EPISODE LINK: REBECCA BLOOM

BOOK: LINK

TRANSCRIPT:

Colleen: Welcome back. Today we are going to have a really great conversation with Rebecca Bloom, who is the

author of Women Get Sick: An Empowering Approach for Getting the Support You Need.

And wow, nowadays, we need support in the healthcare world.

It is a mess. I don’t even know how you can take pieces of it because it just seems like every day

more news is coming out that the health care is being affected, that it increases in premiums.

So I wanted to start with the book. Let’s start with chapter one of the book.

You talk about setting yourself up for support. How did you get into this and why is it so

important for you that you have to set up support systems for healthcare?

Rebecca: So how I got into it is a long story. I’ll try to make it short, but I had this very esoteric legal

background in big law that was sort of chosen by me because I had to pay off my student loans and

didn’t want to cry too much at night about what I did all day. And so I chose employee benefits

thinking, you know, there’s that word human and human resources. I was a humanities major in

college. I thought this might be the best path for a sensitive soul like me.

So I got there and I did dog years, you know, I mean, the hours are so insane that,

the upside of those hours is you do crunch a lot of information, you learn a lot.

And so I did. And then I moved to California.

And it felt like two minutes later, but I think it was really two years later, when my toddler and

I returned to New York to help care for my mom after her breast cancer diagnosis. And what I saw so

up close was even with relative security, financial stability,

health insurance plan that worked, a partner in my dad who was wonderful in every way,

it was still a labyrinth. It was still so difficult. And,

you know, I moved to California, you know, there’s that gold rush idea, Eureka. Well.

I had a eureka moment of my own. And I was like, whoa, I have these really weird,

very specific legal skills that could really be of assistance to my mom.

You know, not just workplace, but health space, insurance, every benefit that you have,

how to communicate with this whole big, messy system. So that’s what I ended up doing.

I ended up helping my mom. I thought it was going to be like. put the lasagna in the freezer and

say, thank you for the flowers. And it turned into that. So it was a bit of a revelation for me,

a eureka, like I said. So I went back to California and I connected with a breast cancer

organization, which is now a breast and ovarian organization. The reason being, women are living

longer with ovarian cancer, which is a good thing. And I went to the executive director and I said,

well, I just learned something very strange by walking my mom through breast cancer about what I

know. Do you think I could help you and help your clients? And, you know,

she kind of laughed because it was like, you know, it’s a hot day and you’re really craving ice

cream and the Good Humor truck drives up, you know, type of situation. So that turned into my

life’s work. Also in tandem, I have always been a book coach and editor. Well,

not always, but for about 20 plus years. So when I started to see what you mentioned,

this mess getting worse, I thought maybe it’s time to share these learnings with a wider audience.

So that’s why I put the effort into creating this book.

Bridgett: this book to me was such an eye opener. And I just want all of our listeners to know that it is

very easy to follow and to read because, when you get those insurance bills in and you’re

like, what does this mean? Your book made so much sense in explaining everything and the way you

broke it down in the chapters. And I love to how you discuss getting your team together.

If you find out that something has happened to you and you also you also included all kinds of

situations. You could be employed. You might’ve lost your job. You might’ve just gotten this

terribly scary diagnosis. And that was the thing you talked about, getting this team together.

Can you talk about who some of those people on the team are and what would be good advice for

somebody that’s on that team?

Rebecca: So first thing is to talk specifically about women here.

Women hold up the world. We take care of everybody. We put out all this social capital,

but we never think, what do I do when I have a need? And how do I look at that? How do I look at

the landscape of my own personal safety net? But the good news is, once you’re willing to open your

eyes and look at that, what you realize is you’ve paved the way just by being who you are in the

world, in society, in your community, in your family, etc. You know, you’re the one who’s taking

the cause when somebody’s in pain. You don’t even think about it, but you do it. So what do you do?

You kind of take stock. What is my personal safety net? Who are my go-tos?

Who’s the person who’s a natural project manager? Who’s the carpool driver for me?

Who’s that person who might be a lawyer or an accountant or a spreadsheet queen who can help me

tame this beast? So that’s sort of inside your own life. Then you think about,

If you’re employed, who’s on that HR team? It’s actually their job to help you through a situation

like this. You think of it as adversarial because you’re worried that they’re going to judge you

because you have a need. No, it’s their job to deal with your need. So that’s a person you want.

