Speaker 1: You are listening to Love Maine Radio, hosted by Dr. Lisa Belisle, and recorded at the studios of Maine Magazine in Portland. Dr. Lisa Belisle is a writer and physician who practices family medicine and acupuncture in Brunswick, Maine. Show summaries are available at lovemaineradio.com. Here are some highlights from this week’s program.
Elissa Chesler: I discovered that as a scientist I’d have greater impact in the lab than in the clinic, but it’s always been with me that everything that I’m doing in the lab has this much broader reach to the whole world around that patient and around the society that’s involved in their condition and how it’s treated.
Ann Lee Hussey: In some of the really remote regions that we go to, we’ve actually brought health care to them for the first time. Children would die. I was in Mali once and this really hit home to me. They don’t even name their children until the child is at least a year old because they just want to make sure that the child’s going to live.
Dr. Lisa Belisle: This is Dr. Lisa Belisle and you are listening to Love Maine Radio, show number 285, Investigating Addiction and Preventing Polio, airing for the first time on Sunday, March 5, 2017. We humans have been plagued by disease, both infectious and environmental, since we began life on this planet. Today we discuss two very different diseases with individuals who are working to mitigate them. Scientists Dr. Elissa Chesler and Dr. Vivek Kumar are studying addiction at the Jackson Laboratory in Bar Harbor. Ann Lee Hussey, herself a polio survivor, has traveled the world immunizing people against polio and other vaccine preventable diseases. Thank you for joining us.
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Dr. Lisa Belisle: Today it is my great pleasure to have with me Dr. Elissa Chesler who is an associate professor at the Jackson Laboratory in Bar Harbor and director of the lab’s Center for Systems Neurogenetics of Addiction. She studies disease complexity and behavioral science with an emphasis on the genetic and genomic analysis of alcohol and substance use disorders. Also I have with me Dr. Vivek Kumar who is an assistant professor at the Jackson Laboratory and who studies the genetics of addiction. Thanks so much for coming in today.
Vivek Kumar: You’re welcome.
Elissa Chesler: Thank you.
Dr. Lisa Belisle: I know it was kind of a long travel down here from the Jackson Lab to Portland, so it’s a big deal that we have you here, and not only for that reason but also because the NIH gave you a large grant back in the summer, $11.7 million, I believe?
Elissa Chesler: Yeah, that was our Center for Systems Neurogenetics of Addiction. That gives us a lot of opportunity to bring investigators in to use new research resources and tools and approaches at the Jackson Lab to study addiction-related behaviors across lots of different areas of addiction.
Dr. Lisa Belisle: For you it’s also been important to have conversations out in the general public about addiction. I know Dr. Kumar that you actually gave a Ted Talk on the subject.
Vivek Kumar: Yeah, I did.
Dr. Lisa Belisle: Tell me a little bit about that and why is it important for you to be doing this with those of us in the general community?
Vivek Kumar: My advocacy started because I read an op-ed piece that was published in the Bangor Daily News about a woman named Colleen Singer. She died less than 40 miles from where I live, mainly because she didn’t get the care and the treatment that she needed. It really was a failing at a societal level, at a medical level to provide the proper treatment, I felt, and I was doing fundamental research in basic biology of addiction, but obviously there is a huge gap in terms of what we know scientifically and what is implemented at the policy level, at the state level, and at the society level.
I made it a mission to go out and talk about this disease, to fill this void, this gap. I talk about addiction as a chronic disease, addiction should be treated in a longterm basis much like diabetes, much like hypertension, and I talk about the etiology of addiction, the treatment of addiction and the changing of mindset from a moral failure to one that is more of a chronic disease that anyone could be vulnerable to and anyone could have, just like diabetes or hypertension.
Dr. Lisa Belisle: It’s my understanding that the Jackson Laboratory is really trying to do this in many areas, to cross that bridge between fundamental bench science and public health and clinical work. Is this something you’ve been interested in for a long time as well, Dr. Chesler?
Elissa Chesler: Absolutely. I think in a lot of ways as researchers we try to solve the real problems underlying the disease, the mechanisms, the discovery of new treatments, new cures, using the genome to find those treatments. At the end of the day, there’s so much more infrastructure around disease, delivering health care, and also understanding disease. For me it’s been in my education. I was originally actually an MD-PhD student. I discovered as a scientist I’d have greater impact in the lab than in the clinic. It’s always been with me that everything that I’m doing in the lab has this much broader reach to the whole world around that patient and around the society that’s involved in their condition and how it’s treated.
Vivek Kumar: I think all scientists need to get out of the lab and convey what they’re doing to the public. They get a huge amount of money from the National Institute of Health to do fundamental research, but if we don’t convey what we’re doing back to society and we don’t get involved in debates that are going on in our community, then it hurts science overall. We end up with people that don’t believe in global warming, we end up with people that doubt something that’s as fundamental as evolution, and it affects our kids, and it affects the next generation.
We’ve got to, as scientists, we’ve got to get out there, no matter what we work on, we’ve got to get out there and talk about what we’re working on and how it affects society.
