With Monkeypox, there's an emotional toll along with the physical symptoms

INTERVIEWER: Monkeypox cases are still going up in Minnesota with 123 confirmed cases in the state so far. MPR health reporter, Michelle Wiley's been reporting on the outbreak. And she joins us right now. Welcome back to the show.

MICHELLE WILEY: Thanks for having me.

INTERVIEWER: All right, first COVID, now monkeypox. What a strange set of viral events. What are the experts saying about the coverage of what is a growing public health issue?

MICHELLE WILEY: Yeah, I think it's a challenge because from the state's perspective, you want to have an appropriate response. So making sure people have the information they need, they can get the care that they need without also causing worry or unnecessary panic. But from the perspective of people who are hardest hit, particularly men who identify as gay or bisexual, I think there's a feeling that state and federal government should be doing more to protect people.

At the same time, there's been a lot of reporting highlighting how the US could have done more when we saw cases of the virus increasing. There were calls months ago to provide more testing, more vaccines, to do more, and that just didn't happen, which I think feels pretty frustrating after years of COVID, where we've-- this feeling the government should have a better grasp at addressing issues like this, especially in this case because monkeypox is a known virus. It's not like COVID. We weren't coming at it from trying to develop a vaccine. It was already something people knew about.

INTERVIEWER: You had a really good story, and we're going to hear this in a minute. And you talk to a man named Kyle Olson. Tell us about him.

MICHELLE WILEY: Yeah, so Kyle lives in Minneapolis. He started feeling really sick towards the end of July. He thought it was the flu or maybe even COVID. And then he started getting these lesions. And he describes them as the most painful thing he's experienced in his life, like a stabbing pain. Eventually, he got diagnosed with monkeypox and entered a quarantine period. He's healthy now. He's out of that quarantine. But it sounds like the virus lasted for a few weeks.

INTERVIEWER: How did you find him?

MICHELLE WILEY: I got connected with him through Dylan Boyer at the Aliveness Project. He knew Kyle, and that he'd been diagnosed, and that he'd been really open about his experience online.

INTERVIEWER: OK. So there's been a lot of stigma around monkeypox. Did you have difficulty connecting with someone who wanted to talk with you?

MICHELLE WILEY: I actually think it was because of that stigma that he did want to talk to me. And that's something we've actually seen across the country, people are connecting through social media and being pretty out and open about it because they know this stigma is out there and they don't want to be ruled by it.

INTERVIEWER: Your story focuses in on that kind of stigma toward those suffering with monkeypox and how it's affecting its spread. Let's play your story right now. Let's listen.

[AUDIO PLAYBACK]

- When Kyle Olson first started feeling sick, he thought it was the flu or COVID-19.

- I just slept for like three days nonstop. So I couldn't do anything. I was so sick.

- Then painful lesions started appearing on his body. Olson was diagnosed with monkeypox, and started quarantining in his Minneapolis apartment. It was early August, and even though he'd been through years of COVID-related lockdowns, this was different. He didn't know how he got monkeypox or anyone else who had it.

- I think people are ashamed of it.

- Monkeypox is a virus in the same family of viruses as smallpox, but is generally less fatal. It's been present in parts of Africa for years, and has recently swept across the world. While anyone can get the virus, it's most commonly spread through close prolonged skin to skin contact. Most cases in the US and Minnesota have been among men who identify as gay or bisexual, or other men who have sex with men.

Since cases began appearing in the country, there's been an ongoing national conversation about how to address those most vulnerable to the disease without perpetuating bias. That's a challenge that public health officials in Minnesota have been navigating too. Jose Ramirez is an HIV testing program supervisor at the Minnesota department of health.

- We had a little pushback from community about some of our earlier messaging being stigmatizing or talking too much about gay bisexual men.

- So they broadened their outreach, emphasizing that anyone can get monkeypox while working to provide targeted information to those hardest hit by the virus. But despite those efforts, health officials say this stigma is still affecting how Minnesotans tackle monkeypox.

