Just ahead on Black Issues Forum, breast cancer touches one in eight women, but for black women, the fight can be even harder.

We take a look at the impact of funding cuts, research disparities, and the emotional toll of a diagnosis, and share stories that remind us that the fight against breast cancer begins with awareness.

Coming up next, stay with us.

Quality public television is made possible through the financial contributions of viewers like you, who invite you to join them in supporting PBS NC.

[upbeat music] ♪ Welcome to Black Issues Forum.

I'm Kenia Thompson.

Breast cancer doesn't just touch lives, it changes them.

From early detection to treatment, access, and recovery, the journey is often marked by both pain and perseverance, but beyond the personal battle, there's a broader fight that's happening, one that involves research, funding, and policy decisions that directly impact lives every day.

In honor of Breast Cancer Awareness Month, we're acknowledging and sharing stories of that fight.

Today, we're joined by two incredible women who understand that fight inside and out.

One we'll hear from later, but first, we have North Carolina Senator Sydney Batch, a breast cancer survivor and an advocate for equitable health care and research funding.

Welcome to the show.

Thanks for having me.

Of course, you know, we encounter Breast Cancer Awareness Month every year, obviously, in October, but it's a fight that happens all year long for so many people, and I'd love for you to start by sharing your story with us, and then kind of talk about some of the work that you do as a senator.

Yeah, well, thank you for having us, and of course, you're talking about something that's obviously very personal, near and dear to me, but also so many other women.

Yes.

So, I ended up being diagnosed with breast cancer, my very first mammogram, and so I was 39 years old, thinking I was going to go in to just do all of the things you're supposed to, and while I did have a family, I have a family history of breast cancer, I didn't think that, obviously, it was going to be me.

So, go in, had the test, and at that time, I was actually running for the North Carolina House, a really competitive district for the first time that I was running for office.

So, it's never, getting cancer is never a good time, but that was the worst time.

Yeah.

What I found, though, in my journey is that I didn't step back from politics.

I continued to run because I, unlike so many other people, had supports that people wouldn't be able to rely on, and at the time, my boys were five and seven, and so when I heard that diagnosis, the first thing that I heard, and the only thing I thought about was, was I going to live long enough to dance with my sons at their weddings?

Yeah.

And so, that was really tough and difficult, but I had a lot of resources that other women in North Carolina and across this country don't have to be able to help me through that journey, and so I stayed in the fight and have used it as a platform because there's so many other women who do not have the ability to speak out and to fight for, obviously, legislation that would be beneficial to them.

Do you mind me asking, at what stage were you diagnosed?

Was it earlier on, or was it?

Yeah, so fortunately, it was early on, so it was stage one.

Okay.

And so, I went through, I had two mastectomies and then subsequent radiation and reconstruction, so in a year, that's a lot of surgeries and treatment, but because of early detection, it saved my life, right?

And so, getting early screenings is one of the best things that you can possibly do, and I know people are very fearful of saying, "Well, you know, I feel something, it's not right," or "I'm too busy and I've got a hundred other things to do," but I would say is that getting diagnosed at stage one versus stage four completely changes your life and your job.

That's a different story.

When you look at the perspective you have as a survivor, someone who's gone through it, and then also as someone who understands policy, talk about where maybe you realize there are lacks of gaps for resources, for advocacy, for funding, and access.

Yeah, great question.

So, one of the things that became very obvious to me when I was getting treatment at UNC was how sparse the treatment is across the state of North Carolina, right?

We have so many health care deserts where people can't get the treatment that they need, and so while I live in Wake County, I can throw a rock and hit five doctors in one shot.

There are so many women that were going through treatment with me over at UNC.

They were coming from everywhere across the state, and they weren't able to recover in their homes.

They weren't able to get treatment in their backyards and sleep in their own beds.

They were at the Ronald McDonald House or other local hospitals, and when you have to go through radiation day after day after day, they were here having to either quit a job, take leave, and hope that they can spend the money that they need to to live here to get the treatment, and so one of the things that I think is so important is for us to have access to health care across the state, and that's why Medicaid expansion was so important and that we're fighting to actually keep at this time as you see the federal government just decides to slash every damn thing, and now we're in a position where we're not going to be able to potentially help all of the North Carolinians that have been added to Medicaid.

So, let's talk about that.

We've seen federal cuts.

We've seen some state cuts around the country.

What impact does that directly have on access to health care, on treatment here in North Carolina?

Yeah, a huge issue.

So, right now, North Carolina hasn't even funded Medicaid rebates, which means the regular population of three million North Carolinians.

Funding has been cut with regards to the reimbursement rates for providers, so there are some providers who are already operating on a shoestring budget that will no longer see patients because of the cuts that have happened because the legislature has not passed a budget and funded Medicaid.

Then, on top of that, what you have seen in the national level is that NIH has had to cut an outrageous amount of grants.

If you were in a situation where you had anything that said "woman," there was like, I think there were 26 different words that they would flag and then just cancel these grants, right?

And so, I think 700 grants have been canceled by the NIH, and when we're talking about breast cancer and breast cancer disparity, black women disproportionately die at higher rates than white women.

