Opinion | What You Don’t Know About Leprosy

In this video, Claire Panosian Dunavan, MD, professor of medicine and infectious diseases at the David Geffen School of Medicine at the University of California Los Angeles (UCLA), and Maria Teresa Ochoa, MD, clinical professor of dermatology at the Keck School of Medicine of the University of Southern California in Los Angeles, discuss the increase in leprosy cases in Florida. Dunavan and Ochoa talk transmission, global stigma, and what doctors should look for in potential early leprosy patients.

The following is a transcript of their remarks:

Dunavan: Hello, I’m Dr. Claire Panosian Dunavan. I’m so happy today to be talking to my good friend, Dr. Maria Teresa Ochoa, who is a very noted expert in leprosy.

Of course, we’re talking today because leprosy has been in the news because of a spike of cases in Florida. So MT, what would you like to say about that and also maybe the larger context of Hansen’s disease or leprosy in the world today?

Ochoa: I think there are two sides to these questions. One is it’s a very good thing that people now know about leprosy — leprosy is not new. And then, I’m glad that people know that we have leprosy here. The dark side of this news is the stigma of the disease.

Dunavan: So in terms of the cases in Florida, they were a shock because all of a sudden people realize we have this disease here. We want to talk about why there may be a certain risk factor, but for many people there’s no risk factor that they can identify. What’s the normal route of transmission for leprosy?

Ochoa: Yeah. The most common form of acquiring leprosy is through close contact with somebody that has leprosy, and then mostly from through respiratory droplets. But now we also know that there is something that we call zoonotic transmission — which means coming from some animals — and the one in leprosy is the armadillo.

But there are other sources that we don’t know, and then for some people we don’t have a clear explanation, but the most common route is contact person-to-person.

Dunavan: Right. You yourself are a native of Colombia. You spent almost a year in the Amazon as a young doctor, and this is where you first saw patients with leprosy. Maybe describe those patients, who of course had very limited access to early medical care, and the type of patient that you see today in Los Angeles.

Ochoa: Leprosy all around the world is kind of the same because it has the same heavy stigma. The patients in the Amazon didn’t have resources, but we have treatment and we are going to come to the conclusion that early treatment is the most important thing.

Here in LA there are all of the resources to treat the patients. The big problem is that they came to us very late because physicians and the health system in general don’t think of leprosy anymore because it’s rare. It’s not the most common disease in the U.S. We have around 200 cases a year, and then there is not a lot of leprosy in the U.S.

The problem is with the few ones that we see, they come very late and then when they come, they are difficult to treat because of the late diagnosis.

Dunavan: We should probably remind the people who are listening today that this is a very slow-growing bacteria, that it tends to affect the skin and peripheral nerves. So what would be some of the early manifestations in a patient? So doctors are more prepared to suspect it and try to diagnose it early.

Ochoa: Yeah, good question. I always tell the students always to look for three things.

One is the skin lesions that can have an absence or not of sensation.

Second, what we call the peripheral neuropathy — these patients have this [thing] called paresthesia, a sort of tingling.

Then, most of them come from an endemic area, like in any part of the world. The most common ones are India, Brazil, and Indonesia.

And then any patient from an endemic country coming with skin lesions plus peripheral neuropathy and paresthesia or tingling, you have a suspicion of leprosy.

Dunavan: Because you and I have worked together in your clinic, I can attest from personal experience that the patients are from so many parts of the world. You see patients from Brazil and from India and from the Philippines and Pacific Islands and parts of Central America, Mexico — and the different kinds of skin lesions that they initially present with. Maybe just a quick description of what those look like.

Ochoa: Yeah, and it’s very interesting because it’s something that we call a polar disease. Some people have very few manifestations, meaning one or two skin lesions, but some of them on the other part of the spectrum have a lot of skin lesions. That’s the difficulty in the diagnosis, because some of them have a lot, some of them don’t have a lot, but the skin lesions can be what we call hypopigmented (no color) or they can be red, and they can be very flat or they can be raised, but there is no sensation. They are not itchy and some of them don’t have sensation.

Dunavan: Exactly. So some are anesthetic and some are not. And of course, a full thickness skin biopsy with special stains is the first step.

Ochoa: And we are very lucky in this country because we are able to take biopsies, read the biopsies, and make the diagnosis.

Dunavan: I know how important it is for you to combat stigma and you make that message over and over. When you meet the patients, you want to reassure them that you are not afraid of them, that you do not use gloves or wear a mask. Please talk more about how you operate in the clinic and what you have to tell other physicians who are calling you who have misconceptions.

Ochoa: Yes. I think in medicine in general, you have to have empathy. In leprosy in particular, the patients always come with the most incredible stories about shame, about feeling punished by God, about feeling dirty because they get this disease that you can treat with antibiotics. It’s very easy to treat Hansen’s disease.

Then we make the effort to hold the hands of these patients, and we use masks because of COVID right now, but not before because it is very difficult to get leprosy — 90% to 95% of the patients with leprosy — get in contact with the leprosy, you are not going to get it. Like I see all of these patients — I’m not going to bring this to my family or my friends — I’m not afraid of getting leprosy. Nobody around the world that takes care of these patients gets leprosy.

And then, it’s nothing to be afraid of, and people need to understand that. It’s the stigma of the disease. Leprosy is a big example of this [stigma], but a lot of diseases like HIV, tuberculosis, COVID right now — [a lot of] infectious diseases — bring that fear, but leprosy in particular brings a lot of fear.

Dunavan: Yeah. We now understand some things, but maybe not the full picture of why there is for most people an innate genetic resistance. They may be exposed, they even may have a positive antibody that shows that they’ve been exposed, and they will never have the disease. Then there are other people who were exposed decades earlier, and then something happens.

I must emphasize that you and your colleagues published in the New England Journal [of Medicine] on June 29th of this year [about] six patients just like that in the U.S. — no obvious risk factors. So let’s talk about that before we end.

Ochoa: Yeah, it was very interesting to see that case from Florida, but we have this paper recently that is very interesting. As you say, our clinic here in LA that is at the LA General Hospital is a clinic that has patients from all around the world. But then we have patients from this country and patients from Las Vegas. We also see patients from North California, and then these patients are patients without any risk factors. Sometimes they travel to the south of this country, sometimes they travel to any other part of the world.

Dunavan: Just like so many of us, and it could have been a very casual, short trip. So, we continue to have unanswered questions.

Ochoa: Yes.

Dunavan: Maybe we should end with a call for more research

Ochoa: Yeah, exactly. And then going back to the report, it’s all about the immune system. You know, one of the reasons I started working with this disease is also [because] UCLA has an expert on leprosy, Dr. Robert Modlin, who has made big contributions to science in understanding the immunology of this disease and how the immune system is so important in this disease.

Then going back to these patients that are a little bit older on the spectrum, we call something immunosenescence — when your immune system gets a little bit old, it’s not as strong, then maybe that’s a risk factor. But, like you say, we need a lot of research to understand this disease.

Dunavan: Any closing thoughts before we say goodbye?

Ochoa: Thank you. Thank you for the opportunity.

I just want to say to physicians and the public in general: don’t be afraid of leprosy. There are very few cases. Don’t stigmatize any of these diseases. There is a very good treatment for this disease. Early treatment is the key. Keep that in your differential diagnosis when you see a patient with skin lesions, with peripheral neuropathy, and coming from an endemic country or not. And then, we need research.

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