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Yvette’s Story

March 31,2021

Thank you so much. Thank you for joining us, representing the ninth congressional district of New York, and also for introducing a bill that we hope will change lives. The uterine fibroid research and education act. We are thrilled to hear about this. Um, you know, we know that it’s going to make a big difference in the conversation and in, in the awareness.

Um, of talk about uterine fibroids. And so, um, thank you so much for your involvement and for working to bring this up to the top in Washington is what we’re hoping. Um, so I’d like to just kind of talk about, uh, basically what we’ll be discussing during this interview. Um, definitely the uterine fibroid research and education act, uh, community and involvement, fibroid awareness and initiatives.

The health disparities in minority communities and access to quality healthcare, big one. And the impact of fibroids on women’s health. So I like to start off by, um, asking you a question Congresswoman Clark, you’re a sponsor of the uterine fibroid research and education act introduced introducing the bill to Congress in March of 2020, um, followed by vice president, Kamala Harris, introducing it to the Senate.

Why is this legislation so important to you? Well, this is important. This, it is extremely important for a number of reasons. We know that between 20 and 30% of women of reproductive age have been clinically recognized as having uterine fibroids and the screening studies indicate that the prevalence. Of uterine fibroids, particularly in black woman may be much higher.

Uh, when I first came to Congress, uh, I had a colleague Congresswoman Stephanie Tubbs Jones. Who’s now deceased who had actually introduced legislation to address this issue back in 2007. Um, and what, what was ironic about that is that when I arrived. In Washington, DC. And in 2007, I arrived carrying fibroids.

And, uh, so it’s personal for me. And I felt that, you know, for some reason, uh, this condition, it’s not something that’s widely recognized. It’s not something that is discussed regularly. Uh, you know, my own mother didn’t really have any. Uh, lens into what fibroids were. So it w we, we didn’t have it as a hereditary condition.

And so I thought it was important. Uh, that we raise the level of awareness, education, research, and information. Because as I went about my travels, I began to recognize that condition and other women. And I understood what it meant because I had personally gone through, uh, having uterine fibroids myself.

Um, so I think that it’s no secret that black women develop. Fibroids earlier, have larger, greater numbers of fibroids and even experienced even more severe symptoms than their white female counterparts. So this legislation will provide for research and education on uterine fibroids that we can find a way to combat what I consider to be a very devastating public health crisis.

Within, uh, the crises that we all face, uh, particularly for women and be productive, uh, years in their reproductive years. Absolutely. Um, I believe that if we can find an Avenue for early detection that can most certainly be life-changing for so many women. And with that said, um, I understand in the act that, um, one of the organizations that you’ve mentioned is the national Institute of health.

Specifically the national Institute of child health and human development. Um, and so we talked, when we talk about education about fibroids. Now we’re talking about a younger age group, which is definitely something that I know Dr. Yan has, um, been conversational about. Um, so Dr. John, one of the goals of the fibroid act is to create awareness about the fibroids, but definitely between, uh, definitely talking about the education behind it.

Uterine fibroids for, uh, everyone overall, but definitely for those of younger age groups, you’ve definitely talked about educating women between the ages of 16 and 26. Why is it so critical to reach young girls during that age group? I guess it’s personal for me too. I have two girls. I want the best for them and it’s hurting to know.

That, uh, there’s a inequality of opportunity to pursue happiness. When someone, we understand the men and women, a little different than women cares, children has periods and it’s, it’s, uh, it’s a lot tougher on her body, but many women have a worse life than others because of the fibers it’s so common. And what happens.

That’s those conditions are either not discussed or, or normalized of Norma. So people think it’s it’s okay to suffer. Mom, grandmother, everyone had this it’s normal. So why young? It’s so common. African-American women between ages of 18 and 30, 26% already have a symptomatic fibroids. Interestingly, the whites have to 7% by age of 35, 40 it’s, 60% African-American and 30% whites.

And then things become more or less equal by age of 50, 80% of blacks and 70% whites. So when it hurts young women and that’s most common treatment is hysterectomy. To me, it’s crime against humanity. You know, when we have a clause of 26 years old girl clauses and crying, do you have any, uh, you have any options with me?

