Episode #55: Interview with Suzanne Robotti

Ever wondered who's safeguarding you from medication risks? Meet Suzanne Robotti, a fierce advocate who turned her own adversity into action. From battling the effects of DES to shaping FDA policies, Suzanne is your go-to guru for navigating the labyrinth of drug safety and asking the right questions

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Show Notes:

• Suzanne Robotti shares her personal journey with DES and founding the MedShadow Foundation.

• Discussion on the effects of DES exposure, skepticism towards medications, and advocating for informed decision-making.

• Emphasis on the power of education, caution with medication use, and collaboration for drug safety.

Key Takeaways:

• Lessons from DES Tragedy: Learn from Suzanne's personal journey with DES and the importance of heeding past mistakes.

• Informed Decision-Making: Suzanne urges listeners to question medical advice and do their own research.

• Advocacy for Drug Safety: Discover how Suzanne's experiences led to founding MedShadow and promoting safer medication use.

• Caution with Medications: Suzanne warns against over-reliance on medications and encourages natural remedies when possible.

Transcript:

Hello everyone and welcome back to Better Than A Pill. Today, I'm so excited to have Suzanne Robotti on as a guest. Suzanne started MedShadow Foundation in 2013  because she was harmed by a medicine called DES, which we're going to talk about today. And that was given to her mother while pregnant. And as a result, she was unable to have children. 

So, generations later, this hormone disruptor has been found to cause rare cancers, autoimmune diseases, and infertility.  In 2017, Suzanne was appointed to the FDA Advisory Committee on Drug Safety and Risk Management.  Joining a panel of doctors and pharmacists as the sole consumer representative  together, the committee reviews research and decides if a drug is safe enough for use.

So welcome Suzanne.  

Thank you, Carrie. I'm so excited to be here. 

Excellent. I'm so glad you're here too. And I thought we would start off a little bit about understanding  a little bit more about your story in this.  Yes, this drug, this is, this is really disturbing and really interesting. Sure. Um, it, it, it is disturbing and we learned, we mean people and the scientific community learned a lot from this drug, but have not, we haven't learned enough yet.

We haven't learned our lessons. This drug, which is the distressing part. So back when, um, my mother's pregnant with me in between the 1940s through to 1971. I was actually born in 57 if you want to do the math. Uh, my mother had had a couple of miscarriages and there was a drug called ethyl, still ferol.

So it's called DES. Diethylstilbestrol,  and it was given to women who had had a miscarriage or were at risk of miscarriage, uh, in the expectation that it would keep them from miscarrying. The theory behind the medicine is that it was a synthetic estrogen. Doctors had noticed that women's estrogen tended to drop right before they had a miscarriage.

So they thought if we can just pump them full of estrogen, that will save the pregnancy.  Well, it's very,  life isn't that simple, the body is not that simple, and synthetic estrogen is hundreds of times more powerful than natural estrogen that your body produces.  And the body could not handle this kind of estrogen. 

So, several things happened, uh, to those, those infants. They gave massive quantities of this drug to pregnant women. And it was probably between 5 and 10 million pregnant women who were given this drug. I don't know why. The FDA and the NIH, the National Institutes of Health, the major government organization, could never get the drug companies or about 30 drug companies making variations of  DES, couldn't ever get them to say, how much did you make?

How much is in storage? Let's do the math and find out how many people were affected.  They never figured that out. Uh, one of many questions. During that era, it was believed that there was a placental barrier that protected the fetus from anything that the mother did. Mothers were encouraged to continue smoking because it would keep them calm.

Have a drink, it will keep you happy. That kind of thing. And the placental barrier would protect you from everything. We now know that that is not true, and DES is one of the major reasons we know that.  DES went through the placenta into the fetus itself, and pumped that fetus full of estrogen. So, uh, when I was born, the damages that had been done to me were apparent if you knew where to look.

