Taking Healthcare by Storm: Industry Insights with Karen Fernandes

In this episode of Taking Healthcare by Storm, Quality Insights Medical Director Dr. Jean Storm speaks with Karen Fernandes, RN, CPHQ, CPAA, a nationally respected healthcare leader and advocate with decades of experience in nursing, quality management and patient safety. 

Karen discusses her personal connection to the far-reaching impact of the synthetic estrogen diethylstilbestrol (DES), prescribed from the 1940s to the 1970s. She highlights its multi-generational health effects and stresses the need for increased awareness, research funding, and provider education.

Find out more about DES and its effects by visiting Karen’s DES Info Facebook page or sending her an email. 

If you have any topics or guests you'd like to see on future episodes, reach out to us on our website.

Publication number QI-091225-GK

Transcript

 Welcome to "Taking Healthcare by Storm: Industry Insights," the podcast that delves into the captivating intersection of innovation, science, compassion, and care. 

In each episode, Quality Insights’ Medical Director Dr. Jean Storm will have the privilege of engaging with leading experts across diverse fields, including dieticians, pharmacists, and brave patients navigating their own healthcare journeys. 

Our mission is to bring you the best healthcare insights, drawing from the expertise of professionals across West Virginia, Pennsylvania and the nation.

Subscribe now, and together, we can take healthcare by storm.

Hello everyone, and welcome to another episode of Taking Healthcare by Storm. I am Dr. Jean Storm, the medical Director of Quality Insights, and I am very excited for this episode as. I am joined by Karen Fernandez, RN, CP HQ CPHA many letters, a nationally respected healthcare leader and advocate with decades of experience in nursing.

Quality management and patient safety. Today, she's gonna be sharing her personal connection and professional insights into one of the most devastating and far reaching medical tragedies in US history. Diethylstilbestrol or DES, which I'm gonna be calling it in this episode. DES was prescribed to millions of women from the 1940s to the 1970s and was marketed as a wonder drug to prevent miscarriage, but it ultimately exposed generations to severe health risks, cancers and reproductive complications, and it is something that is not discussed.

Widely today, and it needs to be, we'll dive into the timeline of DES. Its multi-generational impact current advocacy efforts like House Resolution 3 42 and what needs to happen next for justice and awareness. I am very excited to dive in. Karen, welcome. Thank you so very much for joining us today. Thank you for inviting me.

It's very meaningful for me to be able to share this story of DES exposure and perhaps some of my personal story as well 'cause it's ongoing. Very important. So, as I said, you have an extensive background in nursing healthcare group. I do. And joint commission work. Can you share how your professional journey led you to become involved with raising awareness about DES exposure?

 It was not, I was exposed in 1949. I did not know the connection of what I was experiencing health wise until the mid eighties. So I was a nurse. I was an ER nurse.  And I would go to the library from time to get some resource articles. But I was in a hospital that had a huge medical library and I started reading.

Reading the journal articles one after another.  Too many to count now, but because I was a nurse, I needed to put my clinical brain around what was going on. Yes. Some of the  things I, I was reading was a little over my head, but I gained speed as I went on. So having access to the research. Now, this is in the 1980s, we didn't have the internet back then.

So I have copies of all the research articles that were done from the forties to the eighties in our library here. So if I, once I learned and connected the dots. My thirst for knowledge was really there.  And then I became involved with an advocacy group. I formed a group in Oklahoma and I did one in Texas.

And now we are all out on Facebook and we have a private Facebook page, DES strategy and DES info out there for the public. So as I put this together, I feel knowledge is power. And we wanna give knowledge to our members and let them know what they need. Because unfortunately, our members, when they go and see their physicians, a it was not taught very deeply in medical school.

 Some of my personal physicians says, I had one little lecture on that.  The, The first patient I've seen. So we want to give knowledge to our members. So we created a pamphlet caring for the  Diethylstilbestrol exposed patients. So we share that with our members who ask for that, who then go and share that with their physicians and other healthcare practitioners.