Think about inside your doctor’s office or your health care system. There’s always that person.

It’s usually a woman who runs the show. We know who she is, right? She’s on your team.

Just ask her. And on that topic of setting yourself up, I think the most revelatory piece of advice

that I’ve given, at least what people tell me they think is the most revelatory, is a simple one.

Ask for those connections and those avenues. before you need them.

Just write an email or make a telephone call to this group of people that I mentioned and say,

listen, I’m embarking on a journey. I don’t really know what I’m going to need yet. I’m not really

sure what pothole I’m going to hit. You know, the challenges are going to be what they’re going to

be. It would help so much if I knew that I could reach to you if I need something.

That is a great thing to do. It’s human. You’re not really asking for anything other than

connection. And everybody wants that. We all want that. We all want to be part of a system that’s

making things better. So there you go.

Colleen: And I think it kind of runs through the whole book that

being proactive is key. Get all of your ducks in a row before you start this journey and really

educating yourself. I think you write chapters on health insurance when you work in the workplace

and then finding health insurance. And that is such a big feat for people, especially you talk

a lot about divorce in the book and that someone can just lose their health insurance through a divorce. So with the idea of someone who might be starting out recently divorced,

recently let go, because a lot of people are being laid off right now. How can they go about,

what’s the first thing they should do about trying to find insurance that will work for them?

Rebecca: So first of all, I want to acknowledge when that happens, it’s scary and it feels huge and complicated

and I get it. You know, I don’t want people to go, ah, it’s no big deal.

You got a state marketplace, get your act together. No, it’s a hard thing. And people get a lot of anxiety about it for good reason. Something like one in six women in America are actually in medical debt. So nobody’s making this up. You know, we have a lot of catastrophizing that goes on in our world and in our healthcare system and social media amplifies those things. But this really is a big thing. So if you’re feeling anxious or worried, it’s okay.

Take a breath. Take a minute. You’re allowed to feel that way. Now, what do you do? Well, this is something that I think is really hard for people to do because we’re always jumping to feel better fast. So we go right to the state marketplace and go, oh, there’s a plan. There’s a price.

I can afford that. Done. You know, because we want to be done. I think the best thing to do is back into the care that you actually want. Go to the doctors you actually want on your team.

See what the medical system is accepting and really talk to the people in the office,

even if it takes an extra day or something to get your answers, because every year they’re dropping plans. Don’t sign up for a plan that they’re about to drop because then you’re going to have more anxiety. And it happens all the time. I mean, this happens. I’ve seen women in active treatment who

are getting these letters that go, you know, we’re not renewing that contract. So, you know, just so you know, FYI, be ready. You know, who needs that? So go talk to the people in the office.

Not only find out which plans they take. Find out which ones they seem to favor,

which ones are going smoothly for them, because you know they’re going to drop the squeaky wheel,

the one that’s not paying, the one that’s giving them the most resistance. So find out which plan is the one that they are favoring and that the system seems likely to continue to honor and then go shopping.

Bridgett: I love to how you add the getting creative. If something happens, I had no idea until I read your book that if you had an LLC and you  have contract workers,

you could start a group insurance. I did not know this until I read your book.

Could you share just some of the creative things that have happened.

Not the reverse mortgage, because that didn’t happen.

Rebecca: No, it didn’t. But I wish it did.

Bridgett: But you sure tried.  But can you share some of the creative ways? Because this,

you know, these things happen to women. You hear it all the time. I have a sibling that is self

-employed. And right now, ACA rates in our state of Tennessee, it’s like she was thinking of

dropping insurance. Now her husband stepped in and said, no, don’t do that. But can you talk about these creative ways?

Rebecca: Yeah, you know, first of all, a little bit what’s old is what’s new, right?

