CDC

Dr. Ruth Etzel: David vs. Goliath Environmental Health Hero

Ruth Etzel, MD, PhD is a storied Pediatrician, Preventive Medicine specialist, and epidemiologist.  She led the children’s environmental health activities at the World Health Organization (WHO) in Switzerland from 2009-2012, and later served as Director of the Office of Children’s Health Protection (OCHP) at the U.S. Environmental Protection Agency. She currently has faculty appointments in the Department of Pediatrics at Georgetown University and in the Milken Institute School of Public Health at George Washington University.  During her early career at the Centers for Disease Control and Prevention (CDC), she investigated numerous epidemics of diseases linked to the environment. Having gotten to know her over years working with the Children’s Environmental Health Committee (CEH) of the American Public Health Association (APHA), I have come to consider her a personal friend as well. Dr. Etzel is founding Editor-in-Chief of Pediatric Environmental Health, the famous Green Book for doctors about how to recognize, treat, and prevent environmental illnesses in children.  It was the first book on pediatric environmental health to be published and is now in its 4th edition. She also is co-editor with Dr. Phil Landrigan of the Textbook of Children’s Environmental Health and has been a trailblazer in growing Children’s Environmental Health as an interdisciplinary field. She has a broad perspective on the impact that promotion of harmful products by industry has had on children. Among many honors, she has earned The International Society for Children’s Health and the Environment (ISCHE)’s Needleman Scientist-Advocate Award for Protecting Children from Toxic Chemicals because she has personally come under attack for her efforts to prevent children’s exposures to hazardous substances. One of her most important insights is that so many diseases and disabilities that afflict children are preventable. Another is that we need to be sharing stories about how unregulated chemicals affect real children, like my Katherine. As she says, “one of the most powerful things we have are the stories that emanate from the bad things that happen to children.” Although everyone would wish first and foremost that there were no children harmed, millions are, and we need to share accounts of real harms to real people. Another highlight from her interview is that “winning David-and-Goliath environmental fights takes time and solidarity.” Dr. Etzel knows better than most the awful power of Goliath industries, and yet she persists, eternally hopeful and ready to fight another day. I have found solidarity and the good fight among environmental activists time and time again, particularly in the APHA CEH group I have worked with over seven years, and she for much longer.

This interview has been lightly edited for length and clarity.

Figure 1: Ruth Etzel, MD, PhD, FAAP.

 

JMK: Good morning, Ruth. It’s good to see you!

RE: Wonderful to see you.

JMK: I want to thank you again so much for having read and blurbed my book.

RE: Oh, you're very welcome. I'm hoping that you're getting a lot of good comments on it.

JMK: I just completed a two-week seminar on Endocrine-Disrupting Chemicals (EDCs) at Woods Hole with University of Chicago’s Marine Biology Laboratory (MBL) and yesterday sent the book off to several people who led that course – Pat Hunt and Joan Ruderman – and hope they will like it.

RE: Woods Hall is a relaxing place to be.

JMK: I just loved the intense learning all on one subject, morning, noon, and night, and then all along, someone feeds you; you have a place to sleep, amazing companions, and then you go outside, and it's so beautiful, with water on every side. Have you done one of those seminars?

RE: Years ago, we did one. And you're right. It was like being at summer camp, except it was more intellectual stimulation than physical stimulation. And being in such a wonderful wooded environment just made me feel young again.

JMK: That's how I felt. I was the oldest student by far.

RE: You've got the wisdom that comes from experience, having personally faced actual exposures and actual consequences, which is something a lot of younger people don't yet have.

JMK: Well, God forbid they should have had exposures like I have had. But because I had just come from the CHPAC, it was also very interesting when we talked about the political circumstances.

We probably should get underway. I do have a list of questions, but I mostly just want to hear your stories. It's been such a pleasure to get to know you over these years through APHA. So I will be glad to write about whatever you are willing to tell me, and I will, of course, send everything by you and make sure it's okay with you before I would publish anything in a book project or on the blog.

My first question is very general: how did you first get interested in this area of children's environmental health (CEH)? Was there anything in your childhood or early training that got you here?

RE: I would say that I was influenced by my father’s words during my childhood in Wisconsin. My dad would talk to me and my three sisters about cigarettes as we were growing up. Sometimes he would say, “See that person who is smoking? They would really like to be sucking their thumb.” As a little girl, that made me think, “Oh, who would ever want to smoke; it’s like sucking your thumb!” And that was ingrained in my brain.

After finishing medical school at the University of Wisconsin, I was delighted to be accepted to a Pediatrics residency in Chapel Hill. When I was doing my residency in North Carolina – famous for its tobacco – my mentor came to me one day and asked, “Would you like to work with me on a project about passive smoking?”  He explained that he wanted to study whether children could be exposed to tobacco smoke just by breathing around others who were smoking; I jumped at the chance to be involved.

We did a study – the first in the world – showing that children who were exposed to tobacco smoke from their parents’ smoking had measurable levels of cotinine and nicotine in their urine and saliva. Up to that time, researchers had commonly used questionnaires to assess active smoking, but they did not have a way to measure children’s actual exposure to tobacco smoke. Scientists knew how to measure lead in the blood, and they knew that having a marker of human exposure to environmental pollution was a very powerful tool, but there was not a marker for involuntary exposure to tobacco. Carbon monoxide did not work very well in non-smokers.