Elissa Chesler: I also think in the area of addiction in particular, unlike any other disease, we tend to treat most diseases with drugs and medical interventions, but with addiction there’s a lot that comes to the individual from understanding the process of becoming addicted, for the family of understanding the experience of an addiction, and so any education that we can do about what the disease really entails might actually have an immediate therapeutic benefit. When we can understand the differences in different mice even, in terms of their tendency to ingest alcohol or self administer a drug, we’re saying that biology is playing a role in whether or not someone is likely to start using a substance, to compulsively use that substance, and have difficulty stopping using that substance.
When we can see that in mice, it helps us actually have at least for me a lot more compassion for people with the condition, a lot more understanding of this isn’t something that a person has decided, necessarily, to do. There’s some decision-making process going on, but there’s a tendency to make those decisions and a tendency for those processes to become hard-wired in certain individuals. Understanding that biology, understanding how that change takes place from experimenting with drugs to using them compulsively, I think, can help people understand when they’re starting to have trouble with that drug use and need to start thinking about or seeking help.
Dr. Lisa Belisle: When you decide to go into science it’s pretty early on that you start developing interest in a field. For each of you I’m sure there was a turning point where you decided, I think addiction is what I want to work on. Can you describe that for me?
Vivek Kumar: Yeah, absolutely. I come from the field of addiction from a very molecular area. My training was really molecular biology: my PhD was studying how genes turn on and genes turn off. When I was looking for postdoctoral fellowship, I was trying to decide what field I should go into, and then it turns out that behavior, we actually know very little about the molecular basis and the genetic basis of complex behavior. I felt it was a black box, and there’s a lot of discoveries that could be made.
I kind of picked as what are the big problems for the next 20, 30 years, and this in my opinion is one of them. Tom Insel, who used to be the head of NIMH, the National Institute of Mental Health, has this great slide where he looks at the past 50 years and mortality from different diseases. If you look at cancer mortality, it’s decreased significantly over 50 years. If you look at mortality due to mental illness such as suicide, it’s pretty much completely flat.
There is a huge amount of work that needs to be done. We need to understand the molecular, the genetic basis of these complex disorders. That’s the reason I got into the field.
Elissa Chesler: Have you ever seen a duck have a messy landing on the water with a lot of splashing and everything? I went into college, and I wasn’t sure exactly what I wanted to do. I started taking my science courses, and I took a biological psychology course, and it fundamentally changed the direction that I was pursuing. I think I wanted to do journalism actually.
Between that and this course I took in probability and statistics, I learned a lot about how we know things, how we come to know things, but also what a scientific discovery is, how we contribute to science and how the brain supports behavior, how the brain can be changed in response to experience, but also that there is this biology underlying all behavior, and that truly fascinated me. I went on to pursue an MD-PhD. I was really inspired by Oliver Sacks and reading Awakenings. I really wanted to go in the clinic and do some research and fix people.
Not necessarily fix them, but I was inspired by the cross talk between the clinic and the lab. Ultimately one thing leads to another in a career path, I think, and I just became so amazed by the tremendous opportunity to apply computation to biology and especially in the area of behavior where we have often trouble, we all know what blood pressure is. We can all measure blood pressure, but how do we measure behavior, or addiction, or depression. It’s a much more complicated problem. I was inspired by the ability to use computation to understand those things and certain new techniques in genetics that would allow us to do that in a really impressive way.
Between those two things and pursuing one opportunity after another, I really got involved in the issues around behavioral complexity. I’ve come to know a lot of people who suffer from alcoholism and addiction, and when I realized the synergies between what I can do in my lab and what’s going on in their lives, and the relationships among what we’re learning and what they’ve experienced, it’s all come together for me. I’ve just landed in this area and I’m really pleased that I am because I think it is work that has real meaning and real importance to me.
Dr. Lisa Belisle: Dr. Kumar, what are you on a day to day basis, what are you actually doing with addiction and from what I understand, mice, and that’s what Jackson Lab is known for?
Vivek Kumar: Your audience may wonder, how do you study something as complex as addiction in mice, but it turns out mice are a wonderful system to model complex diseases. Their brain structure is very similar to humans. Obviously it’s much smaller, but all the relevant regions are there, all the relevant cell types are there. Genetically we’re very similar. We share most of our genes with mice. We can have, we can put mice, and we can have very complex behavioral paradigms with mice, something that we can’t really do in humans. We can control their environment from before birth until the end of the experience.
My lab uses the classical, what’s known as forward genetic approaches. Forward genetics essentially means you take something that’s completely normal and you try and break it. We take a normal mouse, and we use mutagens to create random mutations and then we ask, what are the genes that are mutated that lead to abnormal behavior? We can use something like cocaine response, which is a locomotor, so mice run around, just like humans get hyperactive when they’re given a psychoactive drug. We use this approach.
It’s very like going back to 1950s and 60s with Seymour Benzer, which is the idea that you take something normal, you break it, and then you find what’s broken, and that gives you a clue as to how that system is actually functioning.