You just didn't know where to look. My fertility organs were underdeveloped. They were smaller than regular infant size, and never developed past that. Which is why I can never have children, never bear children. And back then, I found out, in the large scheme of things, I was lucky because I found out when I was 13 years old,  because I didn't have to go through years of fertility treatment trying to get pregnant, not understanding why.

So,  you know, there's, there's always some way to say, well, you know, that wasn't so bad. It was pretty bad. Um, when you are 13, you're different from every other girl on the planet, you feel very isolated and alone. And in fact,  I wasn't, and I was fortunate as a young adult to find an organization called DES Action.

Which, uh, was educating, informing, finding people who had been exposed to DES, gathering the information, and working with the National Cancer Institute in creating research on how this affected women. Because they found out  that in a, uh, small proportion of  the fetuses who were exposed to DES, it caused a rare And often deadly, usually deadly cancer of cervix and vagina called CCA, clear cell adenocarcinoma.

There are initials for everything. There will be no quiz.  And because of a cluster of young women who had this very rare cancer that had only been seen in women over the age of 90, because there were 7 of them between the ages of 18 and 24, all having it at the same time, they were able to say what was in common.

With them, and they went all the way back to  their mothers were all given DES in pregnancy, all prescribed it, all shot full of it, or took many pills of it.  So that's, that's when they realized that that was it. That was when they realized that drugs can cross the placental barrier.  And  those women, of course, were very deeply harmed then, but it was, it's another thing doctors learned at that time.

Nobody realized that  side effects, adverse events,  could  appear 20 years later after exposure to the drug.  Yeah. But as we now know, Many cancers feed on estrogen,  so by pumping those fetuses full of estrogen and their mothers, they created a ripe atmosphere for cancer.  Uh, it's still emotional for me to talk about this, and I'm, I'm a grown up.

This has been a long time. But, um, you know, it's, it's, you take this very personally when it happens to you. Sure. Um, and I did not have a CCA. Bye. Fortunately for me, I know women who have had it and survived it.  I didn't know people back then, but DES action was very, very helpful in bringing people together.

They helped to change laws. They made it possible for research to happen and for lawsuits to happen. And while nothing can, uh, make up. for the harm that they did. So it did, I should be more specific. My arms were somewhat unusual for more, uh, more commonly among the female babies born. The reproductive organs were, uh, the uterus tended to be T shaped.

If it was damaged, which is incompatible with carrying a baby, it might be tilted, which makes it more difficult, but not impossible to carry a baby. So there was a lot of infertility at first unexplained, and then they learned the patterns, uh, as they went on.  There's a lot of endometriosis and fibroids.

There are a lot of other issues that being exposed to too much cancer can do. And  DES action still exists. You can go to the website, find out all this information. Uh, I will say it also affected the mothers having been pumped full of estrogen. They ended up with a high, very high level of breast cancer in that cohort. 

D. E. S. daughters, um, had a high level of early onset breast cancer. They got breast cancer in their 30s and 40s. And the sons, D. E. S. sons had non cancerous tumors and other abnormalities in their fertility organs.  And now that we're into the third generation and fourth, Because it's an endocrine disruptor, it goes on through generations, and we're seeing  delayed menstruation and unexplained infertility in the daughters of the granddaughters of the mothers given this drug. 

So. Where does that leave me?  As I said, fortunately, I was able to know this so, you know, I didn't have to go through the whole get married and try to get pregnant. I did get married to a wonderful man. And, you know, we thought about having children at that point.  We didn't have all of it, it was the mid 80s when we got married.

And they didn't have all the technology they had. I had one doctor say to me, we could do a uterine transplant on you. You'd be the first. And I said, no, no, I really, I've, I've been experimented on once by doctors. I don't need it twice. Yeah. Uh, so it left many of us, you know, all my DESI sisters that I know and brothers,  uh, it left us very scared of medicines and hesitant to put our trust in a doctor saying, this is a, a wonder drug.

That's what DES was advertised, uh, as to doctors as a wonder drug,  uh, a miracle worker. And it was, it was not, and it was never pulled. Off the market specifically, but it was  no longer indicated for use in pregnancy in 1971.  Yeah. And you know, while I'd love to say it's a terrible drug, there aren't terrible drugs.