Because a lot of these things are things that I was trying to help women achieve before we had the ACA and before we had the state marketplaces. Because then if you had a pre-existing condition, and that could be anything from like cancer to an asthma puffer, you might have a really hard time getting good insurance. So it started there, the DNA of this creativity was pre-ACA. Now we’re sort of in this post-ACA where the A,

which stands for affordable, is hanging in the balance,

right? So, you know, and I’ve talked with people about this,

even with individual plans, if you can be on a group plan,

group plans are still usually better. Why is that? Because they’re more stable. They tend to get dropped less. They have a bigger subscriber base, you know,

there’s a lot of reasons why they have extra negotiated fringe benefits,

more wellness, more things that are maybe outside the medical system that tend to be covered for

all those reasons. So yeah, you can look at the life that you’re living and women are most likely to be gig workers and most likely to be independent solopreneurs because they’re covering other bases in life. They’re looking for that flexibility for other reasons like responsibilities with childcare, et cetera. So, you know, they’re more vulnerable for that reason.

So what can you do? Well, look at what you’re already doing and think about how you might be able to organize in a group. You could become an LLC. You could link with other people who are doing what you’re doing. That might change your insurance buying power. You could turn into a group if you do it that way. So it might be worth it. And I often say that it is.

Bridgett: And yeah, I wish that reverse mortgage had worked so that woman could have stayed in her house.

Because that’s another idea that’s about creativity. Two years shy of the age.

It was 62 to get it.

perfect idea. And then, you know, but I appreciate you sharing all the stories that are in there.

Because you see the example. And when you’re reading about the different stories you use, people think, I know someone like that. I know someone that this situation relates to.

Colleen:  And I hope it opens readers minds to the fact that the way you’re thinking is the only way, may not be the only way to get creative. And you also mentioned to go on,

I think it’s healthcare.gov. To go on there. And I haven’t been on there,

but I would imagine you press the button and it’s overwhelming from the get-go.

Rebecca:  It is, but you know what’s worse? Doing a random search because there’s a lot of… predatory folks out there who are going to try to sell you something expensive that actually isn’t what you need. And they know how to use search engine optimization and they know what’s on your mind. So if you just use the Google or the ChatGPT, you could end up someplace unofficial and you could end up with a plan that you think is going to help you and it really doesn’t cover you. So that’s why I say go through the official channels and healthcare.gov is going to send you to your own state and your own state marketplace. And then you’re talking about once you get there, go talk to your doctors, find out which plans are the most, are the safest, most secure.

Colleen: Right. And then find out what works for you. Can you talk about, a lot of people don’t know the difference between a HMO and a PPO.

Rebecca: Yeah, sure. So an HMO is really just managed care.

It’s just, you know, you pay a certain amount and it’s managed like a Kaiser Permanente.

They’re the original  HMO, actually. And so the good news with that is you pay,

and you don’t really have to deal with a lot of this extra red tape and new bills and

everything like that. You just need to make your appointments and go. And what’s good about that is it feels secure and it feels safe. And in certain instances, for example, in my area, in the Bay Area, Kaiser Permanente has excellent cancer care. It’s excellent. So that takes a lot of the headache out of it and it’s cheaper. But what if you need something that they don’t have?

There’s going to be a lot of push to get it. What if you just want choices? Different doctors,

different health system. You know, people get in their head, I need X, it’s the best. Whether it’s really the best or not, right? Everybody wants to be able to get the very best treatment when they’re in a stressful situation. So that’s going to be a hard thing because it may not be covered.

So that’s an HMO. A PPO, that means preferred provider. OK,

that’s what the PP stands for. And there you get better coverage and more choice.

And you can go inside of one system, inside of the other system. Let’s say you’re not so crazy about your normal system. You don’t feel they have the specialist you need. You can go across the street to the teaching hospital and try it there. And generally speaking,

you will have more choice and more coverage when you do that. But they’re still in-network, out

-of-network. You know, everything is complex.

Bridgett: It sure is. And then you talk about,

like, the No Surprises Act, too. And can you talk about why that came about?

Rebecca: Yeah. So the No Surprises Act was reactive to a problem. And all the new laws are reactive to a problem. Because everybody, the insurance companies are lined up to say no.

Until you force them to say yes. And that’s why you have to have these laws to force them to say yes to things. So the No Surprises Act came out of the fact that, let’s say I need a surgery and I go to my local medical system where I am covered.