We published our study results in 1984 in the New England Journal of Medicine (NEJM) and documented that investigators could use cotinine and nicotine to show that tobacco smoke constituents had been absorbed by a child. Our startling findings received a great deal of attention from the media, and as a result, the public became concerned about passive smoking. I remember getting telephone calls from all over the country; parents were saying, “I didn’t know that my child was exposed when I was smoking.” And I would say, “It’s true; we can measure nicotine and its by-product cotinine in the urine and the saliva of your child.” This was the beginning of a paradigm shift in the way people thought about who was harmed by smoking – it was no longer just the smoker but also those around him or her. I became deeply interested in trying to identify the health impacts of passive smoking on children. I set about designing an epidemiologic study to determine whether involuntary smoking was linked to middle ear disease in children (https://pubmed.ncbi.nlm.nih.gov/1641287/).  And with colleagues, I studied passive smoking and lipid profiles in adolescents (https://pubmed.ncbi.nlm.nih.gov/1861923/).

Gradually, my research on smoking’s effects on non-smoking children made me realize that exposures to chemicals in the environment could have a major impact on children’s health. This was not something that I learned much about during medical school. So that is how I got started on my journey to becoming an epidemiologist – through passive smoking research. I’m glad that over the past forty years, I’ve been able to be part of a remarkable change in public knowledge about the adverse health impacts of smoking on children. In the early 1980s, the American public really had no comprehension of the risk of tobacco smoke exposure to children. There were very few smoke-free spaces and few rules on where a person could smoke. Today, the public understands the reasons why children should not be exposed to cigarette smoke. We’ve subsequently seen the public push for regulations banning indoor smoking that have resulted in major health benefits.

I had the privilege to write the Report to Congress that recommended prohibiting smoking on airplanes. It made me very happy in 1988 to see the first regulations banning smoking on U.S. flights under two hours. And smoking was subsequently banned on international flights in 1996. It’s very satisfying that for a couple of generations now, children have been able to fly without being forced to breathe tobacco while on the aircraft (https://www.federalregister.gov/documents/2000/06/09/00-14480/smoking-aboard-aircraft).

I have been able to play a small part in transforming tobacco smoke exposure from something that was perceived as normal to something that is seen as hazardous, and therefore prohibited in many public places. To witness such change in your own lifetime is very gratifying. I think that change took place, in no small part, because we developed a measurement to show people how much nicotine and cotinine was in their children’s bodies. That got me hooked on trying to better quantify the exposures of children to other hazardous substances. It seems that when scientists provide parents with actual documentation of their child’s exposure, it can help them to have a clearer understanding of that exposure and can motivate them to take action.

My early research on tobacco smoke got me interested in studying some of the other pollutants of indoor air. Many people used to think that outdoor air was “dirty” but that indoor air was somehow “clean.” It took many years and multiple studies before people recognized that the indoor air had a lot of pollution as well. Often the indoor air pollution wasn’t visible, and it had no smell, so many people did not think it was there. The work of many scientists has now documented that indoor air pollution is harmful to children. One reason this was important is that kids under one year spend far more time in indoor environments than outdoor.

One indoor air pollutant that I investigated was mercury in indoor air. I’ll tell you a story about that. There are times, as a scientist and as a clinician, when you have an opportunity to help identify a problem and develop a solution, and then you are able to follow all the way through to putting public health interventions in place. I’ve always been interested in translating research into the policies that can change society. We did that very effectively with our work on secondhand tobacco smoke.

I also had the opportunity to do that with mercury in indoor air. After I finished my pediatric residency, I decided to go to the Centers for Disease Control (CDC) to become an Epidemic Intelligence Service (EIS) Officer because I was very interested in doing national-level work at the interface between research and policy. One day while I was working at the CDC, I got a call from authorities in Michigan about a little boy with acrodynia (mercury poisoning), a condition that is pretty uncommon. Though pediatricians may learn about acrodynia in their training, it is rare to see a case.

An esteemed toxicologist in Michigan had seen cases of acrodynia before, and she confirmed that the diagnosis was correct. She verified that the boy definitely had mercury poisoning. However, everyone was puzzled how the child had been exposed to mercury. We did an epidemiologic study to try to figure out how this boy got acrodynia. His parents reported that one day the boy seemed perfectly normal, and within a week, he had stopped playing, had retired to his bed, and buried his head in his pillow shielding his eyes from light (acrodynia causes such photophobia that children don’t want to expose their eyes to the light). This condition is called acrodynia; acro means extremities and dynia means pain. Children with acrodynia have such severe pain in their arms and legs that they stop walking.

This little boy was four years old. His father had taken a video of him trying to get out of bed to walk. The video shows the little boy just crumbling to the floor because he had such pain in his legs that he could not walk. Previously, he had been running and playing and chasing balls and doing all the things four-year-olds do.

The question was, how had this little boy been poisoned with mercury? The boy’s family reported that they had experienced a fire in their home, and all the walls indoors were charred with black soot. The boy’s father decided he would single-handedly repaint the entire inside of the house, and he used about 17 gallons of paint. The mother was away at work, and the other kids were away at school. While the father painted, the little boy was playing on the floor and just entertaining himself. Mercury vapor is heavier than air, so the dose of mercury that the boy on the floor received was much larger than the father’s dose breathing high up on the ladder. As a result, the child had florid acrodynia and a large amount of mercury in his urine. The boy’s father had a small amount of mercury in his urine, but the mother and other siblings had little mercury in their urine (https://pubmed.ncbi.nlm.nih.gov/2215577/).  This was a very fascinating case because we had no idea the amount of mercury in paint would be enough to poison a child. You might be wondering why mercury is put in paint. It was added to paint as a preservative. Our investigation documented that one particular company had added far more mercury as a preservative than was allowed by law. I approached the U.S. EPA to inform them about this little boy’s condition and shared the father’s striking video of the boy’s inability to walk. I said, “Don’t you think it’s inappropriate that a consumer product like paint can poison a child and give him acrodynia?” The EPA staff were deeply moved by the video and immediately began negotiations with the paint companies. The companies then voluntarily agreed to stop adding mercury as a preservative in paints.