Drugs are just drugs. They're not good. They're not bad, but they can be used poorly. And this was used very poorly. Sure.  Wow. So, oh my goodness. Well, um, that's a lot in, you know, definitely, I know you've been through a lot and. You have the, you know, the courage to share and, but this has changed your life and it's, you know, driving you to do things about it.

And so I'm, I'm guessing this has something to do with MedShadow or  maybe if you indulge me with a second personal story, um, I'll tell you how it led to MedShadow.  So.  I was, as I said, always skeptical of medicines and my husband and I decided not to go ahead and adopt but, you know, just be a family with the two of us.

You know, we were fine. We were doing well. Uh, but then  my nephew, family of origin, uh, was having a lot of trouble. Just kind of a lot of, a lot of this difficulty and he seemed to be, At the center of a lot of it, not the center of it, but he is, you know, he's 12. He was 11 going on 12. And just at that point needed another, another place to live.

He has siblings. He's two living parents, but he just needed another place to live. So my husband and I had spent a lot of time with this. Nice kid. I'll try not to say his name because he deserves a little privacy too. But we asked if he wanted to come live with us for, you know, a year or maybe longer, you know, let's see how this works out.

And indeed he came and lived with us and he never kind of left. It's been wonderful. It was great to have a parenting experience, even though it started a week past his 12th birthday, which is a difficult time. To bring a child into a household that's never had children and we live in the middle of New York City.

So there are lots of things you need to learn along the way by the time your child gets to be 12, which we did not learn. So we put him in a Catholic school and within a month the  principal called us and said, This kid has ADHD. You need to put him on Ritalin. We need to calm this kid down.  And I said to him, I said, well, you know,  I'm sure you're right.

What do I know? But I would like to point out that he's new. He's new to New York City. He's new to us. Can we give him a little time to calm down on his own and just see if we can figure out how to be good parents to him? Because we're terrible parents. We don't know anything about it. We're making as many mistakes as you can possibly make.

And he said, okay, well, can give you a little time. And a month later he called back and he said, time is up. He's disrupting the classes. Yeah, the kids can't learn. So I took him to a specialist in New York. It's all specialists.  And he spent 20 minutes with Dan. Oh, the kid, sorry. My kid.  And said, uh, Oh, he's totally ADHD.

After 20 minutes, he said, Oh, this kid has ADHD. Here's a prescription for Ritalin. And it's, you know, 5 milligrams? And if that doesn't work, we can double it to 10. And if that doesn't work, we have Wellbutrin and Adderall. Don't worry, we'll get this kid under control. And I didn't like anything about that sentence.

Yeah. Yeah.  I said, you know, when you live in New York and probably in many other places too, there's so much Ritalin going around here and so much ADHD being thrown about that I know the side effects of Ritalin, as do, you know, a lot of parents do. It's, you know, the  anxiety, the jitteriness, the lack of appetite, stopping of growth, or slowing down of growth.

Uh, there's, you know, a lot of that. And that's, those are the bad parts. There are good parts. The concentration is much better.  Their behavior is better, they listen better, they're easier to live with, honestly.  But Dan never got that medicine. I asked if he could recommend an ADHD coach, or someone that could help us work with this ADHD.

And he said, uh, that never works. That's what the doctor said. And I said to the doctor, what are the long term side effects of giving this drug to a kid? And he said, there are none.  And I said, it's a drug that's designed to work in the brain. This brain is entering puberty. And it's not fully developed. 

What do you mean? There are no, no long term effects of it. And he said, there are none. I've been giving it out at that point. And he'd been giving it out for 15 years. And I would just know, he said,  there are no studies. And I called my internist. I called my friend, the pharmacist. I walked into my friend, Lee pharmacist in the neighborhood. 

And I asked him all, and I started to do my own research. And indeed. At the time, there were no studies longer than  312 days or something, which is not, of course, for a DES daughter long enough.  So, this kid did not get the medicine, and we worked with him. We got a homework helper. We ended up getting him some therapy.

