IRA FLATOW: This is Science Friday. I’m Ira Flatow. The White House and the CDC today announced progress on increasing availability of tests, treatments, and vaccines for monkeypox. Monkeypox continues to spread in the US. The virus causes fever and painful sometimes blistering rashes, and it seems to spread by both respiratory and skin to skin contact.

The number of confirmed US cases keeps rising. With hotspots like New York City reporting a number of likely positives too. But reported numbers may be still too low because people seeking tests have also reported delays, roadblocks, and trips to multiple providers just to get swabbed. Even the swabs get delayed to and from the lab.

Vaccines are rolling out slowly. New York City’s first batch of vaccine appointments was so popular that traffic crashed the website. The majority of cases so far are concentrated in the gay community of men who have sex with men, as well as people in the same sexual networks. We talked to Dr. Keletso Makofane. He’s a public health researcher based in New York City, and he said he knew multiple people who had tried repeatedly and failed to get tested for the virus, including one friend who had to see four different doctors in the process.

KELETSO MAKOFANE: His doctor did a CT scan before swabbing him for monkeypox. It’s unbelievable that you would go to those lengths to avoid investigating this thing that is in the news and right in front of your face and the person who is very knowledgeable about his body and about the science is pointing it to.

IRA FLATOW: And he says people are angry, too, to see an inefficient response unfolding even as people continue to find themselves exposed and symptomatic.

KELETSO MAKOFANE: People are experiencing immense pain, and people are hearing stories about their friends experiencing immense pain. They are angry. I think the anger is a response that makes sense.

IRA FLATOW: Dr. Makofane is also the principal investigator of a new community-driven monkeypox research project called Respond MI, which he said was necessary because of the frustrating slowness and lack of information in the local public health response.

KELETSO MAKOFANE: The information systems that people depend on to figure out what’s happening in this outbreak in the US are very, very bad. The scale of testing was so low that we knew that those numbers can’t help us to respond. We need to have information about the outbreak that doesn’t depend on people engaging with the health system, because we know that not everyone can engage with the health system.

IRA FLATOW: Dr. Tyler TerMeer is the CEO of the San Francisco AIDS Foundation. His clinic has set up a hotline specifically to field concerns about monkeypox. He says interest is so great that they’re getting one to two calls per minute.

TYLER TERMEER: Many folks who are calling into our hotline are frightened. They’ve never heard of monkeypox before, and they have just received an email from an event producer saying they were exposed to monkeypox. Then their search begins for vaccine, they’re waiting on long phone tree cues, they’re standing in these long lines uncertain if it will truly result in a vaccine at the end of the day. This is scary stuff.

Regardless of whether it’s fatal or not, things are scary when there are a lot of unknowns, when people don’t know what they’re supposed to do.

IRA FLATOW: Dr. TerMeer’s clinic has received fewer than 300 doses of vaccine.

TYLER TERMEER: We would need something like 6,000 doses to effectively respond to our patient load at magnet. And while we know that there are about 500 additional doses coming our way by the end of this week, we currently have a waiting list of eligible patients of over 2,500 individuals who want access to vaccine and are waiting frantically trying to find one in the city.

IRA FLATOW: Now, I want to bring on one of the veteran researchers of the monkeypox virus, Dr. Anne Rimoin, an epidemiologist at the School of Public Health UCLA. She’s been researching this virus for more than 20 years. Welcome back to the show, Anne.

ANNE RIMOIN: Thanks for having me. It’s nice to be here.

IRA FLATOW: How would you characterize the seriousness of this outbreak at this point, especially compared to other places this virus has showed up in the past?

ANNE RIMOIN: I think we’re at a very important moment in this epidemic. We have known for decades that monkeypox had the potential to spread in vulnerable populations, but I think it just managed to get itself into populations that have a lot of close contacts. It’s spread very, very quickly, and now we really have to come to the point of deciding what are we really willing to tolerate here for a pox virus spreading, because the stakes are high.

If this virus continues to spread, it’s very likely to become entrenched in human populations, spreading from person to person regularly. And we also have this very important piece to think about. We know that this virus is a rodent pox, and if it gets into rodents rodents will transmit it very easily. It will become very, very difficult to control.

IRA FLATOW: That doesn’t sound like good news here.