And my get in colleges recommend hysterectomy. I don’t have kids. I’m not even pregnant that hurts, you know, white hat, because I know different. I know that uterine fibroid embolization that can be done in the office, we do it based on for about 4,000. Uh, uh, successful uterine fibroid and validations. We not, the 30, 40 minute procedure ambulatory in the office can fix and create the quality.

And that’s it basically cure. There’s a cure for fibroids it’s curable disease. If we attend to this early, we’ll provide the full potential and the girls will not suffer from. Physical symptoms, mental stress, social media. So do you have 5% of the women don’t have a normal sex life? How can that no family very difficult.

And that’s why if we educate early and tell about that abnormal things, not normal, and there’s a cure to this and everyone can find two, three hours for 30, 40 minute procedure. And that’s done in the office covered by insurance and majority of managed Medicaid. And just, so this is very, very important, right?

And that was a miracle when they’re heard about this, I guess I wasn’t aware about 2007, so, and we were so frustrated. We started fibroids, fight dish. We’ve done everything. We could create the fi USA fiber itself. Is proposed. I think we must work together. We have a solution and you have a means that will enable us to make everyone aware of it.

Absolutely. And Dr. GaN let’s double check is your video screen on. Yes it is. Okay. All right. I can not, but that’s okay. As long as I can see him. Okay. Fantastic. All right. Fantastic. Okay. And so, um, you know, with that being said, um, with the education aspect, Dr. Yon, um, let’s talk a little bit more specifically about reaching out to that younger generation, perhaps through something like health education, would you agree?

Absolutely. How did location is very important? Again, I have two girls, so they went through health education. That’s mostly done in the physical, uh, you know, part of physical education that’s and they definitely talk about, you know, STD. They talk about periods, but nobody talks about, eh, About abnormal periods, nobody talks about fibroids.

And then my girls went to, uh, schools in, in South Chicago area and they actually called the, uh, director school directors. And there were approved to give it to all they spoke with more than 800 kids, girls and boys. And one was, starts talking about this. Girl said, Oh yeah, no, my mom has it. Everyone has it.

And people were very interested today in digital age, we have to spread awareness and make sure that everyone from the youngest age is responsible for their body. How do we do it from an education, given knowledge and tools to make the right decisions? Absolutely. Absolutely. And Congresswoman Clark, um, for a woman who has experienced fibroids herself, when you think back on potentially having this type of information, when you were younger, um, do you find support in this conversation introduced by Dr.

Yon to have this type of health education earlier in school-aged girls? Absolutely awareness and access means, uh, the possibility of combating otherwise unaddressed public health issue. And one of the challenges we faced has been sort of the incidence way in which this condition develops in young girls.

Um, you know, over time, uh, it’s a compounded situation. But you, you know, as a young person, you’re not recognizing those changes and we’re not doing as good a job at educating particularly young women of color about their reproductive health. And it’s, it’s ironic because, uh, you know, back in, uh, the early two thousands, 2007, the procedure of, uh, embolism had not even been put forth into the public domain.

So the options were either, uh, uh, removing the fibroids or removing, uh, your uterus, uh, and the, the information. At the talk about at what stage, um, one needs to seek treatment because, uh, for many folks they wait until, uh, you know, it. Life is just totally unbearable. And at that stage, you’re, you know, you’re progressing through your reproductive years.

So this type of education is, is critical and, uh, primary care, primary care physicians are gynecologist. Everyone should be talking about the whole person and for girls and women, that means. Reproductive health and that’s what our bill is intended to do. And I’m so glad to know that there are fibroid fighters out there that are doing that work alongside.

And it’s about time, you know, uh, this is an old age old condition. It’s interesting because. As a younger woman, I worked with, uh, another, uh, public servant who also had fibroids, but there was no conversation about, uh, her sharing her experience with, you know, the young women around her. So we, we, we didn’t understand the significance of what she was going through.

And, and how it challenged her, uh, as she proceeded through childbirth and a whole host of other things that she ultimately, um, you know, uh, endured while carrying the fibroids at the same time. So I I’m, I’m hopeful. That the work that we’re doing here in terms of making in Washington DC and the work that, uh, advocacy organizations and the medical professionals are doing to open up the aperture on understanding what this condition is, and then having the research done so that we can, uh, come forth with clarity.