Once again, this showed the power of science to influence policy. One of the most powerful things we have are the stories that emanate from the bad things that happen to children. I wish that something bad did not have to happen in order to change policy, but in my experience, change does not happen unless something bad occurs (an epidemic in a community or an unusual condition in a patient). And that often results in a study or investigation to determine why it happened.

I often wish we could put preventive measures into place without experiencing an epidemic or illness.  After all, looking at the literature, scientists already know that mercury is a health hazard. Also, people knew that mercury was being used as a preservative in paint, but they thought the amount of mercury was too small to cause harm. The problem arose when one company added too much, causing a little boy to develop acrodynia. And the single case was enough to convince the EPA to ask the paint companies to stop adding mercury to paint.

I realized as I was preparing to talk to you, that I have been involved in children’s environmental health (CEH) for forty years, before it was even considered a field. Today, we think of children’s environmental health as a sub-specialty of pediatrics, and we have some doctors who do fellowships and make their careers in children’s environmental health. It’s still not easy to make it your career, because there is little funding, and there is very little formal appreciation within academia of this as a unique discipline. But I think there has been progress.

This month Oxford University Press published the second edition of the Textbook of Children’s Environmental Health. There is demand for this book in universities and schools of public health; people are asking for up-to-date information about this topic. It’s very gratifying that children’s environmental health is now a substantial area of study.

JMK: Yes – you have literally written the book on the subject! You and Phil Landrigan, right?

RE: We did! The Textbook of Children’s Environmental Health was written with Phil Landrigan. The first edition was published in 2014. It’s intended to be used for courses in schools and programs of public health. There is an earlier book that I developed for pediatricians in the mid-1990s when I was Chair of the Committee on Environmental Health of The American Academy of Pediatrics (AAP). I noticed that physicians often had a difficult time finding information about how to recognize, treat, and prevent diseases linked to chemical exposures. The information often was buried in journals that were not carried by hospital libraries, and it wasn’t easy for clinicians to find and read the guidance they needed to treat their patients with environmental illnesses. Although the AAP put out policy statements about environmental health, pediatricians would have to sift through multiple issues of Pediatrics to find them, and for doctors who weren’t pediatricians, the information might be hard to access. And so, in 1995 I spearheaded an effort to put all this information together as a book to be published by the American Academy of Pediatrics. The first edition of Pediatric Environmental Health (the Green Book), was published in 1998. At the time, it was a landmark because at last, a pediatrician or parent could find all the advice they needed – about pesticides and mercury and air pollution and radiation – in one place. The book covered the whole gamut. It was a ground-breaking book because for the first time all the relevant information that physicians needed to know about what kinds and amounts of chemicals were clinically relevant was under one cover.

   

Figure 2: The Green Book. https://publications.aap.org/aapbooks/book/524/Pediatric-Environmental-Health

The Green Book was written with the help of dozens of pediatricians, and it was so popular that I am now leading the development of a 5th edition. In the Green Book, we describe environmental health threats on the horizon and emerging, and we give clinicians the lay of the land about what is well known and what is not fully understood about children’s health risks from hazards in the environment. This is so important because doctors need to understand that our knowledge in many areas is still incomplete. When patients ask a question about a new environmental hazard, some pediatricians used to say, “don’t worry about that,” but the answer may actually be “we don’t yet know,” and we should therefore invoke the precautionary principle. Saying “we don’t yet know” takes a lot of humility on the part of doctors.

Children are not little adults. It is wise to be cautious, because they are still growing and developing. The AAP has approved the Precautionary Principle as a policy, which was really important because the AAP’s policies are influential. Unfortunately, the US government does not follow the Precautionary Principle, even though it is followed in Europe.

I had to do some arm-twisting to get that first Green Book proposal approved by the AAP. There were concerns that this was an area that might be considered beyond the scope of pediatrics, and some uncertainty about what the response of clinicians would be to a book about pediatric environmental health. What’s particularly nice is that now, more than 25 years later, the American Academy of Pediatrics is viewed by the other clinical specialties as a leader for having brought environmental health to the table of clinical medicine. I am proud that they are in that position.

It’s been nice to see that the American College of Obstetricians and Gynecologists (ACOG) has moved forward to embrace environmental health. When I first started this work in 1995, OB/GYNs weren’t eager to have anything to do with environmental health. They worried that it was outside of their specialty area. But they listened to what the AAP had to say. In the last several years, they have recognized that environmental health is part of women’s reproductive health and that it should be part of reproductive medicine. It’s wonderful that the world is changing.

JMK: I know from my own experience trying to educate healthcare providers that it is difficult to change institutions and fields, and you must feel especially gratified that under your leadership, the AAP has been a leader in this way. So wow!

RE: I consider myself very lucky. In a career of 40 or 50 years in medicine, a person is fortunate to be able to influence one or two major changes. And so I consider myself very, very lucky to have been one of the trailblazers who witnessed dramatic change in pediatricians’ attitudes towards children’s environmental health. To be able to witness that is really wonderful.

JMK: And to have a key role in it – that’s remarkable! We don't get that many wins, but it also shows that wins are possible. I always use the tobacco example. And I want to say, especially as a parent, I'm so grateful to you for the work you've done. It's just incredible.

I had a couple of follow-up questions particularly about the little boy with mercury poisoning. Did you ever find out what happened with him? Did he recover at all?