Well, great, but they might have some doctors that come in who aren’t covered,

even though I would expect everybody to be covered. But I get a bad surprise because let’s say my radiologist or my anesthesiologist who are part of the team that gets assigned to me, I don’t choose it, gets assigned to me. All of a sudden, I find out one of those doctors was out of network. And then I get a big, giant bill that I didn’t expect. That’s a bad surprise.

That’s why the No Surprises Act was passed to say, oh, no, no, if that happens,

then your insurance company is going to have to cover that too.

Bridgett:  And I mean, that happens

so much. There’s so many things, too, that came up when you talked about being denied.

The billing. You wrote a chapter on just billing and what to do when you’re denied.

Rebecca: Yeah. Well, we all know. I mean, raise your hand if you’ve never gotten a denial.

Anyone? Anyone? Anyone? Anyone? I mean, right? I mean. You have to believe,

and I do, and there is some data to show it, that denials are done even when things should be covered. There’s some gambling going on. I think there is.

I think it’s fair to say that. So you’ve got to know that almost everybody has dealt with this

before. And one of the things that is shocking is that so few people appeal.

The truth is, you’ve got more than an even chance of winning an appeal,

especially on the second go round. But even on the first go round,

it’s close to that. But something like in the 90s, people don’t appeal 90 percent,

which is so upsetting. But it’s because it’s so stressful. It’s because there’s so much red tape.  I truly think that sometimes there’s even an amount that gets billed out where there’s a bet that, oh, it’s just under $1,000. And when I really think about it, even though that’s a lot of money. I can’t deal with this. I just want this over. And I don’t want to be done with a bill that says

this is due. It’s a very stressful experience. So I’ve actually seen this in action.

Bridgett: There’s even a thing in the book where a Medicaid patient was sent like an $800 bill.

And I’ve seen that amount before. And it turned out the whole thing was like a scam.

Rebecca: It was like a data breach. And, you know, the whole thing was a made-up bill. It was built to her wrong insurance. You know, from like a few years back,

it was definitely pulled out from a data breach. And she was panicked and ready to pay.

Bridgett: Right. I read that part of your book really shocked me because you really dug in and it’s going to some Pentecostal church. I know. Wow. And I mean, you don’t expect to see that.

And if you’ve had that procedure and you’re thinking, okay, that is the procedure. When I was young, I was like in my thirties and my doctor ordered a heart halter monitor. So it was my doctor and in network. She ordered it. I wore it. And then afterwards, they tell me they weren’t going to pay it. And I was young then, and it was a lot of money. Now, in my situation now, I probably would have just paid it, gone online and paid it. But at that time, the budget was tighter. I called them. They were like, well, no. And I said, well, she is in network

and my doctor in network. And then they said, OK, we’ll pay it. Like in the same phone call.

And I was shocked because I couldn’t believe that that’s all it took.

Rebecca: You didn’t even need to bring in an appeal.

Bridgett: I just made a telephone call.

Rbeccca: Right. But, you know, a lot of people aren’t going to make that phone call. They’re going to be on hold for two hours and then they’re going

to lose their minds and say, forget it. I’m paying it.

Bridgett: Right. Right. Yeah. And that is so many

things in there just really opened my eyes. Another thing that you bring up is why women.

you know, why women and especially women of color, and we have had women of color on this show that things have happened to where people don’t listen to them. One of them stands out as Keisha Stewart, who had a SCAD heart event. And I mean, they made her sit in the waiting room for 20 minutes.

Usually if a man goes in and says, my heart hurts, I’m having chest pains. They are like right in there. Like one of my sisters is a nurse and she says, even if you don’t have chest pains,  go in there and tell them you’re having chest pain so that you get seen. And this woman, she, could have died.  So can you address how women and especially women of

color that these issues happen to?

Rebecca: Absolutely. So, you know, the dismissal of women’s pain and

women’s symptoms is so extreme. It dates back to the hysteria problem that goes all the way back to the Greeks. You know, the word for uterus is the same word as the word hysterical, hystero. And so it’s baked into so many cultures.

And, you know, when you think about all the biases that we have and that

goes to not just women, but women of color, especially, you begin to see how certain personality characteristics and styles of communication and things like that yield to dismissal. And it’s so worrisome because people don’t even check their bias until you make them and I’ve seen it over and over again. I’ve seen it, you know, written into women’s charts.

You know, she sounded so anxious. She demanded this test.