Around how to treat this condition. Um, I think it’s a win-win win. And I will also say that, uh, we know that people are delaying, uh, seeing medical professionals because we’re in a pandemic and, you know, time is of the essence when you’re carrying a fibroid. And unfortunately it’s those same vulnerable communities that were hardest hit by the pandemic that are delaying seeing their medical professionals may not even have access to, to, to, uh, primary care gynecology may not even have access to medical insurance.

So the pandemic has laid bare. A lot of the healthcare disparities that exist and embedded in that are women’s reproductive health. And as a part of that is an understanding of what you’d run fibroids are and how it impacts, um, the life and the livelihoods of women. Absolutely. And, um, it’s important that you also mentioned, um, you know, conversation around the topic just doesn’t exist much.

It hasn’t exist very much. Why do you think that is? Why is it that certain medical problems such as uterine fibroids or anything dealing with the women’s reproductive health system, miscarriages topics like that just aren’t really discussed. Well, I believe it’s because, you know, we’ve, we’ve lived in a male dominated society for very long time and unless the conditions impact men, um, oftentimes we don’t hear about it.

And now a lot of it has to do with how we’re conditioned in our society and our society conditions us, uh, to be squeamish when it comes to women’s reproductive health. Um, and, uh, women absorb that as well. So they’re not gonna be as inquisitive about what is happening with them. Medically, particularly when it comes to reproductive health, there are so many pressures bearing down on the freedom of women to be able to express themselves.

And that very significant part. Of their health care. Do you have a headache? We all know how to treat that you have uterine fibroids, uh, you know, might have to come back later or you might have that business directory. This is unfortunately where we are at this stage of human development in our civil society.

It doesn’t have to be that way. We need to liberate women in a way in which they can get answers that they they’re asked the right questions. You know, w w when young women go in to see a gynecologist, why isn’t that part of the questioning? Are you experiencing heavy menstrual cycles? Do you feel something different?

Let me examine your abdomen for this condition. These are things that can be taken care of, but we have to make sure that women have access to, uh, uh, medical professionals that are sensitive and also knowledgeable about this condition and how it can be treated. Absolutely Dr. Yan, I’d like to address this question with you first.

In what ways can we support, uh, the women who are suffering from uterine fibroids? And actually I kinda it’s, it’s kind of more of a black community as a whole as well. Um, from a medical standpoint, how can we support women and listen to their concerns as it relates to health conditions?

Congressman Clark, you said the amazing things. You just repeat that exactly what they were saying to everyone. If men for prostate, where would be recommend little amputation, that would be

right with five reds case tracks to miss a legal and the recommended. This is not the start. This is absurd. Now I want to tell you that one of the reasons when people as a doctor, right? How do we doctors make decisions that just make a decision for should based on risk and benefit? The same way other people make a decision, the risk can benefit.

So if people don’t see any benefit, if all they know that you’re suffer, suffer, suffer, but treatment is worse than disease like hysterectomy. And for sure, no babies is worse than okay. Maybe everyone knows fiber it’s number one reason for miscarriages. Right. But okay. Maybe I have a chance without uterus.

I will not have a chance. Uterine fibroid embolization is 2% of treatments. Two thirds are hysterectomy, third other minimal invasive things. Terrible. So if people will understand that there’s a treatment, that’s easy, nothing. Our local anesthesia Mount sedation go home said, okay, this is a treatment there’s appeal.

If you have a headache, as you said, People will take aspirin. They will not go for, you know, had the removal. Right. But what uterus I’m saying those things, it sounds absurd, but there’s the same thing is bizarre. What’s going on with the medicine and it’s okay to talk this way. Now. It’s interesting that you mentioned.

Education not to patient, but the physicians say, if I’m a hammer, I see the nail. If I make any colleges that do hysterectomy in, in my hands from options and mimic them a hysterectomy. So women go to gynecologist for certain things. And Guinea conscious has the tools they don’t know go to interventional radiologist.

I don’t know how many people know about specialty in the interventional radiology. They actually provide procedures. Those people work in the dark rooms. That’s the progress of medicine. You say there were surgeries then minimum invasive surgery, but now most of the things can be treated through tiny needle hall and interventional radiologist have a wonderful license to make holes everywhere for any parts of the body.