Very importantly, uh, and this is another good lesson to learn. First of all, we asked for time and we got a little bit of time that didn't work. And then we asked questions and then I did my own research knowing nothing, but I barely, I don't think I took a science course after. Bio in high school.  But if you're listening to this program, you can do exactly what I did.

You go into Google, there's Google scholar, there's pub med, there are Cochran reports, and that will pop up as you search for medical studies. And you just.  Keep clicking on, you know, what's the definition of this word, and you can, you will see that there are some issues with this drug. I hope that there are no long term effects from it, but that's yet to be seen.

There are some long term studies. that is going on, but they take long term studies, take long term.  Um, and this was, I think it was, let me think 20 years ago that I had this conversation with that doctor and we are only now beginning to see some long term studies, which are raising questions. One study alone does not make a fact,  but multiple studies showing the same thing would make a fact. 

So you too can, can learn this. So  as this kid grew up and, you know, hit high school and was looking at college and I thought, what should I be doing? We were obviously fortunately in a position where my income didn't, we didn't need my income to live on. I could go back to school. I could do whatever I wanted. 

And I decided  that I wanted to do what I could do.  I can't believe I'm getting emotional. I have told this story many times and I'm every once in a while, I just, it just hits me again.  Okay. You're fine. I was afraid that Ritalin was another DES  and I was afraid. I was afraid that other people would be harmed like I was  in different ways. 

I thought about how I could stop that or, or make a change. And I realized  Ritalin is not the bad guy here. Drugs are not bad.  They can be used badly, but there are a lot of drugs out there. The women being given synthetic progesterone, not estrogen, progesterone  in pregnancy to avoid preterm birth is very scary to anybody who knows about DES. 

It's just a replication of exactly what happened with DES.  So that is what MedShadow is all about. It is from the easiest thing from cold medicine to the most complicated thing like Pregnancy drugs, which are terribly complicated because nobody researches them.  We give you free information on What the side effects are, what the risks are for these drugs.

You can find out the benefits of From anyone. That's the easy part and we mentioned benefits. We don't go deeply into them  But we talk about, you know, what a black box warning is on a drug and you know What affects this drug may have when it interacts with that drug  and we put a lot of focus on  You know, everyone's going to need drugs at some point.

I still have used drugs. I dislocated some  of this in my back and I used corticosteroids, which helped a bit. What can you do to minimize the use of your drugs? What you want to do is use them in the lowest possible dose  for the shortest period of time and  know how you're going to get off of them.  Uh, because you'd be shocked at how many drugs.

That you take innocently for a short bout of insomnia that you find out you can't just stop taking, uh, an insomnia drug. There's something called a rebound effect that will make your insomnia worse than it was after you get off of it. Then you just have to go through it all again.  So, yeah, so, that's what MedShadow is all about.

We don't accept money from pharmaceutical companies. I think that would be in violation of our, uh, promise to you that we give independent information, uninfluenced by pharmaceutical companies, and I, I have worked, uh, My previous career was in magazine publishing. I sold advertisements for magazines and I'm very aware of the influence that an advertiser or a donor to a non profit has to What that magazine publishes what that website publishes? 

And how it affects their policies so we do that. Well, that's great. And I mean, I can see the driving force behind MedShadow is pure. It's real. It's coming from your heart. I mean, everything that you felt and dealt with, and that's something to be said for. And  it sounds like the types of drugs are limited to any, are you doing all different types or everything?

We try to cover all common drugs.  You know, cold and flu remedies. I mean, we see things right out there in the news that people read and gloss over, and I don't blame them for that. The whole  cold and flu remedy, the Sudafed and Sudafed PE issue that came out a couple of months ago. Sudafed is, um, a decongestant.

And a pretty effective decongestant with a lot of side effects. So be careful when you use it. It can make you, um, a little mildly delirious. It can, it can do, it has a lot of side effects, read on.  What it can also do is, uh, it's pseudoephedrine and it can be made into meth, the street drug, and there've been TV shows about this.