RE: The little boy recovered! With many acute poisonings (carbon monoxide and mercury vapor for example), as soon as you remove the child from the exposure, if the child is able to excrete it from the body, the child can recover. This little boy was hospitalized for four or five days while the diagnostic work-up was going on, and we were measuring his urine mercury levels and doing the investigations, but then he was released from the hospital and did well, and he is normal now.

JMK: That is amazing! And then, were you at the CDC at the same time as Dick Jackson?

RE: I arrived at CDC in 1985. Dick Jackson came later – in 1994. When I joined the CDC, the Center for Environmental Health had a director named Dr. Vernon Houk. I have to credit him with giving me an unusual amount of freedom. I was deeply interested in tobacco, and he said, “What do we need to do?” I said, “We need to put a measurement for tobacco exposure into the National Health and Nutrition Examination and Survey (NHANES) because unless it’s there, we won’t be able to track it and find out how we are doing as a nation in controlling tobacco use.” He said, “Okay – do it.” Dr. Houk allowed me to write the first proposal to include cotinine measurements in NHANES, and CDC promptly approved my proposal and funded it. Cotinine measurements have been included in every NHANES survey since NHANES III (1988-1994). This biomarker has allowed scientists to study so many other outcomes of tobacco exposure. We have deepened our understanding of many adverse outcomes besides just pulmonary diseases like asthma; now we understand the link between many cancers and passive smoking. We also know ear infections are associated with tobacco smoke exposure. Having the measure in NHANES opened up a wide array of possibilities to explore the many ways that tobacco smoke exposure can affect the different systems of the body.

Vernon Houk was really great about providing autonomy to me as a young epidemiologist. There is something to be said for bosses who give you complete freedom to just do what needs to be done. After almost forty years working in governmental and inter-governmental organizations, I’m finding that that kind of boss doesn’t exist much anymore. And it’s sad because these days, at least in many places, young scientists are severely restricted in what they can do. And there are many political no-no’s – topics you cannot touch. In my early years at CDC, being given independence was a real gift.

JMK: That is really inspiring. When I think about cotinine, I always think about the success story that has subsequently been told by the data, that levels have improved with changed policy. It's incredible that you have had so much to do with it, to see that you can make such a difference. I think sometimes people get fatalistic and feel that, well, this is the way it's always been – this is way it will always be – we can't change things. It seems really important to have these positive stories, although, as you say, wouldn't it be better if we could have used the precautionary principle, and just not poisoned that little boy, and many, many others.

RE: Change is not always easy – I would not want anyone to come away thinking it is always easy. I have been battling to get public health officials to understand the hazards to infants from indoor mold for more than twenty years. On that issue, I have encountered huge resistance from powerful vested interests. I’m convinced we will prevail in the end. It takes great perseverance.

In the 1990s I led studies at CDC that documented that some babies in Cleveland, primarily infants of African American parents who lived in very water-damaged homes, developed lung bleeding, and about 10% of them died. The toxigenic mold Stachybotrys and other fungi were found in the water-damaged homes. Invoking the precautionary principle, my co-investigators and I have cautioned parents that infants should not live in moldy environments. In addition to infant lung bleeding, mold is linked to developmental disabilities, asthma, and many other lung diseases. So there are lots of reasons to ensure that infants live in dry, non-moldy homes. But the public has been told a different story by powerful vested interests who manufactured doubt about our research findings. The doubters contended that people don’t need to worry about mold, because it’s just a household nuisance. During this post-truth era, I believe it’s more essential than ever for public health professionals to provide the correct information to young parents and to follow the precautionary principle.

Mold in the home has been clearly linked to socioeconomic status.  It is often a problem for people who don’t have a lot of money, such as young mothers living in rental properties where the landlord doesn’t do adequate remediation after a flood (https://pubmed.ncbi.nlm.nih.gov/37422317/). With global climate change, more and more people are experiencing flooding. Residents are experiencing the devasting effects of floods; they may find that their furniture and wallboard and books and papers are damp and need to be dried out. Those who aren’t wealthy may keep some of those water-damaged items and continue to live in water-damaged parts of the home if the landlord refuses to fix it.

There is an urgent need to change the current narrative espoused by special interests. It is important to remove babies from moldy, water-damaged environments. Once a baby is about a year and a half old, the risk of pulmonary hemorrhage appears to go down, though it doesn’t disappear completely. The potent toxins from mold act much like radiation – targeting the rapidly growing cells of infant lungs. These mold toxins are radio-mimetic, which basically means they mimic radiation. That’s why I am so concerned. Doctors know about the effects of radiation on the rapidly growing cells of the young infant. Infants who develop acute lung bleeding in moldy homes may die if sent back to the home environment after hospitalization. Parents who notice that their baby has a little blood coming out of their nose or mouth should understand that this can be life-threatening. They should first seek emergency care and then stay with a relative or friend or babysitter until the mold is cleaned up.

JMK: Wow!

RE: In the early years, the insurance industry faced many lawsuits about mold. Home insurance policies were changed to remove coverage for mold in recent years. The insurance companies were paying large settlements to people who developed health problems such as autoimmune diseases or cancer. The US government itself never put in place a good prevention effort. There was such shocking indifference at the CDC to the problem of infant pulmonary hemorrhage in the 1990’s. A leader at CDC actually told me, “it’s just a few black babies,” and so “why are you so worried about it?” As someone who was deeply concerned about environmental injustice (EJ), I was appalled to hear that. CDC then started to disseminate misinformation.  This is a good example of an environmental justice battle that is still being fought.

