Why renaming a health condition matters

Hello and welcome to Health Check from the BBC. I'm Claudia Hammond here with the latest news from the world of medicine.

Polystic ovary syndrome gets a new name after more than a decade of debate, more in a moment on why this might matter to the hundred seventy million women with the condition. Here in the UK we have a phrase feed a cold and starve a fever. We'll be finding out how true that is later on. And to help me today, joining me from Kenya, I have health journalist Dorcas Wangira. How are you, Dorcas? Hi, Claudia, I'm well. And what do you have for us today?

We have a controversy in Kenya about the AI model being used to determine how much one should pay for their healthcare. And from Peru the association between pesticides and cancer. So Dorcas, I want to start with polycystic ovary syndrome, which is now after much international debate. called polyendocrine metabolic ovarian syndrome. The announcement was made this week at the European Congress of Endocrinology in Prague.

So Dorcas, it is still quite a mouthful, so the abbreviation is now P M O S, but what is it exactly? PCOS what it was previously known is polycystic ovary syndrome and some people would say P cost. So this is a common hormonal disorder that affects women and girls during the reproductive years and even in later stages of life. So this hormonal imbalance, particularly in androgen levels.

As a result, many women with this condition will have irregular, infrequent menstrual periods, sometimes none at all, pain during their menses. Abnormal ovulation, some women will experience changes in hair. You can have excessive hair in your face and other parts of your body like your belly. Some women experience baldness, acne, and even cysts in the ovary.

So before when the focus was mostly on the cysts and some women would argue that the symptoms are not the same, this condition would predispose women and girls to other conditions like diabetes, insulin resistance, and even obesity. And it the main leading cause for fertility. There is no known cause for it. It doesn't have a cure, however it can be managed when you look at the symptoms.

And globally, WHO estimates that it affects around one hundred and seventy million women worldwide. But the sad thing about this condition has been that seventy percent of women who have it are not even diagnosed. And so why the new name now? So the polyendocrine metabolic ovarian syndrome, I could say Pimos after PICOS. The reason why there was this clamour for the change of this name for decades is because one, it is a syndrome and a syndrome unlike a disease affects people differently.

So for instance, if a woman didn't have ovarian cysts necessarily, it wouldn't fit the right diagnosis if you are just experiencing milder symptoms like for instance hair growth or acne, it wouldn't constitute a very strong diagnosis. So the underdiagnosis is a big concern. So who gets to rename a condition like this? I mean the journal The Lancet calls it a multi step global consensus process. How did they do it?

This took a global coalition of patients, clinicians and organizations to agree on a new name

And this consensus was based on more than fourteen thousand responses from patients, health professionals across all regions of the world, as well as in two international workshops. They had input from academics clinical and patient organizations and this process looked at scientific accuracy, clarity, the stigma surrounding PICOS, the cultural fits and also how practical it would be to adopt a new name. Yeah, it does sound as if it was a huge process that they've undergone in order to

to get to this name and to make sure that everybody's on board and that people are happy with this around the world. And of course increasing understanding of any condition uh sounds like a good thing, especially if it's something where people aren't getting diagnosed, but In reality, how much difference will having a new name really make? A name does create awareness. For instance now when you look at the wide array of symptoms It means that you can have more focus on it, more treatment.

And even for that young girl or that young woman who is trying to get pregnant and maybe didn't know why, just because you don't have ovarian cysts which was the main focus of Picos before doesn't mean that you're not eligible for the right health care and even diagnosis. We have seen other names being changed because of stigma. Um for instance monkeypox to M Pox.

We have seen other names changed because of the geographical location, uh if a name is associated with a particular place. But this one goes beyond stigma, goes beyond just people associating it with the wrong cause. It looks at the wide array of how this disease affects women.

Thank you for that, Dorcas. Now, depending on where you live, you may have heard the phrase feed a cold and starve a fever. But is that scientifically accurate? Well, new research published in Nature might have the answer. Greg Delgoff, who led this new study, is professor of immunology at the University of Pittsburgh in the US, and he told me how immune cells work to protect us from infections. The kind of interesting thing about your immune system is it spends a lot of time Just waiting.

Waiting to see something that is foreign, like a virus or a bacteria, or something that's abnormal, like a cancer cell. And when they get triggered, they start to grow and then they start to divide bunches of times to create an army of these T cells. And then those T cells kind of swim around your body. And they try to find the infected or abnormal cells and remove them, curbing the infection or removing cancer before it develops.

Memory T cells are T cells that have seen the pathogen, have gone through an immune response, and then have gone back into that waiting mode. And so now when they see that. Pathogen again. they will respond faster and stronger and better than if they had not seen it before. So how did you do your study? So we asked individuals to come into the lab and get their blood drawn before breakfast.