So it will connect the dots, give specialists who do the treatment to women who suffer. It’s it’s a win. That’s why we have almost a hundred locations in 18 States and 40 in New York city alone, just to connect the right doctors to right patients next. How do you know the benefit? You know, the price is low, right?

You’re feeling nothing easy. What do you, what do you think is a benefit? So if you understand, this is not just the pain, but there’s a lot of things physically. Symptoms, especially in the minority community, African-American women have more incidents, bigger size of fibroids, more symptoms, anemia, high hysterectomy rate.

And even after laminectomy two and a half times more complications and 2.3 times more anemia. I found this research two years before. The bill and pay people to do their whole evaluation of literature and came up with a many, many very specific answers. That’s amazed me how much opportunity we have to change the world.

And that will explain women that that’s physical is socially. Not having families, not having children mentally. If women cannot go out where whites go out. And first thing, if they, more than 15, 20 minutes outside the home, they need to look for bathroom. Why not talk about this small bladder? Doesn’t this thing doesn’t exist.

It just pressure for fiber that you need to run either to urinate or change it. Uh, hygiene, you know, it’s, it’s bad. Now I want to talk about other things I’m willing to 12 about equal opportunity in life, career, life development, absenteeism, you know, the cost of fibroids. I need to tell this to Congress because the fibroids is 25% cost of diabetes.

Now the biggest cost direct cost indirect cost indirect cost absenteeism women cannot go to work. If they cannot go to work, does it put a sequel with man, even if they have the same wedges? Not because most people, hourly employee, if they don’t get to work, they don’t get paid. That’s how inequality builds compound.

As you mentioned, compound in the quality that can be fixed, or it will advocate about different phases of suffering, physical, emotional, mental, social, um, Financial independence, uh, fertility, and then you have easiest solution. And by the way, diagnosis can be in majority of cases done by just ultrasound.

Trans-abdominal trans vaginal and Mariah’s book, but majority can be with a qualified though, just on tech. Anyone can do it. So I think if will educate people, that would be amazing. Absolutely doable. There is no unknown that we need to invent pill and vent treatment invent vaccine. Now we have a solution.

Hopefully even better solutions will come, but even the solution today can be applied. As long as people know about this. Absolutely. Thank you so much, Dr. Yon. And I think one of the most recent studies by the national Institute of health mentioned that the cost of fibroids is anywhere between 5.9 and $34.9 billion, depending on what variables you’re including, but.

Even at 5.9 billion, it is a ridiculous and remarkable number out there. Um, when it comes to the cost of uterine fibroids for either an employer or a, a patient or a physician, um, and that’s something definitely that has to be addressed. And with that said, that’s a great segue into, um, asking Congresswoman Clark about increasing funding and research.

How critical is it for us to increase the funding and research and public education as it relates to fibroids? Yeah. I mean, we, we can’t do this on the cheap. We see where that’s gotten us. Right. Um, it’s important that we invest in, uh, the education, the research, uh, the accessibility to folks like Dr. Yon, who, you know, can provide, uh, guidance to women, to young, young girls as they approach womanhood so that, you know, they’re prepared.

With the education and information, they need to navigate their own health, um, you know, and accurate information. Uh, like I said, I think we’ve, we’ve come a long way. Um, with respect to treatment, we want to get to, to, to, you know, what causes, um, uterine fibroids. We want to understand whether certain living conditions create, uh, the, uh, you know, th th.

The growth of fibroids. We want to get down to it so that we can unpack it for everyone. And that it’s a part of our conversations. You know, w we talked about how different genders health, uh, is, is spoke about in the public domain. So for women, you know, it’s almost taboo. In our society, because we have created sort of this respectability politics around women’s health and women’s bodies, particularly during their reproductive years.

So these resources are critical. We add to make sure that every corner of this nation, there are a specialist. And, and, and, and there is a connection as Dr. Yon has said it because it’s not just as he stated, uh, you know, primary care gynecology, but, you know, the, the, the, uh, allied healthcare professions that really specialize in treatment, uh, should be leading these conversations.