Of course, by its very nature, environmental health involves David-and-Goliath battles. Rarely is an industry pleased to read the results of an epidemiologic study that implicates them or one of their products. The industry almost always has more power and money and personnel – and often has the upper hand in crafting the resulting narrative (storytelling). Industry spokespeople can say, “These scientists are out on a limb. They are exaggerating the risks; this study has flaws and is not really convincing.” Some public health students have told me they don’t want to go into environmental health because they don’t want to be in David-and-Goliath fights all their lives. Part of me can understand that, but having been in these David-and-Goliath fights for forty years, I have seen that we can win them. It takes time, and it takes solidarity.

I find it heartening that despite its degree of difficulty, students are still entering the children’s environmental health field. Moreover, the community of people who care about children’s environmental health now includes people from all over the world. It used to be that this was just something wealthy Americans thought about, and now people from many continents are engaged in moving the field of children’s environmental health forward.

The AAP Green Book has been translated into Mandarin, and now it’s available to millions of Chinese pediatricians. As a result of industrialization in China, pediatricians there are encountering childhood problems linked to severe air pollution and contaminated water. The Mandarin version of the Green Book provides them with the information from the scientific investigations conducted in the countries who went through industrialization earlier. Chinese clinicians will have the benefit of learning some of the things American pediatricians have learned after our period of industrialization from the 1950s to the 2000s. The Green Book offers solidarity with lots of people who are concerned about the effects of environmental contamination on child health.

When I led the children’s environmental health activities at the World Health Organization (WHO), I developed a program to harmonize birth cohorts from different parts of the world to study child health and the environment. In the US, for a short period of time, we had plan for a National Children’s Study, but it was discontinued. Investigators doing studies in Japan, China, Korea, Taiwan, Germany, and France worked to harmonize measures and questions in order to make it possible to eventually pool data. This is important, because even in a large study, some outcomes, such as childhood cancer, are quite rare, so there are few occurrences. With these efforts to harmonize data, we may be able to look at things like environmental exposures linked to childhood cancer from an international perspective, pooling data from many countries. And that’s very exciting. It’s unfortunate that the US has lost its leadership on birth cohort studies, but other countries have taken up the baton, and hopefully, their studies will enhance our knowledge about the risks to children’s health and development from exposure to chemicals in the environment.

JMK: Well, and that loss of US leadership is true in many areas of environmental work, right? That's also part of the David-and-Goliath fight. This is all so rich and interesting – wonderful stories.

So I don't know how much you are willing to talk about it, but I know you got the Herb Needleman Award because of what happened when you were head of OCHP at the EPA under Trump. They came after you because you were speaking up, and that must have been very, very difficult.

RE: It’s very difficult when you come face-to-face with powerful forces that do not want things to change. At EPA, I encountered resistance to my plan for comprehensive prevention of all sources of lead exposure to children. EPA had historically been very Balkanized – the people in the Office of Water were concerned just about lead in water; people in the Office in Land and Emergency Management looked just at the amount of lead in Superfund sites. And the people in the Office of Air just looked only at lead from small aircraft.

I had no idea the opposition I would face just by simply pointing out that a child is unifying all these exposures into one little body, and the EPA as an organization needs to look at all these sources of exposure together and eliminate them all. That seemed to be heresy!

This was during the Trump Administration. I thought that lead poisoning prevention would be timely and important. I now understand that the Trump Administration was not inclined to do anything that would inconvenience polluting industries. I became the fall guy for their unwillingness to inconvenience the industry. It was very painful. I found myself on administrative leave and reading Ibsen – An Enemy of the People – again. When you become the enemy of the people, you get ostracized. Sometimes that is the price you pay for shining a light on something that powerful forces don’t want to do or don’t want revealed. It’s the price we pay for working in environmental health. So we take the wins, and we also take the losses. Sometimes you can’t get a decision maker to make a decision that favors child health, but that doesn’t mean you should stop. You have to come back another day, and keep fighting for what’s best for children.

JMK: I think that is really hard. As you said about your students, not everyone necessarily wants that to be their life. It's a portrait in courage. You're still fighting, but, as you said, what else are you going to do? Once you're convinced, you know how important these things are, and you can't just stop. Unfortunately, I learned this in the hardest way possible. I really appreciate everything you have done.

But I was going to ask, did you know Herb Needleman?

RE: Oh sure! When I was a very young epidemiologist working at CDC, I got appointed to the AAP Committee on Environmental Health, and Herb Needleman was on the committee. Herb and I got to be good friends. He was one of these generous spirits who would take young scientists under his wing and help them. When I would run into a scientific dilemma, I would call him up, and he would give me wise advice. I would look to Dr. Needleman for advice because not only was he a pediatrician; he was also a psychiatrist – and he understood better than most the fragility of the scientific enterprise.

And of course, his own work was also attacked, and so when vested interests were attacking our scientific findings on mold toxins and infant lung bleeding, he was extremely helpful to me. He encouraged me to remember to keep an historical perspective. New ideas, he said, always come under intense scrutiny and sometimes under attack, especially when there is money at stake. He inspired me to look deeper at all the special interests that would suffer if people became concerned about the health effects of living in water-damaged moldy homes. He died in 2016. He was an important role model for me as a young scientist.

JMK: Wow! That's wonderful. I wish I could have met him.

You've already talked about some of my other questions, but here's a good one. It's very tough to raise kids in a world where every child is born exposed to toxic environmental chemicals, from conception onwards. And so I think there can be a lot of guilt and fear. At the same time, understanding is essential to prevention. You are a pediatrician. How do you present this to parents?

RE: I think the key thing I like to help parents understand is that in the old days, we used to believe that it was primarily “germs” that caused disease – the measles virus, for example. And when that virus got into your body, you were going to get measles. But we now understand that it’s not as simple as that. There is no unifactorial disease. It’s not only the measles virus, but the environment in which you encounter the virus, and the environment in which the child lives, and the child’s immune system. Every risk is multiplied by exposure to environmental hazards.