And then we would ask them to go about their day, have breakfast, have lunch, and then after lunch come back for a second blood draw. We isolated the immune cells from the blood. And we compared them to each other. And what we found was that the T cells that came from the after lunch draw were metabolically enhanced.

But also they were better at doing their job. And what T cells do is find infected cells and remove them. And so this was very, very exciting to us because it suggested that a meal really did make a difference. Or were you surprised to find that a meal does have the impact that you found?

So we weren't really sure what we were gonna find. I mean, at the end of the day, most of the studies in this space have been done over time with different kinds of diets. So we didn't really know what to expect. And so when we got These initial data. This was Surprising. But I think probably what was more surprising was that

after we activated those cells and let them divide and proliferate, is that they were still better. They remembered that they were in that metabolically nutrient-rich environment. Are there any foods that would be particularly good for eliciting this positive immune response? So we had a survey of kind of what did you eat for breakfast and lunch during this six hour period. And what we found was that it really was the individuals that ate a balanced meal that contained

This was really important. Lipids. This was the driver of this long lasting functional improvement. Now I'm not saying that you should be eating like butter for breakfast, but I do think that having a balanced meal that contains plenty of good healthy fats would be something that would probably be the best. type of stimulator of T cell metabolism in this manner.

It's interesting, isn't it?'Cause when we're ill we often lose our appetite and you think that the body would make you want to eat more in order to boost the immune system at the exact time you need it. Yeah, this is something that we only speculate on, but there is this sickness behavior, right? That when we get sick, we don't really feel like eating. It seems a little bit counterintuitive.

But what we kind of speculate is that maybe this is a trick that pathogens like viruses play on us, right? That they're actually causing that feeding behavior to change so that We don't fuel our immune system. So this might be an evasion mechanism that the viruses have adapted to evade detection or elimination.

Yeah, that would be quite clever if the viruses encouraged you to lose your appetite so that they could have a better time replicating. And there is a saying starve a fever, feed a cold. Is there any truth in that then? This suggests maybe you should feed the cold, but then wouldn't you want to also eat when you've got the fever? Yeah, it's certainly a myth. What our data would suggest, you should feed a fever and you should feed a cold.

When you're feeling ill, the last thing you should do is starve that immune system. You should be fueling it because not only will it help you get over that sickness today, but it will also help protect you from that pathogen again. Could this have implications for if people are having treatment for cancer with immunotherapists?

Yes, it very much does. So there's a certain type of immune-based therapy for cancer where T cells are engineered to find and target cancer cells. It's called CAR T cell therapy. And We went back to the T cells that we isolated from healthy donors and we manufactured car T cells experimentally from either the pre-breakfast draw or the post-lunch draw. And what we found was that Those T cells that came from after lunch.

better at finding cancer cells and killing them than the ones that came from the fasted draw. It's not that the fasted draw didn't work at all. It's just that those T cells that came from the Fed state were metabolically and functionally enhanced. They lasted longer. And so we think that this is going to be an important factor to consider when we're thinking about immunomodulatory therapy.

And does this suggest that you should eat some food before you get a vaccine in order to help that vaccine work even better? Yeah. Yeah, absolutely. And that's something that I advise all my friends to do. So perhaps in low income countries might it be a good idea to provide food at the same time as people get their vaccines in in case there's not that much food available?

Yeah, Claudia, this is a really important point. You know, our data really suggests that it's not that vaccines don't work in the fasted states, but we do know that vaccines have less potency in countries in which either food is not readily available or the type of food is not rich, even in developed countries.

We have areas called food deserts, right? Where people can't get access to whole foods. It's really just a lot of processed foods. And so our data really suggest that for vaccination campaigns, especially in the developing world. we should be providing nutrition as well as those vaccines if we want to stimulate strong immunity. And so I think this is something that is really ripe for future study, but I also think has a really important public health component.

What I hope people take away from all of this is that Your immune response is extremely metabolically demanding. And we know this because we do feel pretty wretched when you get sick. And so There is a huge metabolic demand of a successful immune response. So people need to be thinking about how we're going to fuel that immune response to support long-lived immunity.

And I guess that would explain why if you're feeling particularly run down and we know that then you might be more susceptible to to catching infections, it's important to try to make sure you're still eating well. Absolutely. That's a critical thing to remember. And so, you know, treat yourself and tell yourself that it's for your teacher.

Dorcas was listening along to Professor Greg Delgoff there, and I was wondering what implications you thought this might have for vaccination programmes in the global south. Following this research you could say that it would be recommended to give food uh to people receiving their vaccines. For instance, mothers who are taking their children for routine immunizations. I was talking to mothers who say that while they take their children to the clinic or the healthcare center they haven't eaten.