I have one practitioner in particular who said, once I know about this, and I started asking, I'm seeing more and more. That's true.  I'm on Medicare committees now and patient advocacy committees, and one of the things I'm asking for is our electronic medical record to have two questions. Are you DES exposed and do you have a family history of DES exposure?

That way we can, collect some information. There are millions out there. I can't tell you how many meetings I'll go into, and I'll ask, do you know if you're DES exposed? And I'll get one little hand, two little hands because. They're out there, but they don't get a chance to talk about it, so I share the information with them.

So  DES Diethylstilbestrol was discovered in England late 1938 and 1940, and it was a very powerful synthetic estrogen, and easy to produce. It was never patented. So they began looking at it and they said, oh, this will help have a healthy pregnancy. So here in the United States. But it was given around the world.

It was given, as you mentioned earlier, the Miracle Drug. Take this drug and you'll have a healthy baby. It was given under 200 different brand names. Some women only thought they were taking a prenatal vitamin. Some clinics gave it to every pregnant woman. So not all women knew that they took DES.

It wasn't until 1971 when they discovered a rare vaginal cancer at Mass General Hospital that some mother says, do you think it was that drug I took during pregnancy? That was the aha moment for the physicians in Mass General. So we started seeing rare vaginal cancer in adolescent girls and young women.

And it was devastating to them the surgeries they had to go through. So that was the first thing we started seeing. And once you knew you're a DES daughter, you need to go in every year for a specialized GYN exam. But it wasn't limited to vaginal cancer. It was given to the mothers. So the mothers were at risk for breast cancer and we're now seeing cervical cancer.

It was given to women who did not wanna breastfeed. 'cause breastfeed wasn't really popular in the sixties and seventies, early seventies, so it was given as to dry up their breast milk. It was also given as the morning after pill. It was also given to young girls 'cause they were going to be too tall and they wanted to stunt their growth.

So the magnitude of the exposure is great. Yeah, it, I was asked, I was interviewed in  from the United K and they said to me, Karen, how many are exposed? And that took me to step back and I had to take to deep breath because we had some statistics back in the 1980s. Which unfortunately are still being used today.

However, it's 2025 and we don't know the number of women who really got DES. We can't prove that. How about the women that were given it to dry up their breast milk morning after pill? We don't know that. It was the first transplant carcinogen. So their children were exposed, we were exposed in utero.  My mother took the Smith and Smith regime, which was increasing dosages from the very start of pregnancy to the end.

And some only took it in the first trimester was when you're exposed, when you would have more reproductive malformations. So we started seeing pregnancy problems in the DES daughters. And now DES daughters are also an increased risk for breast cancer. we're seeing cervical cancer. I just lost a really good friend with that.

And other cancers, DES sons at increased risk for testicular cancer and other epidemics concerns. The DES women, again  increased risk for breast cancer and cervical cancer, and it's very. Much in the news in England, Scotland, Ireland, Australia, and New Zealand, because back in the sixties and seventies, unwed mothers were asked to give up their babies for adoption and they were giving DES to dry up their breast milk.

So it hit the second generation. So we're all focusing on that, but we now know it's gone to the third generation, the DES grandchildren in the DES grandsons. We started seeing hypospadias. We also have documented  A-D-D-A-D-H-D in the third generation. So it does go to the, so we would have to count all the DES exposed, so there is no numbers out there for us to know who is exposed, but a large population has been exposed.

Yeah.  So the FDA issued a bulletin in 19. They did. But they did in 1970, it was advisory notice not to  give it to pregnant women. However people think it stopped at that point in time. However, we have DES members who were born in the late seventies. Wow. So it was given later than we thought.

And then people will say, when was it banned? Yeah. It was not banned until 2000. Oh, my. For human use. We also were consuming. DES  it was being used in the farm industry for it to fatten up cattle, lambs, chickens, and so it was in our food chain as well. Interesting enough, it was stopped in the food chain earlier than it was stopped for human use, unfortunately.