And so, you're looking at getting rid of programs and research that's actually treating and would save more women's lives, in particular black women, and all of them are being cut because, for whatever reason, people are sensitive about the fact that you can't care about diversity, equity, and inclusion, and health care matters to everyone, and yet they are just going ahead and slashing fundings.

And you mentioned black women have a 40% higher mortality rate.

Another thing that I've noticed, you know, along these years I've had cancer around me experiences, but you know, we have to meet a certain age for screening.

We have to have a prior family history, but when we look at the statistics, what was it?

73% of women had no cancer family history, right?

So, these are first-time cancer patients and families.

How do we advocate for health insurance companies to understand that this can't wait for 40 years old to start screening, right?

This can't be a precursor because I had a family history.

Is there any work being done to level out that playing field?

Yeah, so one of the bills that I proposed and filed this year and hope to get across the finish line is it's called Save More Tatas.

Sometimes you got to give a title to my fellow legislators for them to pay attention.

And so, with regards to that, it was a bill that talks about dense breasts.

And so, one of the other things and the disparities among black women is that younger women and then also women of color, in particular black women, have more dense breasts.

And mammography doesn't catch cancers as often.

And so, we need to have additional screening.

The challenge that we have with regards to that is that insurance companies will say a mammogram, okay, that's preventative.

We'll go ahead and we'll pay for it.

But when it comes to an MRI that costs $700 or an ultrasound, they say bridge too far.

Apparently $700 is not what they value our lives, right?

It's not worth my life in saving it.

And so, that bill would actually require for every single person who has CD, the highest level of density in their breasts, to be able to get ultrasounds and MRIs.

And it would be paid at parity, so the same level as a mammogram, so that women don't have to decide whether or not to pay their bills or get their prescription medication or take their kids to school and buy them clothes versus trying to save their lives.

And so, that bill would actually help with regards to additional screening and diagnosis.

Well, I want to thank you for that personally because I have, that was my story.

At 17, I found a lump.

It was pre-cancerous.

Thankfully, it wasn't.

But 19, found my second one.

Found out that I have, I had dense breasts and so had a reduction, but fought for that reduction.

It took two or three years before I was able to have the reduction.

But that seemed to have eliminated the issues that I was experiencing.

I did find one more at 21, but since then I've been okay.

But it's scary.

It's scary.

And it was scary for my parents to have to fight insurance to get something approved that shouldn't have been a question.

Right.

And I tell them all the time, if you're not going to do it for the morally right reason, you should at least do it for the economic reason because finding my cancer at stage one is so much better and less expensive and the right thing to do than finding it at stage four.

And so, I just continue to push this narrative and the conversations and the policy.

And frankly, we just have to do that more and tell women that you've got to fight, and even your insurance companies, for the diagnostic treatment and care that you need.

Because again, if you have dense breasts, mammograms can miss 50% of your cancer.

Exactly.

So, why are we not doing what we need to to save more women's lives?

Yeah.

I want to talk a little bit about research.

We know North Carolina is a huge research state, but funding is cutting some of that out.

Are there any plans or hopes to try to gain that control back in research?

Yeah.

So, with the Research Triangle Park and what we have with Garstall of our universities, UNC just lost 26 of their research grants and 16 of a subset of other research grants and projects that they're working on.

The reality of the situation is the federal government is failing us at every single turn.

And I know that a lot of people didn't trust government, but when you break it, that's the reason why people don't trust it.

And so, those lawmakers at the federal level who are funding NIH need to come back, fund, open the government, God forbid, do your job.

But more importantly, go ahead and fund it so that we can get research projects back on track.

And I'll give by way of example, you know, I was diagnosed seven years ago and I've been in remission the entire time, which is fantastic.

I'm very happy about.

Good.

But when I first got tested for genetics to see whether or not there was anything regarding genetically something going on with me, they tested I think five or seven genes.

I got tested seven years later recently with my oncologist because he said that the research has caught up with a lot of other types of genes and it's up to 70.

Wow.

So within seven years, research saves lives.

All of the trauma, all of the loss, all of the women who have died and come before me have done that and their research and what they've done has saved my life and saved so many other women's lives.

And so we have to invest in research.

And I know that some lawmakers, if you haven't had somebody that, you know, personally that's been affected by it, it may not matter, but they just need to dig deep and realize that, you know, in this world, empathy goes a long way.

We need to go ahead and save lives.

It does.

Well, thank you so much, Senator Patch.

I appreciate you sharing your story and for advocating for us all.

Well, thank you very much for having me.

Of course.

Before we continue and meet our next guest, let's take a moment to hear one survivor's story, a voice that reaches beyond statistics, beyond policy, beyond the clinic.

Video is courtesy of WebMD.

Take a look.

Women have no idea most times that there is more than one kind of breast cancer.

And as Black families, we don't often discuss our health and our history.

So I'm Mayima Carmo.

I am a 17-year triple-naked breast cancer survivor, thriver, warrior, and unicorn.

I was born in Liberia, West Africa, and immigrated here several times.

Although we lost everything we owned physically in the war, I learned that love surpasses anything else.