Uh, because again, uh, we don’t know what we don’t know. But there are those like Dr. Yon out there who do know, and they need far more exposure that requires resource. Absolutely. And I actually hear a strong connection between yourself, Congresswoman Clark and Dr. Yan, perhaps there’s a way for you all to collaborate, to talk about how to make education about uterine fibroids, widespread for younger women, and perhaps maybe talking about building some type of education program.

Um, you know, just hearing the, both of you speak passionately about it and knowing my own experience as well. If I would’ve known about something like this when I was younger, um, perhaps I wouldn’t be too myomectomies in right now. So, um, you know, definitely want to put that out there as a possibility. Um, so we, we have a vehicle right here in Washington, D D C myself, Congresswoman.

Uh, Robin Kelly of Illinois and Congresswoman Bonnie Watson Coleman have established a congressional caucus on black women and girls. And as, as it would, as it would, uh, you know, as it would happen, Congresswoman Robin Kelly of Illinois heads up black women’s health, she’s also chair of the congressional black caucus health brain trust.

And so that’s the sweet spot right there. That’s the intersectionality. And we do a number of presentations would definitely want to connect with Dr. Yon and we could lift up the legislation while at the same time, educating and informing and bringing together, uh, those within our collective communities that have been really focused on the healthcare imperatives of our community.

Absolutely. Um, Congresswoman Clark. Uh, we know that, uh, you work very hard to foster relationships between the United States and the Caribbean community, um, as a proud daughter to make an immigrants. Um, and co-chair of the congressional Caribbean caucus. Um, many women, maybe many Caribbean women are suffering with fibroids.

Um, as a physician Dr. Katz Nelson and his staff see a lot of Caribbeans and Islanders in the New York area. What more do you think needs to be done to help this population of women? Well, you know, we’ve, we’ve said it here. It’s all about education. All about education and mind you, when you are, you’re an immigrant, you come from, uh, you know, civil societies where some of what we’re talking about is also prevalent.

So that many of the women from the Caribbean region, uh, have seen other women. Press route work card all while being, uh, you know, uh, carriers of uterine fibroids. And so it has been normalized to a certain extent in, in those civil societies where they don’t have access necessarily to the latest in terms of healthcare and health information.

And in those societies as well. We’re talking about male dominated societies where. You know, it’s not, uh, uh, you’re not readily accessible to women who would have these conversations. So I think, again, the education campaign that we’ve been talking about throughout this interview is just as important in particularly in immigrant communities.

Where, you know, they’re coming into sort of a new, uh, civil society, the systems that are set up to provide, uh, services, uh, they’re navigating and just learning about what that navigation means in terms of their own personal health is important. And let’s, let’s also be honest here. Most women, particularly women of color, uh, men who are immigrants, they are so busy thing to others and they don’t stop to tend to themselves with the health sensor.

And that’s why I think you, you, you have, uh, things get to such a desperate stage before it’s addressed. Absolutely Dr. Johns hearing, Congresswoman Clark speak. It made me think about my own experience of visiting your USA fibroid centers in the New York area. And I think I just want to take a brief moment, um, for you to just kind of explain how.

I don’t know if simple is the right word, but how accessible the fibroid centers are and where they’re located in the U S because I think there’s a, there’s a tie there between the accessibility question and, um, and, and treatment options. So can you talk a little bit about your fibroid centers?

Absolutely. By the way, I’m double immigrant and, uh, you know, I English my third language. And so I, I exactly understand what you’re talking about. It’s a, it’s tough to be in a new country. It staff not to understand language it, staff, to worry about your family. You know, women always put themselves last and anything we can do that would be great.

I really liked your thing about education. I’ll answer your question about our centers, but education, because it’s important to understand when you have a big problem and you start solving their problem. At least I think what’s possible. What’s not, what’s normal. What’s unknown. What’s easy. What’s difficult.

And let me tell what’s possible. We’ve built USA fiber centers because there’s a known technology that can be easily done in the office. Okay. So we have X and we work on accessibility. What does accessibility accessibility it’s that you have availability off location of time? So that’s why we have, for example, in New York, we have locations in 19 States, mostly in inner cities because we enjoy helping divorced sick invents condition and not the miracle of medicine.