So. There was a rush to push it through. You've gotta think back to the forties in the FDA and where they were, and they pushed the approval of this drug through  very quickly. There were no real studies there, although I have research articles showing mammary tumors in the animals.  But it was pushed through and then it was marketed.

And we didn't have the internet back then. So the doctors were given the information from the pharmaceutical reps and off we went through some beautiful advertisements done, you know, have a heather, healthier, healthier baby. And the mothers who took it, were doing it in good faith.

Now we have seen the mothers have great guilt. They were easier to talk to their daughters about the effects of DES exposure and a little bit more hesitant on their sons. So the mothers had great guilt, but they're also were experiencing breast cancer as well. Just so, so I just wanna stop you there.

Yeah. Are there specific screenings? So you talked, there's a lot of cancers that are associated with DES exposure. Yes. You talked mental health  issues also with DES exposed individuals. Are there specific screenings or follow-up care that are recommended for individuals who know that they are DES exposed?

Yes.  Annual mammograms needed. In fact, when I get a mammogram, I get a diagnostic mammogram. So when I leave the mammogram center, I have a chance to visit with the radiologist. And oh, by the way, give them my DES pamphlet. So annual breast screening is required and then specialized GYN exams. Looking closely at the vulva, the vaginal and cervical inspection, looking at the cytology.

 Doing biopsies, doing a coloscopy. And so we've been doing that every year for the DES exposed. When is it over for us? We kind of thought it was gonna be over when we hit our forties and fifties. No, you know, it's still out there. Like I said  I just lost a dear friend with cervical cancer and she had a rough road post-op and then it, it returned and  it was bad.

So we really shouldn't stop it. We have the ability to do that. I've been on  Medicare committees looking at what age do we stop?  They're not considering those of us that are at risk. So we got knowledge  as power. We're providing this information to our members of what they need, and then they're sharing it with their physicians for what they need.

One of the things I've been working on, and it's not, I don't know where it's gonna be right now, is coding. You have to code patients for this. And there hasn't been specific ICD 10 codes for the DES exposed. But prior to this year, I've been working with them to get some ICD 10 code specific for the DES population.

And like I mentioned, if we could enhance our portals with a screening questionnaire, are you DES exposed or do you have a family history? We could begin collecting some data and do education along the way.  So do ICD 10 code for a DES exposed individual.  That's crazy, isn't it today? I know, I we we have ICD 10 codes, like if you are chased by a goose.

Yeah. Yeah. That's   I didn't know.    And I'm a healthcare provider and that's. Amazing.  You said, so this has spanned decades. Yes. Multiple generations are affected. So is do you think that the public understands that? Because most things, I think what people understand is okay. My mother took this medication and I was exposed and then it stops.

Right. But do you think people understand that maybe the effects are passed down and passed down? No, they don't.  I was at a meeting yesterday and one of the ladies had asked for one of my brochures and she came up to me, she says, I read it, and she says, now I know why I have all the health conditions I do have.

She says, I didn't know that. I just thought it was just me. But it was, a lot of her conditions are related directly to exposure to DES. What I find concerning too is more education is needed for the physicians and healthcare providers. Because remember we talked earlier, it was just the vaginal cancer and you know, probably cervical cancer and breast.

I work with  the Rebecca OSI at the NIH and some of the DES researchers, but they have found other health conditions related to DES exposure and if I might let me share some of these. Cardiovascular disease, increased risk of high cholesterol, hypertension, coronary artery disease, heart attacks, diabetes.

Pancreatic disorders, then they're really focusing on that a little bit right now. Early menopause, and many of the DES exposed women I work with have had early menopause, osteoporosis, endometriosis, brittle bones and fractures. And this one hits home to me because I have this, and I've just suffered my 20th fracture.

And it's  oh my God. I get, oh my goodness.  Spinal degeneration. That a lot of the DES exposed when they, when I put these articles out, they go, oh my, I didn't know it affected my spine. And also we're looking at immune system diseases, so, so it's not just this, but there's a lot of things. So a lot of education needed to go out there.