Dr. Lisa Belisle: I was interested when I was reading about the grant that your laboratory received, to hear that you were hoping to go beyond just treatment of addiction and really were hoping to get to a place of possibly preventing addiction. I think Dr. Chesler, maybe, they were quoting you, and you were saying that were certain traits that we look for that go along with addiction. If you can identify those traits earlier on in a person or a family, maybe something can be done before the person gets to the place where they need treatment.
Elissa Chesler: It may be possible, but we also have to keep in mind that people have understood that this is a disease that runs in families, and they’ve understood that for a long time. Most people do not need a genetic test to know, for example, that alcoholism’s been in their family for five or six generations. I think, for us, if we can understand, predict, characterize, traits like impulsivity, traits like sensation seeking, those people that really want to go out and take risks and do interesting things, those are really god qualities, but at the same time they may lead to some vulnerabilities.
The question is, does that help us when it comes time to think about prescribing drugs for pain or looking at understanding more broadly a pattern of behaviors, how we might intervene in schools or generally in development, and yet we want to be careful because these are natural traits, these are normal variation among people, and it’s only when stress, environment, drugs, and biology come together that this abnormal process starts tolling.
The question is, how do we predict it? How do we use that information without actually derailing someone’s creativity and opportunity and potential, but really to help people understand themselves better so that maybe the insight may come, oh wait, I should probably avoid this or this is getting out of hand. The earlier that happens, the more reversible the changes of addiction are.
Vivek Kumar: There are four traits that are known to be predictors in teenagers, predictors of later issues with substance use disorders. This includes anxiety, as Elissa mentioned, impulsivity, sensation seeking, and depression. If you know you have a teenager or, I have a 12 year old, with any of these issues, it would be in their interest to help them deal with something like anxiety. You help them mange their feelings, you get them proper coping skills really early on. We know that if they’re given the proper coping mechanisms early, then that leads to reductions downstream in the need to take alcohol or take illicit substances.
It’s really critical when a person starts using drugs. The brain is developing until about 25. In our society we make most alcohol, nicotine is legal at 18, alcohol is legal at 21. Marijuana will soon be legal, and these are incredibly powerful neuromodulators that are going to perturb a developing system at a really critical point. If a person starts drinking before the age of 15, their risks of alcohol abuse goes up almost four fold if they were to just start drinking past the age of 21. It’s really critical when the developing nervous system gets a drug. It’s really important to discover and keep an eye out for these predictors of later addictive behaviors and substance use disorder issues.
Dr. Lisa Belisle: Are you able to do anything with behavior modification in mice?
Elissa Chesler: That’s an interesting question. There are some studies that can be done and some that have been done to try and manipulate behavior in a manner that increases or decreases substance use. In general, especially for the kinds of techniques that we’re using, where we do larger scale genetics studies, I think, it’s an area that’s open for a lot of exploration right now. Now that we have over the past 10 years, I’d say, really made significant advances in our ability to do studies in highly complex behaviors, now is the time to ask those more complicated questions. We have the resources, and we have the computational tools to actually ask those questions well now.
Dr. Lisa Belisle: What are some of the exciting things that you’ve learned that you’ve been surprised by?
Vivek Kumar: I’m surprised every day. This is the reason I’m a scientist because I go into the lab with this idea that I could discover something new that no one else has discovered. It rarely happens, but it does happen. In one of the papers that we published as part of my post octoral work and the work that we’re continuing at the Jackson Laboratory, we looked at two inbred strains of mice. These mice were exactly identical in 1951, but sometime between 1961 and 1964, they picked up a mutation that causes a very different response to cocaine. We identified this one nucleotide out of 2.5, 2.8 billion nucleotides. That led to discovery of a gene and a pathway that people had not linked previously to addiction. It turns out that this protein and this pathway regulates structure, actually the structure of brain cells in a very critical circuit in the brain called a mesolimbic reward circuitry.
This circuitry is very critical in regulating addiction. It’s actually critical in regulation motivation. When this circuitry is perturbed, it can lead to all sorts of problems including addiction. It turns out that this gene which we cloned using cocaine response, now there’re other people who study nicotine response or study alcohol response or study food binging, have shown that this same mutation causes differences in all these different phenotypes which may seem really odd, but remember this reward circuitry is regulating a lot of different behaviors. Food reward, sex reward, these are natural rewards that this circuitry evolved to control.
It makes perfect sense that it’s not only regulating drugs of abuse, but it’s also regulating natural rewards. That was very surprising. We made a discovery with one drug, and it turns out to have phenotypes in many other domains.
Elissa Chesler: We’ve been looking at genes that play a role in multiple related behaviors. One of the things that we discovered through, we kind of sometimes think of it like dumpster diving, but we’ve taken lots of old studies in behavioral genetics and we’ve compiled the results of those studies, mostly genes that people were less interested in, and we put them in a database, and that allowed us to see where information piles up. What genes are most highly connected to different behaviors or groups of behaviors.