So giving them food would be a good recommendation and it also improves their outcomes once they get the vaccines. What I have seen often is during blood donation drives that there's always a bottle of soda or juice or a snack that's high in sugar like biscuits or bread. Not only is it a good incentive for people who come to donate blood, but it keeps them healthy and strong during the entire process.

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And it is causing some controversy there. So can you explain to us wh what is this new system and how does it work? Well so the new system or the social health authority, which many people will say Shah, was brought in to make universal health care possible. That would mean that you have healthcare not based on your ability to pay but your needs.

So in Kenya you have more than eighty percent of the people who are registered are people who do not have jobs, they do not have a salary. Then you have twenty percent of people who are salaried and can get a standard amount with a standard percentage. So what this AI model does, the proxy means testing, it basically asks whoever is registering, whether as an individual or a household, a set of questions.

to find out how you live and what you own. For instance you'll be asked do you have a toilet? Do you live in a permanent house? Do you have a motorcycle? Do you have a car? And then what it does then it uses machine learning to predict the income you'd have based on your answers. So this percentage that is predicted is what you're given as your annual health payment. So you have ranges for instance six thousand shillings a year, seven thousand Kenya shillings a year.

So what many people do not understand is how is it arrived at? Because someone would argue I don't have a job, where will I get this money to pay? But does anybody check that it's true? I mean people could just say that they haven't got a bike, so that they didn't have to pay as much. Exactly. And that's what one of the members of Parliament asked, is that an algorithm is blind to the reality. With traditional means testing someone would actually look at that to ascertain.

So what the government is doing, it's using CHPs, those are community health promoters. to go round to households and when they're registering people, they're supposed to sort of verify what you're saying. But then you have instances where if you have a phone, you have a computer, you can actually feel it yourself without someone else assisting you. So that's also the cracks of the problem. It's not traditional means of testing, you're using proxy.

And also how do you determine that uh what I have is sufficient to generate income? I may be having a bike but I don't have fuel to use it. I may be living in a house uh which is semi permanent But then I didn't build it. So it doesn't necessarily give you the proper reality of what a person has and how much they can earn.

So it sounds as though there's an issue with the way the testing's done, but also the amounts that people have to pay. And you've been speaking to people in West Kenya near the town of Kakamega. What what did they tell you? So Beatrice Naliaka is a fifty year old unemployed woman. She told me that her premium of forty six dollars a year or thirty four pounds a year is out of her reach. I was asked if I have a house. I told them I don't have a house, I just live on common land.

Then they asked me if I have a permanent toilet and I don't. And then they asked me if I have any business, I said I don't. I said I'm just like this, I have nothing. కాగాగాగాగాగాగాగాగాగా They told me to pay five hundred shillings, and I can't afford it. I also spoke to forty year old Evelyn Opecha. She's a teacher who's unemployed. So her annual premium is much higher than Beatrice. We are afraid because now we are just praying to God that you don't get sick.

Because even at this hour, if you go to the centre, you go to the social health authority room that is now mandatory. Now you are just afraid. If I get sick, what will I do? And will the cost be high or not? When this new insurance system was being put in place by the government, uh the president was categorical that there'll come a time when Kenyans won't have to pay so much for health care.

you won't have to have fundraisers so that poor people will be taken to hospital. But what we are seeing is that the poor poor Kenyans are saying they cannot even afford to pay it. However, for those who are salaried, they're paying more taxes for this healthcare system. You have a fixed amount of your gross salary. So people are paying more, the middle class, the employee are paying more. The poor are saying that we cannot afford to pay.

The end result is that more people are still not able to access healthcare. So people do not understand. So what are you using? What what is your criteria particularly for those who do not have um a salary? And what does the government say? It says that this system is not new to Kenya, that there are other countries globally that use the same thing.

proxy means testing. They cited Cambodia, Indonesia and Singapore. But it is also looking at how people can appeal. For instance if you're given that amount like the two women we spoke to, they can try to appeal it. and see if they can be given a lower amount. However, it also argued and said that no system is perfect in terms of determining what people should pay. And uh Claudia what is really important is access.

It's not even about being able to pay for your final bill but being able to access if you go to a healthcare center and you are told without this shah we will not serve you already that that is a serious problem. Well thank you very much for that. And if you've encountered something similar where you live, we'd be interested to hear from you. Do email us at healthcheck at bbc.co dot uk.

To Peru now where scientists have mapped the use of pesticides being used today and rates of cancer across the country to see whether there is an association between them. Peru was chosen as the location by researchers in France because it has good data and a lot of agricultural land, but also because the country has a surprising history of cancer in younger people, especially liver cancer.