ANNE RIMOIN: It’s not good news, but there is good news here, which is that we have vaccines that work. We have therapeutics that work, and we have control measures that work. And we need to be hitting this very hard right now. We need to be making sure that we have all of these pieces together working together and doing so quickly if we want to avoid having monkeypox become a disease that we have to deal with regularly.

IRA FLATOW: One thing I’m hearing is that health care providers– and we just talked about this– are having trouble identifying patients, because their symptoms are presenting so differently from textbooks. What do you think and why do you think this is happening?

ANNE RIMOIN: That is absolutely a problem. This virus is presenting in a very different way than we’ve observed it in sub-Saharan Africa, and the textbooks all are reflective of clinical presentation that we’ve observed in the Democratic Republic of Congo, mostly. And the experience in Nigeria has not really made it into these textbooks in the same way, and I think that we’re only beginning to truly appreciate that these focused lesions, this very different clinical presentation is actually probably a lot more common than we were aware of even in Africa.

If you’re not looking for something, you’re not going to find it. And so now that we understand that monkeypox can present in this manner, it’s really important to even go back to places like sub-Saharan Africa to be able to truly understand has this been spreading in this way for a very long time and we’ve just never observed it? We must have really good clinical presentation descriptions, case definitions available for clinicians. We need to have excellent education out there without the kind of widespread testing that will allow people to be able to understand it very quickly.

It makes it very complicated to be able to diagnose it, because this is a rash, and rash illnesses are fairly common. Clinicians see rashes all the time, so I think it’s very, very important that this case definition and testing become widely accessible, and then we’ll have a much better idea of how far this is spread. I think another thing that you brought up was this issue of, well, what about the textbooks?

Well, I’ve been one of the people that’s written the textbooks. We write about what we know and the data that we have. And so all of these chapters are going to have to be rewritten. It’s going to be a completely different chapter than what has been written in the past, and it’s important to be able to update those things as quickly as possible with the new data, because people use this as a reference.

And if you don’t know what you’re looking for and you don’t have any testing for it, it makes it very complicated to be able to find it.

IRA FLATOW: You know, we mentioned this connection. You were talking about use the word smallpox and monkeypox. Do people who have already been vaccinated for smallpox at birth, do we have immunity to monkeypox?

ANNE RIMOIN: That’s a very good question, and the answer is previous smallpox vaccination is likely to provide some protection, but the extent of the protection is hard to assess. So these are studies that need to be conducted right now.

IRA FLATOW: Right. Right. I know more than 10 years ago, you were publishing a warning that monkeypox cases were rising as vaccination to small pox subsided. How does it feel as someone who has researched this virus for what 20 years to see it suddenly so concerning to people in the US right now?

ANNE RIMOIN: It’s frustrating to see us repeating the same mistakes over and over again. We know that it’s important to have situational awareness. We’ve known that cases are increasing even in sub-Saharan Africa, so we’ve had some warning signs. And we’ve seen over the last several years importations happen somewhat regularly since 2018, and that should have been a warning sign as well.

It was fairly inevitable that eventually you would start to– you’d see some person to person spread.

IRA FLATOW: In June, the World Health Organization said they wanted to rename this virus out of worries that the name monkeypox would further racism and other stigmas against patients. Does monkeypox need a different name?

ANNE RIMOIN: Well, I think it’s really important to pay attention to how people are feeling. The reservoir is not monkeys, it’s rodents. So it is a misnomer in and of itself. So there’s no benefit to keeping a name that creates stigma in any way, shape, or form, because if the name monkeypox makes people less likely to seek care if there’s any stigma, if there’s any feeling that makes them feel shame in any way, shape, or form. And if it hurts anyone, change it.

IRA FLATOW: And there you have it. Thank you very much, Dr. Rimoin, for taking time to be with us today.

ANNE RIMOIN: It’s my pleasure.

IRA FLATOW: Anne Rimoin, epidemiologist at the UCLA School of Public Health. And now we go to a researcher we last talked to at the beginning of a very different viral outbreak, the COVID-19 pandemic. Dr. Jennifer Nuzzo is an epidemiologist, director of the new Pandemic Center at Brown University in Providence, Rhode Island. Welcome back to the show.

JENNIFER NUZZO: Thanks so much.

IRA FLATOW: Let me begin with you and your colleagues recently writing an op ed essentially begging for a better testing protocol for monkeypox. Can you explain why testing has been so slow and what makes it not good?