 So that the best care can be provided for this population that, are at risk. We're at risk. Absolutely.  So from your perspective  what has been the biggest failure in how the FDA and other regulatory bodies handled DES once they learned all these issues? So what was the biggest failure?

First they didn't do the research appropriately. Secondly, they didn't watch and read the research as it was coming on through the years. And lastly, but most importantly, we have not been issued an apology. Now you can remember, most people remember the thalidomide disaster they had, and a formal apology was given For the thalidomide, we have reproductive malformations.

You just can't see them. So it's not visual like the thalidomide. So the FDA and  Congressman McGovern, we'll talk about him in a little bit has met with the FDA in trying to push for an apology. Lawsuits have occurred, but most go to settlement. I feel the pharmaceutical industry, especially some of the big ones that are still out there, need to offer a formal apology.

Now, wouldn't it be nice if they offered monies for the screening that we need to have throughout our lifetime? That would be really nice, but at least an apology. It's 2025. If we have a medical error in healthcare, what do we do? We apologize. We tell 'em what happened. We're gonna investigate it, and it's never gonna happen again.

That's needed for this. That's needed For those of us that are exposed to this drug in utero, we couldn't avoid it. They need to take accountability 'cause they knew from the research articles that I have reviewed in the thirties and forties, they knew it had problems in the animal model. And a lot of the things we found in humans for the DES exposure was found in the animal model.

N-I-E-H-S have done a lot of studies. John McLaughlin and Aretha Newbold did some really great studies on that, but what they were seeing in the animal model we were seeing in the human model. Exposed to D-E-S-D-E-S is a  very powerful endocrine disruptor. People need to understand that. Physicians need to understand, we're looking at endocrine disruptors, but this is a very powerful one, a very powerful one.

So we need close screening and we need support. We don't need to be shoved aside, poo-pooed. No. The ladies that go there and the stories I hear back of how their approach is sad, that shouldn't be happening today. They need support. So  education for our healthcare providers is important. when you take the your C CMEs, if there was a CME on DES, would they take it?

One would hope so. Sometimes I go to places and I'll say, I went to a conference in Washington and I'm meeting with the CDC. On DES and I had a group of people in the room with me and I says, okay, how many here can tell me if you're DES exposed or if you have a family history of DES exposure? And they all just kind of looked and they didn't know.

So I think we need to reeducate the public because some people say well, I had my babies. I'm done. Are you really? Let's see. I can't tell you how many doctors I'm seeing right now from my. My issues I have  so you are not really done.  I talked with Dr. Hugh Taylor, who's he said Yale, I think, and he says, you know, we haven't studied the older DES exposed people enough because we are an aging population.

So we need to look at the aging population. We need to look at the third generation  and start getting more data. On that.  My son has had some issues being a third generation son, so it's a worldwide problem. You know, it's getting a lot of publicity now in the uk, but there are some advocacy groups.

 DES Info Association is what I lead and we formed in, in 2011. There's groups in Europe, in the United K just new in, in the United Kingdom, the Netherlands, France, Australia, New Zealand. So there are groups out there and we share information and we share the research. How can individuals find more information?

 Can they just go to Facebook and search. Yeah, if they go to Facebook  DES info, that's our major one. It's public and I keep getting more hits on that and I'll publish the research articles and if they want the true content they can email me that, and then DES tragedies a private Facebook page so that people can feel free to share what they're experiencing.

We put out DES Awareness Week and we do that once a year, so the last week of April, and that started in 1985 from President Reagan. So we've continued that, that legacy and and that's one of the things Congressman Go's trying to do with his resolution is to make that. You know,  an annual weekly awareness for DES.

Let's talk about that because I wanna make sure  we get that in. So you've been an advocate for this house resolution 3 42, which is coming up, right? You're going on a trip, right? Coming up.  It's coming up.  My good colleague Caitlin McCarthy, and I.  She's been pushing for this for a long time.