So the FBA, who's in charge of all drug safety, determined, um, 10 years ago, 12 years ago, that. Sudafedrin could still be taken safely by people. It didn't need to be a prescription drug, but they wanted to slow down how much you could buy at once. You couldn't start a meth lab with it.  So what they did was they had the company that makes it, that makes Sudafed, take it off of the regular pharmaceutical shelves and put it. 

behind the pharmacy counter. So, all you had to do was ask for it. Um, you had to stand in line and ask for it from the pharmacist who would give it to you. You didn't have to qualify or have a prescription. But it was another step and the pharmacist could limit you to two or maybe four packages of it.

The manufacturer of Sudafed uh, realized immediately that that was going to be a problem because people didn't want to do that.  So they put Sudafed behind the counter as requested, but they came out with another drug called psed pe,  and it's not psed, it's phenol left screen. I'm sorry. I'm not quite sure I've got that right.

But it's another PE is, is how you refer to it. And I think, and. Uh, again, it was a drug that was approved by the FDA and they put it in. And so that would be the decongestant that you could get anytime you pick even a combination drug on, you know, Advil, cold and flu, Mochin, cold and flu, uh, any combination drug that claims to help you with decongestant. 

As one or many of the things that it will help you with, it would have this PE drug in it. The PE drug has been known for years, through research reports, to be ineffective. But finally, the FDA held a hearing, an advisory committee hearing, not one that I was on, but a different one, for cold and flu  drugs.

And they voted that, yes, this PE is ineffective. Absolutely useless. It does nothing for decongestion  and the FDA took that information and published a statement saying, don't panic. It won't hurt you. It just doesn't do anything. So we, the FDA, haven't decided if we're going to take it off the market yet or not.

Well, I'm insane about this. I have written about this. I've called people  because  there is no drug that doesn't have a side effect. It hopefully has a positive effect. That's why you're taking it. But every drug has side effects. If you take aspirin for your, any kind of aspirin or a headache reliever, it's probably going to upset your stomach.

That's what they do.  Right.  Once you swallow something, it goes through your entire system and it takes a couple of things to focus on. So, so, I don't know what the, I, I do know some of the side effects of, of  P. E. And they're not terrible, but I don't know the long term side effects. It hasn't been that closely studied.

It's an old drug, so the FDA's never really studied it. It just got Brought in along with a lot of old drugs when the FDA started without a close scrutiny And I don't  any time  You take any time a doctor would give you a drug that doesn't have a benefit to it and you are only getting risk That's malpractice Absolutely, you cannot be given you you cannot be given a drug that has no anticipated benefit and yet can harm you that is  Wrong.

It's just wrong.  Yeah. No, I mean, I'm sure that you're definitely passionate about that and thank you for sharing that information. And I'm sure there, there are a lot of drugs that you're encountering and there's so much out there. I mean, we're going to have to have you back on. That's all there is to it.

We're going to talk about something else, but we never got there. It's fine. We can break down, you know, categories, but now that we're talking about before we finish up just the topic of. cough medicine. Curious. Do you have one that you do recommend? 

What's the safest one when we have to reach for one and we're desperate, right? Cause we know they have side effects, right? You're not going to like the answer. The safest one is tea with honey. Yeah. That's what we do. No, no. I like the answer.  I do. Chicken soup. And if you've ever done nasal lavage, you know, we put the squirt water saline solution up one side of your nostril and come out the other.

It's disgusting, but it's effective.  And now that we can all work from home, at least a little bit.  Don't go out and stay in bed and watch the Kardashians or whatever one does when you feel sick and let your body, because your body has an amazing ability to heal itself, just an amazing capacity for health.

It wants to be healthy. You just have to help it. Yeah, no, I agree. So, your answer is there is no good cough medicine out there. And there's one more, there's one more tidbit. You're going to love this. Um, there is a study done by this. I think Maine is, you know, just a local family doctor. And this was seven or eight years ago.