JENNIFER NUZZO: Yeah, so for many people, this may feel familiar given what we went through with COVID-19. At the beginning stages of the pandemic, it was quite hard to get tested. Back then, it was because we didn’t yet have a test and it took some time to develop a test and send those to laboratories. At the early start of this monkeypox outbreak, that wasn’t actually the problem.

We actually had a test for the orthopox virus, which is the family to which the monkeypox virus belongs, and it was a test that was already at public health laboratories around the country. But it was very hard for health care providers who were seeing patients to get specimens to those laboratories. It requires a different process than they usually use to send specimens to be tested, and it was just a cumbersome, hard to navigate process that was taking so long that it effectively limited who could be tested.

And right now, given that we have limited other tools to use, there are, of course, vaccines and some therapeutics that we could use to treat monkeypox. But right now, our main intervention is testing. Diagnosing people who are infected so that they can know that they have the virus and so they can stay home for as long as they’re contagious and not inadvertently spread it to others.

IRA FLATOW: This is Science Friday from WNYC Studios. Talking to epidemiologist Jennifer Nuzzo about the ongoing outbreaks of the monkeypox virus. Let’s roll the clock back to May. If you can rewrite the history of how we initially responded to this virus back then, what would have happened differently?

JENNIFER NUZZO: Yeah, I think for me, maybe in the early days the fact that we had a laboratory test already available and that we knew that we had some vaccines available I think maybe ameliorated some of the early worry. But very soon after, we started hearing that, of the infections that we found, a number of them, we didn’t know necessarily who they got it from. And when you have a transmission chain and you can’t identify all the links in the transmission chain, that means it’s going to be harder to control the virus.

So that was worry number 1. Worry number 2 was when I started hearing some of the top infectious disease doctors in the country complained that it was really hard to get their patients tested. And I thought if these folks who have a very high incidence of suspicion, know a lot about monkeypox and know about the importance of testing their patients, if they’re having a hard time navigating the system, then other busy health care providers who possibly have far less knowledge and perhaps less understanding of the urgency to test their patients were likely not going to be able to work within that system too.

That should have told us that we need more flexible testing and more availability of testing through the regular processes that doctors and nurses use to other– the way they usually diagnose their patients. That should have really happened within the first few weeks.

IRA FLATOW: Do we have a narrow window that’s going to be closing before a much bigger problem happens?

JENNIFER NUZZO: Yeah, we have a narrow window. I mean, right now we have an outbreak that is grown quite quickly in the US and part of that is because we’re just finally turning on the light to look for cases. And whenever you do that, you find a lot more than you saw before, but there is still concerns that this outbreak is growing in size, so that adds some urgency. But we also, I think, have to worry that this could get out of hand, if we don’t act with more urgency.

And I think one of the things that worries a lot of people is that there’s no biological reason why this virus will stay confined to any particular patient group. It’s spread by very close contact, and so there is of course the worry that we could see the virus turn up in patient groups that may have more severe symptoms. It’s a blessing that we haven’t yet experienced deaths in this outbreak, but I think we should act to make sure that doesn’t happen and also act to meet the health needs of the patients that have been struggling with this virus.

I know people are feeling very frustrated that they’re still not able to access testing, that they don’t know how to get vaccinated, that there aren’t enough vaccines available, that it’s a black box in terms of who can get vaccinated and when. We need to fix this.

IRA FLATOW: Yeah, that’s really interesting. We still need to a lot about the virus itself, don’t we?

JENNIFER NUZZO: Absolutely. And this is also a test of our larger preparedness system, and so far, I am seeing some real worrisome signs that we have some gaps that we need to fill. If we had a more transmissible, more deadly virus, I really worry about our abilities to control it. We saw the shortcomings of a lack of preparedness throughout the COVID-19 pandemic. One would hope that we would use those hard lessons learned to bolster our preparedness to get more ready for events like these that are going to become increasingly frequent in our future.

But unfortunately, I have not seen meaningful progress to suggest that we are taking a hard look at our public health and medical systems and making sure that they are ready to deal with the constant threat of new infectious diseases.

IRA FLATOW: Jennifer, unfortunately, that’s about all the time we have. Thank you so much for your work and for filling us in.

JENNIFER NUZZO: Thanks for having me.

IRA FLATOW: Jennifer Nuzzo epidemiologist and director of Brown University’s new Pandemic Center, and thanks again to Tyler TerMeer, Keletso Makofane, Anne Rimoin for their time and helping us unpack this public health crisis.

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