Is a magical healing that you take someone with a big problem and we make them happy, healthy. I liked it when I was doing the heart surgery, you stop the heart, you’ll fix it. And that’s better than before. That’s amazing. Now I feel we did the same thing with the vein treatments when the OneCare and absolutely there’s a real, it’s possible to do with a fibroid condition because technology is available.

So it will build a bunch of centers. Everywhere available within the one, two blocks from public transportation. Now this location, how about we’ll make them open seven days a week, early morning, late evening beyond regular business, nine to five hours because it’s not about doctors. I’m important back there.

I’m very smart. I can do this. No. It’s about patients when they were put patient first and serve them. That’s very important. So we put locations, make the work open seven days a week. And provide technology. That’s easy that they can go home two hours later and back to normal life, couple of days after that.

Now next thing. So that was availability. Next affordability in America is uterine fibroid. Embolization is covered by majority insurances and even manage Medicaid. There’s a few minor complications, interventional radiologist, and many men that mitigates, for example, in New York and your district, they have closed panels.

And then Sean says, says we have enough and nobody wants to talk because they thinking about hot cancer CFPD, that biggest, big four, they don’t understand 50 billion plus expenses. And now what if people would know that they can be held. And they have a disease instead of normal suffering. That would be $500 billion expenses because it’s such a common condition.

So it’s affordable mostly if we’ll allow intervention radiologist, not to be ever part of closed panel because that’s how insurance can allow patients to have the right treatment. Second thing definitely need to talk to Congresswoman, uh, Kevin, because in Chicago it’s weird. And I’ll tell you what I think it’s not something absolutely bad intention.

It’s because didn’t ask, you know, America, if you want something just to ask and bring them in and explain why. So Medicaid Congress medic managed Medicaid covered UFE in the hospital, but not in their offices. Right? Nobody’s explanation of why New York almost except a couple of States it’s allowed everywhere except Illinois.

Why? I don’t know, just need to ask. So this tiny thing, see if we can fix that would be fantastic. Now imagine, let’s say in New York, everything is good. You know, you have centers, you have this, but without the wellness education, they’re no good, right? People don’t go there. If people go to slaughter for hysterectomy now, 14 million women have symptoms, 10, 15 had a severe symptoms.

90% postpone the treatment because they’d better suffer. The instructing that by 500, 600,000 have hysterectomy. So if we’ll advocate and small tweaks, small tweaks with the, you know, a little insurance access, you know, credentialing a little approval here and there. Oh, I have an idea. Thanks, Joe metrics metrics.

Government has mandates. Four things. The government pays right? You pay you’re the boss, this metrics about blood pressure, smoking cessation obesity. How about we’ll put the metric. If government pays, please make sure you check fiber. It’s infamous. Hey, make sure that you know, why not? You pay you the boss.

You can ask this totally normal, totally fair. And suddenly it becomes absolutely a part of examination of every examination. Now it doesn’t matter what specialty, what doctor you have to talk about, you know, weight about. That’d be just control about it. If patient has Debbie smoking cessation, you have to talk.

That’s part of basic things. Like checking blood pressure. That needs to be basic thing for any woman of reproductive age. Talk about this. If Congress mandate, if, if that will be part of things, I think then wow. We need to measure something and gain something new. Okay. That’s the first reaction? Second.

What is it about? Oh my God. How much we can even,

is it options? Then doctors will know a lot fashions will know, and patients will know. So Congresswoman Clark, everything is up to you.

Uh, Dr. Yan, it’s up to, uh, the American people. It’s up to women. It’s up to, uh, all of our allies. Exactly to speak up and to be aware of the Stephanie Tubbs Jones, you’d run fibroid research and education act. So that that increased awareness makes it an imperative. Um, and that’s what we have to do. I think that women suffer in silence.

And when you’re in your silo and you’re suffering, you don’t realize how many other women are suffering as well. And through that community of interest, we can make a lot of change. And that’s, that’s why I went in this. That’s why I’m taking up the mantle because I personally know what it is to have one’s, you know, health compromise.

Uh, in this way and at such the prime time of your life. And so I really want to make sure that we, again widen the aperture demystify what this condition means to women, to black women, to immigrant women, to women who are suffering in silence. Absolutely. That is, um, just the heart of everything we’re doing here, Congresswoman Clark.

So I just, I really want to thank you.

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