Doing this dumpster diving, we pulled one out that was really exciting to us. It actually is a gene that is both involved in alcohol withdrawal, but also alcohol preference. We’ve been able to show that there are genetic variants among mice that influence how this gene is expressed in response to alcohol. It actually can help us predict alcohol withdrawal, alcohol drinking. Gene regulatory mechanisms are really interesting. Although humans and mice share many, many genes in common, almost all of them, the very specific nature of that regulation differs.
Yet, we can show that this system in general is conserved from humans to mice, and that we may potentially be able to explain at least a little bit of variation in human alcohol drinking in those individuals that may experience more alcohol withdrawal. That’s something we’re looking at now. It’s always amazing to me that we have so many mechanisms of alcohol and drug response. People want to think there’s a gene for this and a gene for that. We’re really extracting millions of different mechanisms, if you will, maybe not millions, but a large number.
Different individuals are going to have different combinations of those mechanisms at play in their particular situation. We’ve got much to do to relate those to each individual and what they may need.
Dr. Lisa Belisle: Do you feel that we have become a more addicted society in general?
Elissa Chesler: Yeah. I think so. Huge predictor of addiction is stress. Alcohol drinking as well. There’s issues in the stress response. There’s also systematic issues in life stressors. When we have so many people experiencing economic distress, feeling a loss of opportunity in their lives, and a certain frustration, I think, drugs and alcohol become attractive.
Initiating is one thing. Starting to use is one thing. Having these things available, freely flowing in communities, whether it’s prescribed or street drugs, that’s just getting started. It’s what are the things that facilitate continued use. All of that is interacting with a person who may or may not be addiction prone. You can think of it as there’s a little bit of a needle there. We may be born with it set in some position, but life stress may push it closer, and drug exposure may push it closer. Even if someone’s really not that prone to addiction, but has all the other events occur, they can too be pushed into alcohol or drug addiction.
Vivek Kumar: Addiction like any chronic disease is a result of your genetics with your environment. Our genetics are not going to change that much. That takes many generations. Our environment can change fairly rapidly. All we have to do is look at the crack epidemic or the heroin epidemic or even the opioid abuse epidemic in the state of Maine. There are correlations between economic disparity and addiction. It makes perfect sense. When people feel hopeless, they seek alternatives to ease that pain, and drugs are a very easy way to deal with that.
Dr. Lisa Belisle: Dr. Kumar, one of the things that you talked about was binge eating, which I find very interesting, because obviously as a family practice doctor, not only do I deal with addictions to nicotine, addictions to alcohol, but we now have this obesity epidemic. I’m particularly interested in why you think that we might be predisposed to this now, this particular addiction, because I think there is a huge food addiction issue.
Vivek Kumar: Comes back to the circuitry, which is this mesolimbic reward circuitry. This circuitry evolved over millions of years where…. Let me put it this way. We have an animal that lives in a nest and has to make a decision every morning, am I going to go out there and explore? The risk is I can get eaten by a predator. If I go out there, I can find a new mate, I can find a new source of food, and this balance is exploratory drive, is regulated by this mesolimbic reward circuitry, which is a survival circuitry. When we eat, we feel good. Dopamine gets released. It’s not surprising that in certain contexts, we overeat to get certain amount of dopamine release. It’s acting through this same circuit. It has other components obviously, but it’s the same circuit that cocaine and heroine and other drugs of advice hijack. It comes back to the circuit and functioning of circuits in the brain.
Dr. Lisa Belisle: Really, you could become technically addicted to anything that’s going to give you pleasure by doing it. People can become addicted to say, yoga or meditation or good things that are actually good for them.
Vivek Kumar: Absolutely. This is one of the treatments for addiction. We wean someone off of a negative lifestyle, and you get them onto a positive lifestyle. You can feed the reward circuit with exercise. That releases endorphins and dopamine also. You can feed it with social interaction. When I meet you and I meet other people, that feels good. This has been in kids for instance, who are struggling with anxiety and impulsivity and these four traits I mentioned, one of the things that you coach them to do is actually how to interact well and you get them on exercise, you get them into organized sports. You feed that circuit with a completely different set of activities.
Dr. Lisa Belisle: Do you have any final thoughts for us, Dr. Chesler?
Elissa Chesler: Final thoughts?
Dr. Lisa Belisle: How about some interim thoughts? How about that?
Elissa Chesler: At this stage. I think we’ve really touched on the issues that there’s a lot of interconnectivity between normal behaviors, pleasurable experiences, and this a very unfortunate condition of addiction. Unraveling that complexity and understanding how we can get people on a better path is very important. I think the other thing is just getting that care widely available in our communities. There are places in Maine where there may be one or no people that are experienced and certified in this area, just making sure that care is available.
And that preventive measures are available, that’s so crucial right now. We’re going to learn a lot about the biology, but we’ve got to get it out to people.
Dr. Lisa Belisle: What about you, Dr. Kumar?