So rather than thinking about diseases as being caused by just by one thing – viruses or bacteria – parents should think about a healthy environment that makes a child resilient with a healthy immune system. So when a COVID virus or the measles virus, or a meningococcal bacterium enters the picture, the child will have the best possible chance of fighting it. The more we can reduce all these exogenous chemicals and hazards, the healthier the immune system that child will have.

What can paralyze people is that there are thousands of chemicals in our environment. How do I deal with them all? Instead, let’s think of the goal: clean water and clean air and clean food. Let’s encourage governments to do their jobs – which is to be responsible for clean water and clean air and clean food – to ensure that all those things are safe, so it won’t be up to individual parents or consumers. Our best efforts are to get the government to take action on these things and not require parents to take it upon ourselves. We shouldn’t have to read labels to see how much high-fructose corn syrup is in something. We should expect that the government won’t allow hazardous substances in things that children eat.

JMK: And of course that has worked in some cases that we are talking about. I think you're right. If people think about it, they realize these aren't things that individuals can really do by themselves. The problems were not caused just by individuals. Of course, that runs completely counter to our national mythology of self-starters and pulling yourself up by the bootstraps and survival of the fittest. I think that's one reason people are so averse to regulation. And we have this highly polarized political structure. Some people think there is no problem, and then other people are paralyzed with fear because they do understand how bad microplastics are, just for example, as they are watching more bad news come out every day.

RE: Remember in the 1970s – there were thousands and thousands of people who came out on Earth Day – there was a huge amount of solidarity. We seem to have lost much of that solidarity. These days there are fewer people in the streets on Earth Day. The chemical industry is producing so many different complex pollutants with so many different complex names and uses that nobody can keep track of it all. There are parents who care deeply about reducing endocrine disrupting chemicals (EDCs), others who care deeply about eliminating a certain pesticide, and others who care deeply about reducing exposures to ozone. But we need people to work together to decrease all environmental contaminants, just like they did in the 70s on Earth Day.

Figure 3: People Gathered on Earth Day. https://www.earthday.org/history/

The polluting industries may prefer to divide us. They would rather have environmentalists fighting a hundred different fires because if you are fighting a hundred different fires, then you can’t pay too much attention to any one. We’ve been sucked into this chemical-by-chemical approach. I don’t think any of us realized. We are so compartmentalized. How do we get that solidarity back? At the EPA, they started to undertake separate risk assessments for each of the perfluoroalkylated substances (PFAS). With each assessment taking two to three years, you can never get them all done. We need to take back the story because the story should be that air, water, and food should be clean.

JMK: Well, I hope if I can just get the book contract, I will play my part in that.

I really look forward to telling your framing of this, and I hope many others’ too. There are so many similarities in how you experts answer these questions, and of course I'm picking from the top of the field. It is interesting, though, what you said about the balkanization and the idea that the problem is fragmented, which makes it harder to solve.

I definitely see the industry has done this. But also, I wonder – it seems somewhat inherent in the nature of modern science. So many of our problems we have indeed solved by breaking them into smaller and smaller problems. And then it's hard to go back from that. Scientists spend so much time becoming experts in one little area. And then how do you learn to zoom back out? I think that could be hard.

That would be a good segue to my next question, which is, if you could single-handedly recreate US policy on environmental chemicals, what would it look like? You've already at least partially answered this question – that we would focus on clean water, air, food, and soil, but do you have anything to add to that? What can ordinary citizens do to help?

RE: Historically, the EPA was created by pulling together parts of many different agencies. There are still different fiefdoms that face barriers to working together.

I see some real hope in what the youth are doing about the climate crisis. One good thing about the awful climate crisis is that it’s been a great unifier of people who are concerned about the environment and health. It’s brought people from all walks in life together the way it was back in the 1970s, when there were millions of people concerned about the big picture of our earth’s pollution. Some of that same spirit has been revived in the face of climate change.

Climate change has towered over all other environmental problems, but we shouldn’t forget that we still have to work to eliminate problems like childhood lead poisoning and pesticide poisoning. But the climate crisis has enlightened so many young people about the importance of a safe environment for future generations. These are the cadre of people who will become the scientists and the great authors and the Nobel laureates of the next generations. They will have environmental consciousness as part of their DNA. In the 1970s, I learned that environmental issues were important, but as a five-year-old, I was not thinking about the environment at all. Now, there are five-year-olds thinking about the environment. Just as they grew up with computers and can do so much more with computers than I can, so they are growing up with concern about the environment in their DNA. They will probably make much greater strides than we will just because it comes so naturally to them.

It will be our salvation if we can get people to work together to solve today’s environmental problems.  It’s clear that many people care. But there are powerful forces opposing real change. Even in the Biden Administration, which wanted to make real change, they are already stepping back from some of their most audacious promises on the climate crisis. Now that there is a wide-awake generation of born environmentalists, they are going to have to take on this work in order to achieve a healthy future for the generations to come. And when they achieve that, I think they will also then realize all the other things that will come along with it because they will appreciate that you can’t have toys with lead paint, pesticides in food, flooded homes with mold on the walls. And so all these things will get solved when we achieve the win over the climate crisis. We are making progress. I understand that in one day recently, there were so many solar panels being placed on roofs around the world that it was equivalent to the energy output of one nuclear reactor. And that indicates change is coming.

I've always looked at the glass as half-full. I am an incurable optimist. There are days when I feel pessimistic, but when I get down, then it is very hard to continue. So I have to look at the world through rose-colored glasses, and it gladdens my soul to see all of these solar panels and all of these positive changes happening, even though they're not always happening here in the United States, and I take that as an indication that humanity is committed to win the climate battle. And we're committed to win these other environmental battles, because the young environmentalists will not put up with this contaminated world that we put up with because we were hoodwinked into thinking pollution was required for progress. Little did we know.