Dr Jorge Honles is an epidemiologist at the University of Toulouse, and I asked him how the research was done. We built the environmental model. that tracks thirty one of the most commonly used pesticides in Peru and how they move across the landscape through rainfall, surface, runoff, soil chemistry, terrain. And then we overlaid that with more than one hundred and fifty thousand cancer cases from Peru, diagnosed between two thousand seven and twenty twenty. And what did you find?

We found that environmental pests and mixture patterns across Peru are associated with geographic cancer risk patterns in ways that are worthy of serious public health attention. So you found that in the areas where the more pesticides were used, people were more likely to develop cancer? Correct. There's a risk multiplier being chronically exposed to pesticides to develop cancer in certain communities. And would some of those be more likely to be indigenous communities that are affected?

Yes, especially in the Hunin region of central Peru, which include the Chanchemayo province, we identify a cluster of liver cancer. with a very strong special association with pesticide exposure. What makes this particularly striking is that this cancer occur predominantly in young non serotic individuals from indigenous communities. They don't fit the conventional picture of liver cancer driven by hepatitis B or alcohol.

There are also molecular analysis that confirm that tumors in this cluster carry a non genotoxic pesticide signature. Yes, so can you explain that? So in addition to your work on this large scale, you also looked at the data on the genetics of individual tumours in a small number of people with a cancer to explore your results further. And what what did you find there?

When we took liver tissue samples from patients with liver cancer living the disease regions and these specified hotspots and compare them to tissue from patients from other populations like France, Taiwan and Turkey. We found a distinct pattern of gene expression that is unique to the Peruvian patient. especially genes controlled by what we call master transcription factors, which are like the switches that keep liver cells behaving like liver cells.

and these were significantly disrupted. The disruption was already present in the apparently normal tissue adjacent to tumors, suggesting it begins long before the cancer develops. and it creates a vulnerable state in the cell so the cells can be converted in a in to a cancerous cells by a second hip disruptor like uh inflammation or a viral infection. or other exposure to like tobacco or or stuff like that.

Of course regulations on pesticides can vary a lot from country to country. So were these pesticides not considered carcinogenic? Correct. These pesticides are not classified as cinogenics, but this classification comes mostly from AIRC or WHO. This finding suggests that the danger lies in the in the mixture and what the these mixtures do together and cumulate the effects over a lifetime.

So the regulatory framework is not simply designed to assess this kind of collective non genotoxic risk. They mostly look for direct DNA damage and this doesn't act like that. So these pesticides will have been attested, though, individually. Yes, most of the studies uh test uh chemicals one by one or in animal labs or in a small cohorts. This is the first time that a mixture of pesticides is shown to be disrupting at molecular level in in cancer patients.

In practice, wouldn't it be almost impossible to test all the pesticides in combination in the lab to work out exactly which ones might be harmful to health? I mean there would be so many different combinations and and different tests that you'd need to do. Correct. Um it is let's say almost impossible to test all the combinations for all the pesticides that that we know and the right dose and the right combination You focused on Peru, but do your findings have wider lessons globally?

Yes, this is not just a Peruvian story. Mixture of pesticides are applied globally in Europe, United States, Canada, UK. The question is who is looking? Environmental health uh is inherently complex because people are exposed to mixture over decades rather than isolated chemicals under laboratory conditions.

And of course there is growing concern about food availability, especially with with climate change, and many farmers would argue in order to provide enough food they need to use pesticides, and of course having enough food protects people's health. But what is the solution in your view? Right. Regulators should take into account more information like geographical vulnerabilities and start testing mixture of of compounds.

So they can track more of this pesticide exposure that can be harmful to health in populations. Juhe Honles. Now Dorcas, of course, regulations do vary a lot around the world for which pesticides can and can't be used where. What's the attitude like towards them in Kenya?

We have some pesticides which have been banned in Europe because they're linked to cancer and reproductive harm, but they're still being actively sold and used in Kenya. So people are asking why are we still having pesticides here that have been banned in other countries? And when you have agricultural produce that isn't exported because they are found to have pesticides that have been banned, so it's causing a ripple effect.

up in the eighties, in the nineties and in the early two thousands, Kenya was a leading producer of pyrethrum. And pyrethrum was being grown by farmers. It looked like a flower. It is a flower. But over the years many farmers stopped growing it because the returns would take so long and now we're having a situation where you're importing a lot. So while they are welcome because of what they do, there is a growing clamor to ensure that what is banned elsewhere isn't sold in our own country.

Well thank you so much, Dorcas Wangera, for joining us for Health Check from the BBC for today. And thanks to the producers Hannah Robbins. Jonathan Blackwell and Georgia Christie and our studio engineers today, Sol Whitney and Dave O'Neill. I'm Claudia Hammond and in the next episode of Health Check, we'll be finding out about the next generation of hearing aids.