Vivek Kumar: I think one of the main things we as addiction researchers need to get across about our work is that addiction is not a moral personal failure. It really is a disease. It’s a disease like diabetes, like hypertension. We need to treat it like that. It can be managed. When someone has a substance use disorder or is an addict, we’re not going to cure them, we can manage their illness. Part of that management is that they’re going to relapse, just like someone with diabetes will eventually relapse and their blood sugar will go out of control. It’s very important to get that point across and not judge people who are suffering with addiction and who are dealing with addiction.
Dr. Lisa Belisle: I’ve been speaking with Dr. Elissa Chesler and Dr. Vivek Kumar from the Jackson Laboratory up in Bar Harbor. Mount Desert Island, I guess, technically. I really appreciate the time that you are taking, not only to be having this conversation with me, but also to be working on this because this is something that’s important to all of us, really, in not only in the state of Maine, but around the country. Thank you for all of this.
Elissa Chesler: Thank you.
Vivek Kumar: Thank you for covering this important topic.
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Dr. Lisa Belisle: Today I have with me Ann Lee Hussey, a polio survivor who has made the eradication of polio and the alleviation of suffering by polio survivors her life’s work. Over the past several years she has participated in 28 volunteer national immunization day trips overseas. She was recently honored as a White House Champion of Change for her humanitarianism and contributions to public service. Thanks so much for coming in today.
Ann Lee Hussey: Thank you for having me.
Dr. Lisa Belisle: You and I met at the York Hospital benefit, I believe, in the fall.
Ann Lee Hussey: Correct.
Dr. Lisa Belisle: You’re from the South Berwick area.
Ann Lee Hussey: Correct.
Dr. Lisa Belisle: You were born, I believe, at York Hospital.
Ann Lee Hussey: I was, yes.
Dr. Lisa Belisle: You’ve been all over the world. You’ve had kind of an exciting life for someone that’s honestly a Mainer.
Ann Lee Hussey: For a little girl from Maine, yes.
Dr. Lisa Belisle: Exactly.
Ann Lee Hussey: Yes.
Dr. Lisa Belisle: Did you think that when you developed this disease that it would send you down a road like this?
Ann Lee Hussey: Never. If you’d asked me that 20 years ago I would have just looked at you funny. Actually growing up, my polio, I never thought a whole lot about, and I just tried to be part of what was going on around me with my peers. It was my exposure to Rotary and when I learned about what they were doing with a program to eradicate polio, that I thought to my self, why am I not involved in this?
Dr. Lisa Belisle: Tell me about the polio itself. It’s something that in the United States most of us don’t really think about that much because we’re not faced with the actual disease. How old were you when you developed polio?
Ann Lee Hussey: I was 17 months. I contracted polio three months after the very first polio vaccine by Dr. Salk was released.
Dr. Lisa Belisle: Obviously you wouldn’t have much of a memory of that.
Ann Lee Hussey: I don’t. I don’t remember that experience. Only stories that have been told to me by my mom and my siblings and my cousins.
Dr. Lisa Belisle: What types of stories have you been told about that? I would imagine for a mother or parents or grandparents, it must have been pretty scary for them to have essentially a toddler come down with this horrible disease?
Ann Lee Hussey: Yeah. I can’t imagine how my mother would have reacted to that. I was the youngest of five and the only one that was affected. I know that she knew what it was immediately, not only because they’d lived through that polio era, but because her brother had contracted polio when he was five, her younger brother. She’d already seen that happen, so I think she was very scared. I was initially paralyzed from the waist down. It was a while before she ever told me that. I can’t imagine how a mother must feel when the only thing her little girl is moving is her head and arms, and please keep in mind there were others who were far more affected than I. I feel very lucky in the respect that I’m doing as well as I am today.
Other stories that were told to me were, my older sister told me about how my mom used to get up every three hours round the clock to massage my legs and move them to enable me to walk. I owe her a lot. I owe my mom a tremendous amount. Other stories were, my cousins, that just came out a couple years ago, how they used to take me down to the local pond which is down the road and she would take my braces off and put me in the water. Little did she know how therapeutic that was.
Dr. Lisa Belisle: They were almost inadvertently doing things that now we actually offer as something, a legitimate means of healing.
Ann Lee Hussey: Exactly. Yeah. My mother was told by the doctor to do all she could. I still went for rehabilitation centers as a toddler, but there were many things my mom had to do at home for me to get me to do that. One of those experiences that I really remember is my mom used to fill her purse with sand, and I would sit at the kitchen table and she would hang it off my foot and make me do leg lifts. Whatever it takes.
Dr. Lisa Belisle: That’s a creative approach.
Ann Lee Hussey: Yes.
Dr. Lisa Belisle: That takes quite a woman to say, I don’t mind having my purse filled with sand.
Ann Lee Hussey: My mom was a good woman.
Dr. Lisa Belisle: Youngest of five, too.
Ann Lee Hussey: I was. Youngest of five.
Dr. Lisa Belisle: It’s not enough that she’s already got five children to take care of, and then on top of that she gets to work with her youngest.