- It's really getting in the way of people getting tested.

- Mattie Laidlaw is the community engagement systems planner in MDH Center for Health Equity.

- Particularly, if you look at communities in greater Minnesota, for instance, we've heard stories that people are not wanting to go on and get tested because they don't want to get invasive questioning about their sexual behaviors which aren't really necessary for the provider who's doing the testing to know.

- Part of the challenge is that even though monkey pox can be transmitted through sexual contact, it's not considered a sexually transmitted infection or STI. While there have been some calls to start treating monkeypox like an STI, health officials are steering away from that. For one because, sex isn't the only way you can contract the virus. Dr. Michael Ross is a professor in the Department of Family Medicine and Community Health at the University of Minnesota.

- It's sexually transmissible, but it's not sexually transmitted in the sense that it's only transmitted by sex. And so that's a distinction that many people just don't quite understand. But it's a very important one.

- And for another, because labeling monkeypox as an STI could lead to people shaming those who get it. After Kyle Olsen got his diagnosis, he decided he was going to be open about it.

- So I tried to make it a mission to talk about it because I know a lot of people are probably secretly dealing with it.

- He posted about it on Facebook and started answering people's questions.

- I think it connected people, but it also put me on the spotlight of negativity with the gay community.

- Dylan Boyer director of development at the Aliveness Project says shaming people doesn't help. Something he's seen firsthand combating HIV.

- We could not shame people into wearing condoms. We could not shame people into not having sex anymore.

- Instead, he says it's more helpful to use a harm reduction approach.

- Give people accurate and accessible information along with access to care. Let them make their own dignified choices and what's good for them in their health.

- For Olson, who finished quarantine just before his birthday, he says, he wished people were more open about the virus.

- I just hope that people are more open about it and don't put people down because of it.

- Olson says it's a very painful experience to go through, and people should be more empathetic. Michelle Wiley, MPR News.

[END PLAYBACK]

INTERVIEWER: By the way, what's treatment like? I'm curious.

MICHELLE WILEY: Yeah, I think it depends on your situation. If I remember correctly, Kyle was able to get T-pox which is one of the sort of few treatments that exist. But it's not something that's necessarily equally spread. So I think it really depends on your situation.

INTERVIEWER: Stirring it back to the conversation at the very end there about being empathetic. It sounds like much of the stigma around monkeypox is related to people's judgment of men having sex with men?

MICHELLE WILEY: Yeah, I think that's accurate. Public health officials are clear that stigma is misplaced. Sex among queer men is not the only way to transmit monkeypox. But moreover, sex isn't the only way it can spread. Mattie Laidlaw, who you heard in that piece, the community engagement systems planner at MDH's Center for Health Equity had something to say about that.

MATTIE LAIDLAW: This is not the first outbreak of monkeypox and that previous outbreaks were not impacting this community and not impacting people through that mode of transmission. That is largely what people are associating with the outbreak this time around.

INTERVIEWER: OK, so just to remind us here, how is this virus spread?

MICHELLE WILEY: So health officials say it typically spreads through close skin to skin contact or prolonged direct close face to face contact. Officials have said a majority of cases in Minnesota were transmitted through sexual contact. But the virus can spread if a person uses the same bed sheets as an infected person, through close contact in a household. So it's not just sex that can transmit the virus.

INTERVIEWER: And what can someone do if they don't feel safe going to their local clinic or a family doctor?

MICHELLE WILEY: Yeah, I think in that case it's best to reach out to the providers that you do trust. That could be folks like the Aliveness Project, Red Door Clinic in Minneapolis, could be a Planned Parenthood. But it's definitely a challenge, especially if you live in a more rural area where there aren't as many providers. So I don't know that there's necessarily an easy answer.

INTERVIEWER: All right. Michelle, thank you so much. Good report.

MICHELLE WILEY: Thank you.

INTERVIEWER: Michelle Wiley is our health reporter.