you prepare them for.
In addition, according to the law, if you can prove that a person infected you and did not tell you that they had the virus, that person can go to jail.
The thing is that no one exposes themselves to studies, to being singled out. They prefer to keep quiet and [say] “I don’t want to expose myself, put myself on display.”
Even today, people sometimes think that this is “a homosexual disease” or “a prostitutes’ disease.” Why do you think this continues to happen?
All you need to buy your ticket and win this draw is to have a high-risk relationship, and it is something that we have all done at some point. It’s not that this is focused on gay people, trans people, or prostitutes. That’s how this epidemic started, but today we find 18-year-old girls who became pregnant and infected with their first sexual relationship. That girl was not a prostitute. She wasn’t “easy.” She was a teenager enjoying her sexuality.
Older adults—that is another population that is made invisible. Many people think that older adults no longer have sex. That’s wrong. They do have sex, and they also take risks.
Costa Rica has seen an increase in the number of infections, especially among young men. What factors could explain this increase?
I believe that young men have now lost their fear of the disease. They see that their peers with the diagnosis take the treatment and seem fine: they look energetic, they continue to party. And then they say, “It’s no big deal.” But when they get diagnosed, they see other realities, the psychosocial part that they did not take into account.
With the diagnosis, they begin to experience the possible rejection of a future partner, the possible rejection of their own families, hiding the diagnosis from a boss—hiding the pills because “if others see them, they’ll know I’m taking retrovirals.” So many of them prefer not to take the treatment, or take it at other times when they’re alone. So adherence to the treatment is at risk.
Once they are inside the rodeo, as they say, they realize that it’s not what they thought.
The biological, virological, immunological part is excellent, very easy [to control]. We take them to an undetectable level. But the psychosocial part is what still makes this population suffer.
What would you say to a person who has just received this diagnosis, and to their family?
First: understand that this diagnosis does not define your worth as a human being. That is very important. The vast majority with the diagnosis feel like second-class people.
The next thing is to educate yourself. I believe that education changes absolutely everything. An educated person is a person who has a mental map regarding any topic. She is more objective and much more positive towards herself.
Do you think that the institutions in charge of health, such as the Caja or the Ministry of Health, have failed to carry out sufficient campaigns on prevention, diagnosis, and treatment?
I believe that information is given, but for the people who want to receive it. Many people hear “HIV” and change the channel, or turn the page, or don’t even open the link.
Of course, there is still much to do in terms of education through the Ministry of Health or the Caja. It does happen in some form [that education], but there’s a lack of impact, definitely.
People today have knowledge about HIV based on what we knew 40 years ago, or from the films that have been released about it. The movies have been tragic. So if that is where I receive information—that people are going to die, and that they are going to end up rejected—obviously it is all a very negative outlook.
How would you like people to talk about HIV in the future?
Like a chronic illness, which is what it is today. But I hope that people educate themselves properly, because the stigma really is something that makes [the situation] much worse. It really muddies the quality of life of the person with the virus. The reality is that it’s a chronic disease—one that can get complicated.