Ann Lee Hussey: Right. Right. Overall my siblings, I’m sure there was some jealousy, misunderstanding at that age why I was receiving all that attention, but overall they were very accommodating. It was a time, growing up in a small town, when neighbors reached out. They would bring meals over to my mom. That helped tremendously.
Dr. Lisa Belisle: Does it ever occur to you that it was maybe not the best luck that this vaccine was coming out, and you just happened to contract this prior to that happening?
Ann Lee Hussey: I don’t ever think about the fact that it may have had bad luck. I don’t think that at all. In fact I don’t blame anybody. It’s a virus, and it happened. I was young enough to not know any different. I grew up with the challenges that I had and learned how to face those and learned how to overcome and deal with it. Again I have to tell you that, especially now, after traveling around the world, I see so many other people that are so far more affected, that I’m truly blessed. I didn’t spend time in an iron lung, which would have been extremely scary. I’m not in a wheelchair now. I don’t know what will come down the road for me. I don’t blame anybody. It’s not woe is me, never ever been woe is me.
Dr. Lisa Belisle: I’m not sure that everything who’s listening has enough experience with polio to know what actually happens when one contracts this diseases. You’ve already mentioned a couple of things. Paralysis and the need to be in an iron lung. That’s because not only do your muscles of your legs, your limbs become paralyzed, but you can also not be able to breathe because there’s a muscle called the diaphragm that needs to be able to move in order for you to be able to bring air in and out of your lungs.
Ann Lee Hussey: Exactly.
Dr. Lisa Belisle: This is scary stuff that was going on. People, what I’m remembering hearing is that they would close down pools and swimming holes and people would quarantine their children in the middle of the summer. There was a fear around this.
Ann Lee Hussey: A huge fear. A huge fear. Especially in the city, because it seemed, though it affected the country, too, but at the time that I contracted polio, it was one of the last large epidemics in the Boston area. So many parents in the cities would pack up their children and move out to the country thinking they were going to escape the virus. They may have, but it actually may have brought it to me. There’s no proof of that, but there’s that possibility. I have friends who would tell me how they were never able to see any of their friends during their summer. At the end of school, they never saw them again until school started up again in the fall. They may not have seen all of them. Some of them may have passed away from polio during the summer.
Dr. Lisa Belisle: I’m wondering how it makes you feel, as someone who has survived this virus that is vaccine preventable, to hear that some people may have misgivings about vaccines?
Ann Lee Hussey: It bothers me tremendously. To the point of I get a little bit angry, because I don’t think that it’s fair that a parent make that judgment for a child, when there are so many facts out there telling us that the vaccine is safe and that the consequences of not taking the vaccine are huge. As you said, it’s a totally preventable disease. If you get polio, you always have polio. The effects are lifelong. Why would a parent take that risk, is my question. Why would they do that? There’s so much documentation out there that tells us that vaccines are good.
Dr. Lisa Belisle: At least with polio, more people are convinced this is one that if they’re going to choose amongst vaccines, that this is one that they are willing to have their children get.
Ann Lee Hussey: Yes. That’s true. If they were to travel with me though, overseas, they might think differently about refusing the measles or the whooping cough, or others, because there’s still large epidemics of that happening out there.
Dr. Lisa Belisle: Tell me about that.
Ann Lee Hussey: When I go out to immunize in the polio campaigns, we visit villages, and we’re reaching all these children up to the age of five. Many times they will say there’s a measles outbreak in this village. I think back to myself, I don’t see that so much in the US. We have in recent years. Those mothers will walk miles to come for a measles vaccination for their child. Miles. Not only for the polio, but they will walk miles for the measles and all the other ones that the health workers offer.
Dr. Lisa Belisle: What countries have you visited?
Ann Lee Hussey: I’ve been to India many ties, different parts of India. I’ve visited Nigeria multiple times. In addition to that I’ve been to Bangladesh, and Egypt, Niger, Mali, Benin, and Chad and Madagascar.
Dr. Lisa Belisle: What do you see when it comes to outbreaks of these diseases? How is the community able to actually respond?
Ann Lee Hussey: Fortunately we’ve been doing the polio program now for 31 years, and along with the eradication of polio we’ve also brought a greater awareness to how vaccines can help these individuals, and a greater awareness to mothers for reasons to come to health clinics. That’s what we see now. We see parents willing to go to medical doctors and nurses within their own countries to receive help to their kids. That’s a huge improvement over 30 years.
Dr. Lisa Belisle: What was it like before?
Ann Lee Hussey: There were tribal doctors. There were not medically fact based doctors, or there just wasn’t any access to health care at all. In some of the really remote regions that we go to, we’ve actually brought health care to them for the first time ever. Children would die. I was in Mali once, and this really went home to me. They don’t even name their children until the child’s at least a year old, because they just want to make sure that the child’s going to live.