You know, people don’t even know they’re doing it. That might be somebody who believes they’re a well-meaning practitioner. But because it’s been accepted that this is the way a person of that style behaves, it’s been accepted. Have you guys listened at all to The Retrievals Podcast, The Retrievals?

Bridgett: I had not, but you brought it up in your book.

Colleen: I haven’t heard it

yet.

Rebecca:  I mean, you know, this is Yale New Haven Hospital. And this is the reproductive endocrinology center there. And it never occurred to these folks that these women were really not getting their fentanyl. And that maybe the pain that they were describing was real, because they were so sure “oh it’s just pressure”, “oh I don’t know”, “oh this has never happened, so it couldn’t be that what

you’re saying is accurate” “it just couldn’t be”, that’s not how this goes.” It took finding a pile of empty vials for them to realize, oh my goodness they weren’t getting their fentanyl! 

Bridgett: yeah somebody was stealing their fentanyl and you hear about how many women told them they were in pain? And then, you know,

even for IUD insertion, they’re finally coming up with pain relief for IUD insertion.

And I think the whole deal was they didn’t want to give them the numbing medication just because it took 15 minutes to take effect. That’s what we hear from a lot of doctors that they’re just not believed. And then you’ve got the woman recently that went to the hospital. And they sent her home and she her baby in her car while her husband’s driving down the highway. And she was a woman of color and they didn’t believe her. So that stood out in the book.

Colleen: And I’m so glad you brought that up and why the book was really for women when women get sick.

So I really appreciate it.  Another important part of the book is your discussion on HIPAA. And there’s a really poignant story about Diary. Can we talk about that? Because I think it’s important for women to hear.

Rebecca: Absolutely.

So this is an example of how laws are meant to protect people,

but they don’t always work. And in this case, it was a tragic situation.

HIPAA is supposed to maintain people’s privacy. And, you know,

why do we need that? Well, you know, we could have a larger discussion about how privacy has been eroded because since the passage of HIPAA, which is in the 80s,

it’s almost it’s almost silly to think of trying to protect privacy when we know it doesn’t work

that well. And also people give their privacy away so easily on social media these days. But the idea was really clear. You’re in a medical situation. You don’t have to tell people.

You don’t have to share it with your employer. You don’t have to open yourself up to potential discrimination in a million ways. Your medical information is yours and it’s protected.

And doctors have a duty to protect it. That’s the larger umbrella idea of HIPAA.

So that works well, except it’s a little too broad sometimes.

For example, it’s supposed to kick in when you’re of age, right?

So that’s 21. Although sometimes it’s 18. Our culture is complex,

but you understand that that’s the line. Before that, your parent or your legal guardian can be part of a conversation about your… your medical care.

After that, not so much. Okay. But what we don’t really have is a good provision around mental health, around capacity. So in the case of Diary, Diary was living on the street.

Diary was dealing with both physiological issues and mental health problems.

And Diary ended up in a shelter in Brooklyn, New York. Diary’s mom could not.

access any information about how Diary was doing. And it was a person,

I don’t know if it was a social worker or somebody else, the person who was answering the phone at the shelter refused to tell Diary’s mom what was going on with Diary and said,

“well, you know, we can’t tell you it’s HIPAA.” And that ended in tragedy,

as you know. And so HIPAA just says that medical professionals can have discretion in a situation  like that. Well, I’m not sure that really gets us there because there can be pressures on a person.

Too much energy spent on one patient. Oh, is that person really a mental health professional, let’s say? Does that person really know?

Colleen: Shouldn’t somebody who otherwise would be the legal guardian, but for the age of the person, perhaps be given more access and more information in a situation like that?

It turned out to be an emergency and it was one. Right. And it ended so, so tragically.

Rebecca: So  that’s a really interesting example of how even when we have laws that are made.

We need to look at how they’re interpreted, how they’re executed, how things actually happen, because what could be seen as protective in this case ended up being detrimental to Diary.

Bridgett: No question. Absolutely. And I don’t know. I’m not a lawyer.

She is (pointing to Colleen) but I am not. But what about a conservatorship?

Is there anything that could have been done in that aspect or not with this situation?