He, she is, he is her congressman. Okay. And she's worked closely with him and  he was set to put this out on DES Awareness Week in April, and he had a personal family emergency. So it's coming up. I am so excited. I can't tell you, Jean, how excited I am. I'm leaving Monday to go to Washington. And Tuesday we're going to meet Congressman McGovern and we're going to be down into the rotunda area of the capital exactly where I'm not quite sure, but Congresswoman Patsy Mink has now, she's passed on, but there's a beautiful portrait of her down there.

She is a DES mother. Wow. And her daughter is going to be with us. So we'll have another DES daughter with us.  There's gonna be four of us, so we'll take pictures there and then we'll go up into the house. And we, in the gallery, when he speaks  and proposes this, you know, he wants to establish DES Awareness Week.

He wants to restore some funds for research. We need more active research. They've been using a very small cohort and funding keeps going away, and now they're just  doing chart reviews or death reviews. And I don't feel personally as a nurse that's appropriate, especially for what the people are dealing with.

So he wants to restore funds for that, and he wants to secure a formal apology from the FDA. He's met with them and they tossed him aside and he went back. So that's gonna be part of this, is to secure a formal apology from the FDA for the DES strategy. We're a forgotten population. People have forgotten about us, but we're here, we're dealing with things, you know, every day.

So we do have a um, petition out there and it's called on change.org. Justice for DES families, you know, passed the house res resolution 3 42. We've got 1,090 signatures right now, so that's really important for us. We hit that a thousand mark and we were really happy with that. So it's very. Very exciting.

I would just say with all the public health threats that are out there Yep. Yes. Obviously is in those public health threats. And you, got me thinking, because you said if there was a CME, if there was an education available for physicians  would they? Listen to it where they watch it.

 I don't know if there is, but maybe there should be. There should be. I'd be happy to participate. There should be. Yeah, I think that's that would be a WA wonderful thing I've done CME, so maybe that could be down the line that we could do together and that would, that would be wonderful. When I have a new physician  we more have a collegial dialogue and I was going to see a pulmonologist  not DES related. But I said to his staff, tell him I'm going to have one question for him when I come in and it's about DES. And so when I went in, he went I looked and we had one question on our boards and he, you know, many years ago and he says, that was about vaginal cancer.

And I went, yeah, that was the start of it. But you need to know the rest of the story to care for the DES exposed. So this is why it's so important now to raise awareness about DES and push for this legislation  and more funding and medical education.  Very important. So anytime I see a doctor, I'm going in with my pamphlet and I'll leave it with them.

But something we did this year for DES Awareness Week is. We published a new document called Voices of the DES Exposed speaking out, and this started with just a couple of posts from our DES people and they said I was born in year and what they've experienced health-wise, and they just kept coming and coming.

So we put together our document, I think it's 15 pages of people sharing their stories. And  it is very powerful, but it was all words. So then I went out to our membership and I said, in addition to your stories, would you send me your picture? We are not gonna put any name on it, but send us your pictures.

So in this document we have the stories and we have pictures of actual DES exposed people. It's very powerful when I send it to the researchers, Dr. Taylor, this is what he said. This is very, very powerful. I'm now planning on a second edition 'cause there's more voices out there wanting to be heard. And then I've had some doctors look at it and they go look at the common themes in here.

One of the things I was talking to my  one of my urologist on is kidneys. Some people were born with one kidney. Some people you know, had two, some people had three, but they were kidney issues. Have we ever heard any of that? No, but that's what the DES exposed population are reporting a lot of spinal history issues.

There's a few with some stomach and pancreatic issues but we need to hear from more of them. We need more research on that or to collect the data. Boy, if we could only collect data on the amount of exposed, like I said, when I was asked in the uk, I can't give you a number. We used to say there were 10 million exposed.