Dr. Lisa Belisle: I guess that’s one of the things that I’m wondering, is that if you live in a country that’s probably challenged by things like sanitation, access to good nutrition, access to medical care, then if you have an outbreak, then it’s not as if you had an outbreak in a place like Portland where you have access to the Barbara Bush Children’s Hospital and the Maine Center for Disease Control. You’re talking about, you’re already starting from a very different place.
Ann Lee Hussey: Exactly. Exactly. That’s one of the reasons why the eradication of polio has taken so long because we are working with children who are malnourished and underserved in many ways and uneducated and all that. When we go to give a vaccine to a child who’s malnourished, their immune system doesn’t necessarily respond as quickly as a child here in Portland, because they’re not as healthy. Chronic diarrhea is one of the biggest killers of children overseas. The same reason because of the poor sanitation and water that’s not clean.
Dr. Lisa Belisle: Why has this been important to Rotary?
Ann Lee Hussey: Well, it’s very important to Rotary. We “tested” it in 1979, I say tested in quotes. When an individual, a Rotarian from the Philippines, asked if they could do a grant, funds, that would immunize the children in the Philippines, because at the time that he was asking, the Philippines was reporting the largest number of polio cases in that Asia region. We did that, and the success was immediate. We decreased the rate immensely and it wasn’t long after that the Philippines was polio free. When you see that kind of proof, number one, we’re willing to try. Number two, the polio is only in humans. There’s no animal reservoir or anything, or it would be impossible to do.
More importantly, what the unique thing about Rotary is that we are an army of volunteers, all around the globe. 1.2 million and growing strong. It’s that army of volunteers who can do advocacy, who can do hands on, who can get out into the streets and talk to the people in their own communities and help them understand the importance of what they’re doing. I think that is what made Rotary such a strong partner when we finally did reach out to the world health agencies around the world, they knew that that’s what Rotary brought, that army of volunteers, the ability to fundraise and the ability to advocate. That’s what we do best.
Dr. Lisa Belisle: In addition to doing this work you also work with your husband who’s a veterinarian and you’re a veterinary technician and you’ve been working together, you’ve been married 34 years, you’ve had a practice for how many years now?
Ann Lee Hussey: Since ’84, so do the math.
Dr. Lisa Belisle: You’re pretty busy. You have this whole other life.
Ann Lee Hussey: I do have this whole other life. I have to admit that I don’t work at the clinic anymore though. Rotary became my life, and my husband who’s also a Rotarian realized how important this was to me and said that it’s okay, go do it. Go see where this takes you. As the first couple years went by and I became more and more involved, I worked less and less. Now I don’t. I know all the girls and I go down and I visit and I do all of that, but I don’t have to be at the office because we have such excellent help to do it for me. Rotary has become my life. Polio eradication, in many ways, has become my life. I have a passion to see the end of this for many reasons, mostly because of the children of the world. No child should have to suffer. No child, again, from a totally preventable disease.
Dr. Lisa Belisle: What was the turning point for you, what point did you go from someone who had had polio to someone who wanted to eradicate polio?
Ann Lee Hussey: Remember my uncle was a polio survivor. He was a mentor for me, because I grew up watching how he dealt with things, physically, and emotionally. Then I learned about Rotary’s program, and I had the opportunity to take my very first trip in January of 2001, and I traveled to India. I stepped way outside my comfort zone, leaving little Maine and stepping out. It was fun. It was amazing, actually, to see the program, to see the logistics, to see what a tremendous amount of work they were doing in India. The thing that caught me was when I visited a rehabilitation center.
I’ve told this story many times. My apologies to viewers who may have heard this, but they paraded out in front of us, a group of school children, they want to show off who they were helping, and that’s fine. They all had assistive devices, various sorts. There was one little girl that it will never forget. When she walked past me, limping past me, she smiled at me. I of course returned her smile. She was a beautiful little girl.
I looked down at her legs showing beneath her skirt and there was that same thin right leg, that same heavy metal brace and I was really overcome with memories of myself at her age and I broke down. I basically broke down. I cried. I cried so hard. I say that I cried for her, but I cried for me. I cried for all the waste that polio was bringing for so many. Especially being there in India and seeing them on the streets, I thought, I have to do more. I could hear my uncle’s voice in my ears saying if you can just prevent one child, you’ll have done your job. I’ve prevented more than one child after all these years, but my job’s not finished. I think it’s that little girl, it’s her smile, it’s her perseverance, and it’s my uncle’s voice that keeps me going.
Dr. Lisa Belisle: You still deal with the after effects of polio.
Ann Lee Hussey: I do.
Dr. Lisa Belisle: As an adult.
Ann Lee Hussey: Mm-hmm (affirmative).
Dr. Lisa Belisle: Because once you get polio, if you’re lucky enough to survive, it’s always with you.