Today’s youth grow up knowing all of these things, and so they'll ensure that that generation that survives the climate crisis won't be poisoning their children with water contaminated with perflouroalkylated substances (PFAS) and won't be poisoning their children with pesticides in their food and pollutants in their air. So I think it'll all come together. But it means we have to win the climate fight, because if we lose the climate fight, we lose it all.

JMK: Right?! That is very quotable and very true. I think a lot of people see it that way.

You've already answered my next question about the status of children's health in 2050, and I think that I picked that year because a lot of people see that year as an indicator for climate change. Truly, all of these problems are coming from fossil fuel use, whether we're burning it or shaping it into plastics and other toxic products.

So I would love to share your optimistic viewpoint. I suppose we all are a little dichotomous on that. We have our good days and our bad days.

RE: That's the thing: when you're fighting and fighting, you've got to be optimistic, because if you are pessimistic, the fight stops – so there is no choice but to be positive.

By 2050, I think we will see a full-fledged sub-specialty of pediatric environmental health. We’ve been working towards that for more than thirty years, and I think we are finally getting some traction. When we first considered the requirements of the American Board of Medical Specialties, we realized that there were only about twenty-five to fifty pediatricians in the United States who were specialists in children’s environmental health. That was too few for a new sub-specialty. It’s too expensive to write a certifying examination for only twenty-five or fifty examinees. But now there are an estimated 500 people who consider children’s environmental health their specialty. I hope that by 2050, there will be the possibility for both nurses and doctors to be certified in children’s environmental health.

And why is this important? It’s important because a newly minted doctor can rarely get a job in academia unless they are trained in a specialty area. Universities have departments of cardiology and specialty certifying exams in cardiology and departments of rheumatology and specialty exams in rheumatology. And so a certification in children’s environmental health will open the door to people in nursing and in medicine, so they can get a position in a nursing school or medical school. That’s important because, depending on where a student receives their training, they may learn almost nothing about environmental health if there isn’t a faculty member who is deeply passionate about teaching environmental health.

The other thing that I think will happen is that the results of the ongoing birth cohort studies in China and Japan and all over the world will become available. With those findings, we will be able to better understand the prenatal antecedents of disease. We will understand so much more about childhood cancer, asthma, and the neurodevelopment diseases. We will understand that outcomes are influenced by prenatal exposures of both moms and dads. We will need to offer extensive guidance before pregnancy in order to help people live in healthy environments. If the government steps up and does its job, it would ensure that people have clean air, water, and food. Of course, that depends on political choices we make.

I certainly hope we, as a country, will make choices that empower our government to do what is necessary to make our environment healthy. By 2050, the Government could help us win the climate battle, the major battle that will decide everything.

JMK: From your mouth to God’s ear!

It's hard to understand how people can do otherwise. But I think people get into their media bubbles, and it’s really like the physicians who are being educated with no training in environmental health. Some people just don't hear anything about this. I know you do everything you can to get the word out.

RE: We try, yes.

JMK: So last couple of questions: one is, do you have any recommendations for me? I have already talked to twenty-two experts, wonderful people. Some of them are already on my blog, some I'm just keeping for the book. But is there anyone else, either practitioners or experts or scientists – or even if you know parents who are activists, is there anybody you think I really should talk to?

RE: So tell me about what kind of parent stories you're looking at.

JMK: I have my story with my daughter – and so there's cancer. I have a good story on autism. But outcomes like birth defects, asthma, autoimmune disease – I have some leads on these, but I've been working on this project for a while, and I'm also looking for fresh voices.

RE: I can go back through email messages I received from parents. Let me go through and see what I can compile for you. I think parents’ stories are so crucial.

JMK: That would be wonderful. Thank you so much!

RE: Let me know if I can help. I think that storytelling is powerful.

JMK: I hope so. And I really think the magic formula is hearing both from parents and from experts. I've always felt grateful for the people like you writing these papers. You were the only champions I found as a parent looking to see what caused my child's cancer. There was not that much written, at the time, and I was very grateful that at least some scientists were doing this work and paying attention to this crisis.

RE: Some parents tell me that it is difficult for them to get a response to their environmental concerns. I understand that some parents reach out, but they can't find a knowledgeable professional to talk with. Parents are always so surprised when I write back in response to their e-mail messages. Sometimes it takes me a while because I get a lot of email messages. But when I write back, they're appreciative. I’ve been told, “Oh, nobody would talk to me,” because some professionals are dismissive of environmental concerns. Parents have said “They call us kooks, and it's so hard to become a kook.”

JMK: I’ve been called a kook. When my child was sick, I had very substantial evidence that her illness was linked to these exposures that we know we had. But yes, it is very hard to be called a kook. People would look to my former husband, tellingly, who is a chemical engineer, but he had taken one biology class. I'm the one who had a pre-medical background and who also had done the homework on this. And of course, I wouldn't be surprised if there's a little sexism there. There are a lot of us in public health, and pediatrics too, who are women.

RE: Oh yes!

JMK: And yet often, it's the mothers of dead children who are making the difference.

RE: It's almost always the mothers. I have very rarely found a father who campaigns – although there are a few. But you are right. Women are not listened to. There is so much sexism that still exists. We haven’t won that battle either.

JMK: No. No. But we persist.

RE: What keeps us going is the solidarity. I believe one of the most important things we should do is support one another because the only way we are going to get through this, like any social crisis – this is an environmental crisis – is with a social movement. And we build a movement with our storytelling. That’s what you are doing. Movements don’t come out of nowhere – they come out of stories. I think by doing this, you’re helping to build a movement that will make social change possible. It’s the only that that ever has, you know.