And so many mothers. So many sons. So many daughters. But that was in the 1980s. We don't know with the second generation, the third generation we didn't have, or the inclusion of those that took it to dry up their breast milk.  Morning after pill, the one of the ladies I spoke with and our members had the morning after pill, and she's had breast cancer and cervical cancer.

So no data is collected on there, so we need data. The, in working in the CMS committees, if we had something passive, like in the EMR, the electronic medical record, they just do a click, click, yes no, and we could start to collect data. So when I'm on the committees, I'm usually fairly vocal on that. I'm always out there for the DES exposed.

I bet. So last question. Oh, if you had a magic wand, what is your hope for the future in terms of healthcare policy and support systems for those affected by DES?

It's multifold. It's multifold. The first is education for physicians. Healthcare providers, your, our CRNAs, our arps, or you know, they all need the education. Our, PAs, they all need this education. If it could be included in boards, maybe they would get or updating their boards. They could get that. So we need that.

We need the education. We need money for research. What's gonna happen to us  even as we age further, you know, I took read to you all those medical conditions. We don't really have good data on any of those. So you need data in order to move things forward and support, support for the DES exposed. So when a DES patient arrives in your office, you're aware of it and you're able to give them some support or say, I'm doing this because of, or you're okay because of this.

I'm on  technical advisory panels for breast cancer screening and. False positives. So, and we had this at the partnership for quality monitoring. False, you know, should we do that? Is it too much anxiety for the women? And I'm going, you know what? I'm one of those women. And yes, you're going to be nervous.

You get that call back, you're gonna be nervous and the end, you're gonna say, oh God, thank God I'm fine. So I would rather be nervous in the short term and everything be fine than have it missed. that's a concern I have had because physicians aren't asking the questions or not really assertive with the care.

We've lost some DES daughters all too young because they were diagnosed at stage four and  they didn't make it. And so they died in the forties and the fifties. That shouldn't be happening today. It should not be happening. So, you know, getting the appropriate screening. Making sure it's paid for, whether it be by CMS or the insurance carriers because we were exposed, not at our own fault, but at the fault of the FDA, of not having the appropriate research to say this is a sound drug or not.

Listening. In 1952 and 53, when they found it was ineffective to prevent pregnancy loss, yet it was still prescribed heavily. So that would, that would be my future education. Research. Oh, and of course the apology it sounds very appropriate, you think? Yes. Like I said earlier, we're the forgotten population, but we need to be recognized.

Right? There are too many of us out there and the DES sons, I think they're, some will come forward and share things with you, but most often the DES sons won't. And that's a shame. But may not really coming up talking about anything relative to their body parts. You know, thank you very much for joining us.

I wanted to just  I wanted to make sure our listeners knew again, the  Facebook site, your website, to make sure that if there are individuals out there who are maybe suffering in silence, that they know where they can go for support and help. Let me give you my email address, our email address. It is desinfo411@gmail.com.

You can email me, I'll send you these documents.  I'm there to support Victor. I'm gonna have a call later with a DES daughter that has some health issues. So we're gonna talk through that. So  my email is a good way to get these.  DES info is a general Facebook page, and that's where I post research articles.

And then if you are DES exposed. Go to DES tragedy, answer the questions, and that's where you'll see a lot of the personal stories and things coming forward there. So it's those areas to get to us, but I'm here every week, every day supporting the DES exposed, so there's someone at the end of a phone or the end of an email that can help you.

Thank you very much for joining us, Karen. If you're out there and you need support. And help. Please reach out to Karen. Reach out to these groups. Karen, thank you very much for joining us. Thank you for inviting me. It was a pleasure. Contact me anytime.

Thank you for tuning in to Taking Healthcare by Storm: Industry Insights with Quality Insights Medical Director Dr. Jean Storm. We hope that you enjoyed this episode. If you found value in what you heard, please consider subscribing to our podcast on your favorite platform.

If you have any topics or guests you'd like to see on future episodes, you can reach out to us on our website. We would love to hear from you.

So, until next time, stay curious, stay compassionate, and keep taking healthcare by storm.