Ann Lee Hussey: Always with you. Every day of my life, it’s there. Polio has a condition known as post-polio syndrome that can affect survivors, anywhere from 30 to 40 years after they have that acute paralysis. You never know when that’s going to hit. What that post polio syndrome is extreme fatigue, you can have extreme pain in both muscles and joints. Then your weakness starts to take over. Some people actually end up back in wheelchairs or in leg braces, riding scooters. Here’s a disease that they had overcome, that they had triumphed, that they had persevered, and now it was coming back to haunt them. Not the disease, but the effects. I wake up every morning and put my feet on the floor and say I’ve still got it. I may be a little weaker than yesterday, I may have to hold onto the railings, I may walk slower than all my friends, but I’m still here. That’s how I look at life. I’m still here.
Dr. Lisa Belisle: You’ve obviously given so much time of yourself that you’ve been recognized as a White House Champion of Change. You don’t think of yourself in any way as being close to finished with this?
Ann Lee Hussey: No. We’re close. We are very close. Until we’ve reached that last child, until we come to zero cases, and then we pass three to four years without any more, then we’ll be finished.
Dr. Lisa Belisle: What is the current state of polio eradication?
Ann Lee Hussey: We are at a very good spot right now. We are actually poised to have the last case be finished this year in 2017. We never want to say for sure, because that polio virus is a persistent little devil and hides out in areas that we’re constantly watching. We have the lowest number of cases being reported. Stop and think when we started there were 1,000 cases being reported every single day. Over 350,000 a year, globally. Last year, for 2016, there were only 37 cases globally. We’ve driven that virus and reduced the area that it’s found now to just geographical regions within Pakistan, Afghanistan, and Nigeria, into small regions.
We have the tools, we know how to eradicate polio. The challenges that remain are areas of conflict. Areas of inaccessibility, rugged terrain as well as the conflict. We still need $1.8 billion through 2019 to finish this job. We have very generous donors. We think that that will happen, but we always need more donors. If anyone listening wants to help the children of the world and be a part of a very historic movement, go to endpolionow.org. Really, we are poised, and Rotary doesn’t do this alone. Rotary works with our partners, World Health Organization, Centers for Disease Control, and UNICEF.
In recent times, the Bill and Melinda Gates Foundation. We are determined. All their partners offer their own expertise to get us through this, and many thanks for Bill Gates and his contributions. They have been very generous. I think we’re so close. We’re so close. We used to put our fingers up and put this little space between them, but that space is getting smaller all the time.
Dr. Lisa Belisle: Ann Lee, anything else that you think people are listening ought to know about polio and the work that you’re doing?
Ann Lee Hussey: Just again let me just say, if you’re willing to contribute, go to endpolio.org. If you’re willing to learn more about Rotary, go to rotary.org. A nice website is the globalpolioeradication.org website. It’ll tell you the history of where we’ve come from, what’s happening, real time today in these countries that are still endemic. I have to add that in addition to the partners that I already mentioned, the governments of the world are a huge part of this. We couldn’t finish this job. We couldn’t have achieved what we have today without the government’s support. That includes the governments of the endemic regions as well as countries like our own and Canada and European, that are giving funds to finish this job. I want the people to know that this is the largest public-private health initiative ever created. It’s changing the world, and we’re making history. If you want to be a part of it, come join us.
Dr. Lisa Belisle: If I wasn’t convinced before, I am now. I appreciate your coming in and speaking with me, and I really appreciate all the work that you’re doing to spread the right information about immunizations and about eradicating polio. I’ve been speaking with Ann Lee Hussey, a polio survivor, who has made the eradication of polio and the alleviation of suffering by polio survivors her life’s work. Keep up the good work, Ann Lee.
Ann Lee Hussey: Thank you. Thanks for having me.
Dr. Lisa Belisle: You have been listening to Love Maine Radio, show number 285, Investigating Addiction and Preventing Polio. Our guests have included Dr. Elissa Chesler, Dr. Vivek Kumar, and Ann Lee Hussey. For more information on our guests and extended interviews, visit lovemaineradio.com. Love Maine Radio is downloadable for free on iTunes. For a preview of each week’s show, sign up for our e-newsletter and like our Love Maine Radio Facebook page. Follow me on Twitter as Dr. Lisa and see my running, travel, food, and wellness photos as bountiful1 on Instagram. We’d love to hear from you, so please let us know what you think of Love Maine Radio. We welcome your suggestions for future shows. Also, let our sponsors know that you have heard about them here. We are privileged that they enable us to bring Love Maine Radio to you each week. This is Dr. Lisa Belisle. I hope that you have enjoyed our Investigating Addiction and Preventing Polio show. Thank you for allowing me to be a part of your day. May you have a bountiful life.
Speaker 1: Love Maine Radio is made possible with the support of Berlin City Honda, the Rooms by Harding Lee Smith, Maine Magazine, Portland Art Gallery, and Art Collector Maine. Audio production and original music have been provided by Spencer Albee. Our editorial producer is Paul Koenig. Our assistant producer is Shelby Wassick. Our community development manager is Casey Lovejoy. Our executive producers are Kevin Thomas, Rebecca Falzano, and Lisa Belisle. For more information on our host’s production team, Maine Magazine, or any of the guests featured here today, please visit us at lovemaineradio.com