Rebecca: So they tried. Diary’s mom and dad both worked in the court system. You know,

and so it’s not like they weren’t savvy to what the options were. It was just that the bureaucracy was so extreme. They just couldn’t get it. OK, so they couldn’t even

probably get it in time, heard in time. It’s just an example of how hard the system

is to get to work in your favor because HIPAA ideally is supposed to help,

but when put through the wrong situations, it can actually hinder your ability to get help.

Colleen: And another thing that I thought was interesting in the book, I mean, a lot of stuff was

interesting, but the portals, the electronic. information and how it’s really caused anxiety for about 99.999% of us who get results before we talk to a doctor.

What’s happening and why are we doing this?

Rebecca: Well, see, if you really look at our system, there’s all these new actors who are layered into it and they’re making money too, right? So the companies that are running these portals, they have made themselves indispensable to the system. And, you know,

there’s many millions of dollars at stake there. So if you ask a lot of doctors,

including the ones I interviewed, they don’t love it either. You know, it’s a barrier to good

communication. There’s so much stuff in there. It’s exhausting. Very few people even look at it or know how it works.

Sometimes you can message more than one doctor at a time. Get a team convo going.

No one does that. No one thinks about it. You don’t even know if it’s actually the doctor answering or if it’s somebody in the doctor’s office who steps in and does it. Every doctor has their own habits. A lot of them feel like it’s just another thing to check, like checking Facebook at the end of the day. You know, I have to check my email. I have to check the portal, I have to check this,

I have to check that. There’s so much to do. And so I understand how it started.

It started as, well, it’s really hard for specialists and a medical team to truly communicate about a patient. Everyone’s so busy. Everyone’s being managed from above. They got 15 minutes to see every patient. Do they really have time to have, you know, like a LA law type meeting about the case? Well, law and medicine, they always mix together, don’t they? Procedural TV shows, they’re all the same, right? Yeah. And so it’s like, you know, we didn’t have a mechanism that was easy for doctors to actually team up and work on cases together.

That’s how this started. It’s like checking your kids grades.

You know, it’s that same kind of thing. Like I have so much anxiety. Oh, my God. She blew that quiz. Oh, you know, I’m so upset for her. I’m so upset.

Whatever the case. Right. It feeds that anxiety, that click, click, click, dopamine rush or big

crash. And I mean, in reality, I do know some people who go, I’m not looking at that till the

doctor looks at it. But I think most people don’t have that amount of self-control.

Bridgett: I don’t.

Nope.

Colleen: I definitely don’t.

Rebecca: So the minute something comes out, I want to see what it is.

And then I’m Googling what does that even mean? And then it’s, you know, it’s not,

regular everyday language. It’s medical language.

Am I trained in that? Well, maybe a little bit from being a health advocate, but no,

not really. And it causes so much anxiety. Or just what about the way the tests are done?

You see abnormal and you start to flip out. You know, it sets the lights off in you.

Your doctor looks at it and goes, hey, that’s normal for you. Or, ah,

you know, that doesn’t really concern me. It’s not really that high. To what I think of as high.

But all you got to do is go. 0.1 over the line and you’re marked as abnormal. So you could see how that goes. And this is one of the reasons that HIPAA notwithstanding,

I think women patients should turn to their team. Let your friend check it for you.

If you can’t wait till the doctor comes, they might have a little bit more nervous system

regulation on the topic and they might be willing to look stuff up for you so they could take you away from that, that white hot panic to a little bit more equilibrium on the subject.

Bridgett: Yeah. And, you know, you  were talking about that about different

resources, and you include a lot of resources in your book for someone to go to.

So Colleen mentioned health.gov, but there’s other organizations that let’s say you have breast cancer, you’re diagnosed with breast cancer, and you did bring up just different ones in the book

that could help you in a situation. Do you mind sharing some of those with us?

Rebecca: Not at all. I am a big fan of disease specific organizations. Like where I live,

Bay Area Cancer Connections. There are organizations like that all over the country. The Multiple Myeloma Foundation. You know, there are certain organizations that really are experts in their disease. They know all the doctors. In fact, their advisory boards are usually made up of the leading doctors. So they have a line in to information, to research,

to the latest findings. So valuable. And mostly,

they’re nonprofit organizations, almost always giving this information away for free.