JMK: I couldn’t agree more with you and with that famous Margaret Mead quote.

 

RE: Exactly!

JMK: I have to say, all the people I have met through the APHA CEH group and through all the children's environmental health groups – what amazing people this subject gathers together! There is a lot of inspiration to be found in this community. And I'm trying to hit that note strongly in the book project and on the blog. There are inspiring stories, and they are to be found not in hero worship of celebrities and sports stars, but in the stories of scientists and everyday people who are working for the common good – and you are one of them.

RE: Making those connections between parents and the scientists who can try to answer some of the research questions is very important. The parents can answer some of them themselves. Another thing that should happen more often is a parent bringing an idea and planting that research question in a place staffed with scientists who can try to answer it. Real excitement comes when you can make that connection, and the sparks fly, and more understanding results. And they might not always be the answers we expect. When we undertook our studies of infant lung bleeding some of the people in the community were initially thinking it was a result of exposures to pesticides. We did extensive measurements of many contaminants, including pesticides, but then, in the end, the culprit was not pesticides after all, it turned out to be mold. Scientific studies don’t always show us what we think we are looking for.

JMK: Absolutely. That is very, very true.

RE: Let me know how I can help as you move forward.

JMK: Thank you so much!

Last question: is there anything that you wanted to ask me about the project or about my experiences?

RE: Tell me more about your struggle with your daughter.

JMK: It was really hard. I had known I had been exposed to pesticides and had acute symptoms of chlorpyrifos exposure before she was conceived. And at the time I thought as long as I we moved and I was super careful during my pregnancy, she would be okay. Only years later, I found out that that pre-conception exposure really was a risk for her. And then, at four, when she was diagnosed with leukemia, right away, I thought of those exposures. Well, come to find out, our town had also been spraying chlorpyrifos for mosquitos her entire life. We always left the windows open for fresh air, and one night we heard the spraying, and we put things together. But we didn't find that out until after her first bone-marrow transplant.

And then I realized, oh my God! This thing that I thought may have caused it – she has been exposed this whole time. The timing of the acute exposures made sense with her diagnosis and relapses – not that I think it's a single-factor etiology. She also had x-rays at an important juncture.

But I really have every reason to believe that her cancer was caused by these exposures. My son also had learning disabilities and other mysterious illnesses, symptoms of a low immune system – and I lost thyroid function – all kinds of health effects from these exposures, which for various reasons beyond our control were really intense and terrible.

So even before she died, when we realized this was happening, I became a local activist, and I went to my city council and told them that I thought they were killing my daughter, and that I wish they would stop.

She went with me in her stroller, sick though she was. We distributed pamphlets all over town, and we got it stopped in our town. And then, after she died, I just kept going. I addressed lawn chemicals in my town, and then I began to act more regionally. We sent letters to every municipality in our county with an annotated bibliography of the research and a little intro saying they might need to know this. And the mosquito-spraying company threatened to sue us for libel and slander.

RE: I know about that.

JMK: Right? So I know what it's like to be called the kook and the troublemaker and told I was trying to go after their business. They said they were only looking after human health by spraying for mosquitoes.

Then I realized that especially if I wanted to write this book, I needed additional credentials, and that's why I did the MPH, which at the time seemed a little bit of a lark, a little crazy to be doing while I was a full-time Professor in a completely different discipline, though I did have the science background as well.

At Benedictine, I could do it a couple of courses at a time and got to enjoy being in my own colleagues’ classes. That was fun. And then I cold-emailed Susan Buchanan at UIC, and she agreed to supervise my internship, and she put me in touch with all of you!

RE: How do you like that!

JMK: It has just snowballed. It's been such a pleasure. And so I've been doing two jobs for about twenty years now. But this one especially just means everything to me. So it's definitely worth the work.

RE: Oh, that's a wonderful story.

JMK: Thank you!

RE: It’s interesting you made those connections with Susan at the Pediatric Environmental Health Specialty Unit. Did your own doctors consult her about your daughter’s case?

JMK: No, they didn't, but I am just grateful in retrospect that most of her main doctors were not dismissive. It was interesting. Her transplant doctor was a little dismissive, and I think he was just very narrowly trained, though a wonderful person and an excellent physician. But her two main doctors nodded their heads and said, yes, it is plausible that this is related, and they agreed to test my breastmilk because at the time of her diagnosis, I was still breastfeeding my younger son.

RE: It's good, because so many people’s environmental concerns seem to be just dismissed.

JMK: They were wonderful. And that makes a huge difference for parents. It's a horrible thing to go through, but if you then have to fight on two fronts, where you're also just trying to be heard…. I think they also respected that I was a professor and had done the research right.

There are a lot of great people out there. And I think you're right that if we can have enough solidarity among the people of good conscience, maybe bring more people on board, we can beat Goliath.

RE: Yes. We have to get more clinicians on board understanding that environmental health is part of medicine. That's why the young people of today give me such hope – because they have that understanding.

JMK: Thank you so much for your time and for everything you have done, Ruth. I really, really appreciate it.

RE: It's always a pleasure to talk. Whenever we talk, my spirits are buoyed.  I want to show solidarity and help make the next generation successful.

JMK: I agree. And I'll tell you, our young members of APHA and the twelve other students in the EDC seminar were incredible, amazing people! They're the next generation, too.

It’s something to be hopeful for. Well, thank you so much. I hope you weather the heat well.

RE: Yes, so far so good! And happy Juneteenth!

JMK: Yes – happy Juneteenth!