I wrote about it in the chat, but nobody else picked up this study. Nobody else. So he noticed that people are coming in, you know, in the cold and flu season and coughing, coughing, coughing. And he'd say, they'd say, doc, I haven't had my cold in two weeks, but I'm still coughing like crazy. I got over my flu in two weeks.

I'm still coughing.  And he said, what are you taking for it? They take nothing, even as opening a cough drop in their mouth.  And he said, huh, why don't you stop with the cough drops and tell me how it goes.  And.  He said he called because I talked to him and I said I'm eating a cough drop as we talk. He said okay, so call me in two days.

I called him two days later He said how was the day after this is awful. I coughed my head off rebound  And he said how is it now? I said I haven't coughed all day. He said cough drops will make you cough. Methylated are worse, but all of them will make you cough. Yeah. Great takeaway. So no good cough medicine and stay away from cough drops.

Yes  , yes. Yeah. Even when kids are young, a mainstream medical practitioner, pediatrician will say, don't give your kids cough medicine. Right. And so why wouldn't that apply for an adult? You know, it's just like the body can heal naturally, right? And so, yeah, I mean, we, we, now I'm working with a naturopath. I give my kids something called silver.

which is a natural immunity supplementation. And then honey. Yes. We use Manuka honey a lot because that's a natural honey that has healing properties and they don't like the tea, but they'll do the Manuka honey and fluids  and then some other natural, you know, if we can, we try to do the natural remedies because you're, you know, there have been times where I have had to take a cough medicine or, or broken down and taken the, you know, uh, Whatever you want to call it, theraflu or something like that.

I don't even know the exact drug, you know, but I'm aware that  taking this is probably isn't the best, but sometimes we do do those things or I know I have, you know, so it's kind of like balancing out, you know,  I'm always embarrassed when somebody says something like, Oh, did you get your flu shot this year?

Like, Oh,  And I normally do, but somehow I never got around to it this year. And I, I, you know, the flu shot is not a hundred percent, but it keeps you from getting really sick and it helps you to keep from spreading it to other people. And yeah, I'm not, I'm hardly perfect, but yeah, but do be careful with, just because something is holistic or homegrown or whatever, you know,  Agatha Christie, the old mystery writer, killed a lot of people with the flower digitalis.

So, they're powerful, and they work because they're powerful. So, get it from a very reputable organization, and make sure that they, if you can, have that label from, say, A USP, you know, an outside laboratory, outside laboratory that verifies what's in it.  I know even one of my clients I work with is a retired physician and she's, she's done her work with functional medicine and, you know, supplementation, but she's always saying the same thing.

Please, you know, be mindful too, because, you know, just like, What you're doing, these drugs that are being created can work against us. So can some natural processes. It's like information, definitely what you shared, you know, a reputable source and all those things and making sure there's no interactions with anything else that you're taking on if you do natural things.

But I think that working with somebody you trust is really key. And I think that's where it's at, right? Working with somebody, just go to the health food store and just, you know, buy supplements and think that that's good enough. And it's, it's not, you need to work with somebody who has been trained and knows what they're doing.

Exactly. Yeah. So, yay. Well, this has been awesome. You're a wealth of information. I'm so excited that you're doing this med shadow and just, I'm going to be including that link in the episode today. So people know how to get a hold of this information and start educating themselves and. You're on there a lot.

You're, you're obviously writing a lot and putting information out there. And there's just so much out there. And, you know, look, that's why we, you know, this is better than a pill podcast for a reason. I mean, you know, it's just like what education is, you know, that's powerful right there. So Getting that out there.

And thank you so much for coming on and sharing your story a little bit too. And what led you to do this work. It's been great. Thanks. You know, I love your podcast. I love the name of your podcast. I love your philosophy. So yes, I'm so happy to be here. Thank you. You're welcome. And you'll be back. We're going to have you on again, but  remember you guys, we do new episodes every other week on Wednesday, and I look forward to having you join me then.