It’s right there. So there’s that. There’s the Patient Advocate Foundation, which I love so much.

They really help patients. They have incredible resources. They have all kinds of…

prepared materials with information about things like insurance, really well-researched,

well-written, smart, thoughtful. So there’s organizations like that.

There’s this wonderful organization I just did a fundraiser with in Washington,

DC called ABCD, which stands for After Breast Cancer Diagnosis. It wasn’t in my book because I just learned about them. They are the only peer-to-peer mentoring organization in the country that really that matches women with breast cancer to women who have had similar diagnoses and they vet their volunteers and they train their volunteers and it’s incredible what these women can do for one another. So these kinds of organizations exist. It’s so important when you’re stressing out to just take a breath and recognize that there is so much help available.

Bridgett: And that also makes me think

about the story you told in the book about getting your own MRI. And there are a lot of women who… have a family history of something. I mean, now they can detect cancers on many different types, but their insurance won’t cover that extra step. It won’t cover the MRI. It won’t cover the ultrasound. Is there something they can do to get that done or a supplemental plan? Would you have options?

Rebecca: So first of all, there’s so much work being done on this.

I just mentioned that fundraiser I was at. Well, there are some amazing women who have banded

together called Women’s Health Advocates, and they’re working on moving the needle on things like this. There’s a law called the Find Out Early Act, and that law is designed for exactly this purpose. We told women now that they have dense breasts.

They have to be told. That’s the new law since 2024. Well, now what?

Okay, if that’s 50% of women, which it is, then what are they supposed to do next?

They want to get those MRIs or those ultrasounds covered. That’s what this law is designed to do.

A lot of states have already passed a version of it, but it isn’t federal yet.

So I think people need to step on the gas on working with advocates,

big A advocates, meaning at the governmental level who are trying to get these laws passed through.

Because as I mentioned before, if you make the insurance companies cover it by making it a law, then they’re going to cover it. So I think there’s that. The second thing is, well,

what do you do in the interim if you’re waiting for that? I think you go to these disease specific organizations and you ask them, are there any clinics that are doing this? Do you know of any doctors that are trying to help with this? Is it possible to articulate the risk in a different way such that it would be covered because perhaps there is a bigger risk? Like you mentioned family history. Well, you know, there are different tests for what your actual risk is.

And if you, if a doctor helps you articulate it, let’s say you just found out you have a higher

risk. You’ve got to reassess your risk. And if you do reassess the risk,

according to the standard tests that they use, you might get it covered.

Bridgett: Yep. And being proactive and knowing what’s out there. Colleen, you get denied,

even though you had dense breasts, weren’t you denied an ultrasound?

Colleen: I was, and I paid for it out

of pocket.  And still, the doctor wouldn’t do it.

Bridgett: Yeah. Yeah. She was willing to pay for

it.

Colleen: Yeah. I had already paid for it.

Rebecca: Is that Vanderbilt? Yeah. Yeah.

Colleen: Yeah. Again, like, and I also didn’t know when I was reading your book that sometimes local county hospitals.

Yeah. You can’t afford insurance. There are still some options you can go to,

which is like a local county hospital, which may have a certain number of people that they’ll help.

Rebecca: That’s right. Without coverage. And so again, being proactive and having already learning about it before it becomes a problem. Yeah. And a lot of people just, you know, it’s hard enough in the day

just to get through it. So it’s hard for people to say, okay, be proactive, but your life can

change in a moment. Well, right. And I mean, look, it’s really hard to say to people, be proactive

about something that hasn’t happened yet. Right. I get it. And I understand. And also, you know, a lot of people will call this a tough topic. I mean, my book looks like pink lemonade. I don’t think it’s depressing, but I understand why people don’t want to deal with this until they have to.

So what does that mean? Well, what do you do to be proactive before you have the problem? I think it’s take stock of your own support system. Take stock of what you have,

including your health insurance. Know what’s covered. Know what isn’t covered. Understand what diagnostics are covered versus what treatments are covered.

You know, pay a little bit of attention.

You know how much car insurance you have, don’t you? You know what your deductible is? You know what would be covered if you have an accident? Why is this different?

Bridgett: Yeah. Absolutely. And then also just not knowing the cost. You don’t go to a place that doesn’t have the price and the menu. But most of the

time you go to a place, you know what something is going to cost. You have a surgery you don’t know

till after. Sometimes you know before, but most of the time you don’t know till after it’s

happened.

Rebecca: Right. Or they give you a sheaf of papers this thick and they’re like, oh, can you sign all these things? And you’re like, okay. Yes.

Colleen: And sometimes facilities will have a different price

for insurance coverage and out of pocket.

Rebecca: Often. Make sure to ask that.

Always ask what the self-pay price is.

Colleen: Absolutely. Always ask. And you also,

though, included a checklist in there as well.

Bridgett: And there was the other person, the author was the

last name Allen who had an 11-step checklist and you do as well, which I thought was really great, you know, and I actually wrote it down. But I mean, there’s so much information

in your book. 

Colleen: obviously the one thing we want to make sure that we also cover is

insurance and the new menopause rules and everything that’s changed. You know, the black box has

been removed. Women go to doctors and some doctors don’t know that much about

what options are out there. What can you say to women who think, well, this is going to be

something that’s not a necessity. It’s just something that would be nice if I could be on an HRT or

if I could have some, some kind of treatment for my menopause. Do you get women

that come to you with that?

Rebecca: I do. Yeah, I do. You know, it’s, it’s sort of an interesting thing,

right? Because menopause is not an illness.

And my book is titled “When Women Get Sick.” And most of the advocacy that I do is when somebody has been

diagnosed with a specific disease. But that said, I am very much menopause adjacent,

partially because the age of the women who typically are getting these cancers and serious

diagnoses are about that range. Although that said, there are more and more younger women being diagnosed. not just with breast cancer, but with autoimmune diseases and all of those things.

But yeah, I actually have been lucky enough to get to meet and talk with quite a few of the women who are working on menopause. And it’s really the same thing, right? It’s big A advocacy.

We’ve got to get medical schools to teach this. We’ve got to start from the beginning. Medicalnschools have to teach this so that doctors know what it’s about, so that they know what to do and they know what to say. We need so many more studies. We know that the old studies are flawed.

And we have some new studies, but we don’t have as many as we’d like to have. And that goes to a really big problem in women’s health, and that’s the research gap. And we’ve all talked about this, you know, the menopausal women talk about this all the time, and they’ve done such an amazing job on the messaging and really raising the bar of us having this conversation.

If women weren’t even part of studies before 1993, well,

what are we talking about? It doesn’t mean it got better in 1994 immediately. There are

longitudinal studies in general, right? So we’ve got to…

down on all that research, we’ve got to really pay attention to where those dollars are going.

It’s such an important thing. And, you know, again, just because we are starting to understand that a female heart attack is different than a male heart attack, and it’s taken way too long for us to understand that. And women have lost their lives because of that, right? It’s not a joke. It’s serious. But we still don’t know where is all the money going? You know, it’s not only one thing. And so we need more studies. And I know there’s a lot of push.

And like I said, that’s big A advocacy and it needs to happen across the board with menopause and with other diseases. Autoimmune diseases are such a big deal. They take forever to get diagnosed and 80% of the people who have them are women. So you could see how this all fits together. And that’s why we’re all working together and we need to.

Bridgett: it was so surprising too, I’ve always felt that The U.S.

system was the big problem. But when you had in the book that, no, it’s kind of a global problem.

Rebecca: Diagnostics take longer for women across the world, not just here. So,

yeah, we have our very own very, very, very idiosyncratic insurance beast.

Our third party payer system is a messy mess. But there are still problems that exist.

I’ve talked to women in England. I’ve talked to women in Spain. They all feel unheard and not as cared for as they want to be. So it isn’t just here. You’re right.

Colleen: Well, I think if we’re going to end this on being proactive, I would definitely say the first step when people are trying to figure out where to go is to get this book because you have so many resources, so much information,

and it’s really valuable to just keep it, give it to a friend who may be going through

this. That’s another thing that you can do when you don’t know how to help somebody who’s going

through it. Say, here, read this. This is going to help so many people. Thank you, Rebecca. We really appreciate you coming on for writing this book, for being an advocate, and for all you’re doing for women’s health. We appreciate it.

Rebecca: Thank you guys so much. I feel so lucky to get to be

here in this conversation with you.