I knew that it wouldn't be a normal life.

My drive comes from knowing that anything's possible and that I can inspire that in other people as well.

Triple-naked breast cancer is one of the most aggressive type of breast cancers a woman can have.

It's typically found more in Black women, younger women.

And until a few years ago, there was no treatment targeting triple-naked breast cancer at any stage.

My partner didn't understand what cancer was, so we ended up parting ways while I was going through that diagnosis and treatment.

It was very painful.

And then I had a three-year-old child I had to explain to about what was happening to me.

And I was so scared.

I'm like, "I can't leave her.

What do I do?"

The mental part is hard because no one discussed mental health at that point.

No one discussed the trauma of having cancer.

And especially in Black cultures, we don't discuss certain things.

We just keep it quiet.

In my culture, they called it the "C."

Mayima has the "C."

No, I had cancer.

I'm one of the most capable, strong people you'll ever meet.

But I was totally overwhelmed when it came to cancer because nobody had talked to me about cancer before.

Nobody had taught me about what to think about or what to expect.

You had to pick the right oncologist and the right surgeon and the right radiologist.

But I don't know how the radiologist and the surgeon and oncologist are different.

I don't know these things.

The thing that's also hard is the burden, unfortunately, is on the patient.

Nurses are busy.

Doctors are busy.

People are overwhelmed.

Because I had triple negative breast cancer, and that subtype had no targeted treatment at that time.

And even today, we don't have any early stage breast cancer interventions for triple negative.

I was told, "We're going to give you all that we have that's available on the market, but it's not targeting your genetics and your DNA."

And the average recurrence rate is five years.

And with women who are younger and Black, it's more aggressive.

So you could live five years or you could live longer.

And so imagine hearing that diagnosis at 32 years old.

I not only lived past those five years, I live five more and five more.

And just last month, I hit my 17th year cancer-free.

I'm still manifesting the life I want and dream of.

And I can also inspire women who are going through triple negative breast cancer to understand that you have a diagnosis, yes.

It's a traumatic, yes.

But you also have the opportunity to really create life on your own terms now, right?

And that's magical.

Not enough people are fighting for a woman like us who are Black and Brown who could die of this disease.

Black women die at a 40% higher rate from breast cancer than their White counterparts.

We're diagnosed at later stages, have more aggressive breast cancers, have more comorbidities, are offered clinical trials less, biomarker testing less.

There's so many disparities that exist for Black and Brown women.

So there's a legacy of mistrust that's happened.

But if you don't look at how you could be a part of the legacy of the future, you don't change that future.

People told me, "You're crazy.

You're never going to do that."

And I said, "Watch me."

I built Tiger Lily and I had no staff.

I just funded it myself or I had walls or little fundraisers.

We do training, resources, education, empowerment.

We give hope.

We give love.

We give hugs.

Imagine if you had a space to go to where you went to a website and you saw people that look like you and you met patients that would hug you and say, "I'm going to hold your hand the entire journey."

People saw the impact of having Black women speak their truth and not be silenced and not be told, "We don't want to hear your voice."

My mission is to teach every single woman I meet, White, Black, Brown, and our other, that you have to be your own best advocate.

You have to be the one that asks for certain things.

So it's important to me to have Black women understand the power of them being educated, being empowered, knowing what to ask for, knowing when to ask for it.

My goal is to see that in this lifetime, we erase a lot of health disparities and also to see that we erase TMBC as a thing that people have to die for.

Until we get there, I'm not going to stop.

I'm unstoppable, as is my team.

I want to create a world where our dreams are born every day.

And if you're in treatment, there is still hope.

And there are people like me and many others who are fighting for you all the time.

- Well, we just talked about the importance of research, funding, and fair policy, but behind every number and headline are human lives and deeply personal stories of strength, like the one that we just watched.

Joining me now is Jacqueline Jeter, a breast cancer survivor whose journey reminds us that healing goes far beyond the physical.

Jacqueline's story is one of faith, emotional resilience, and rediscovering self after diagnosis.

Thank you for being here.

- Thank you for having me.

- Of course.

So, you know, you just heard Senator Batch share her story and the work that she's doing to advocate.

How do you feel hearing about research funding cuts, about, you know, people's lack of understanding of what we need when it comes to cancer awareness and diagnosis?

And share some of your journey.

- Well, I'm a scientist by career in pharmaceutical development.

So when I hear about cuts, I think about what if I wasn't able to get the treatment that I had?

I think about years ago when people didn't have treatment and one of the biggest things was surgery.

And I think about those to come because whereas the numbers are getting better as far as they're trending better for survivorship, it seems like, and I don't know if it's because I'm more sensitive to it now, that there are a lot of people I know at a lot of ages, earlier ages, that are getting diagnosed with cancer.

So they're gonna need that research.

There are advances.

I was diagnosed in 2021 with stage 1B with the metastasis to a couple of lymph nodes.

And so in that time, since 2021, there have been advances in research where if I've been diagnosed now, I wouldn't go through all the chemo and the radiation.

I might be able to take a pill or be more targeted because chemo itself kills every cell in your body, good and bad.

So to make it better for people and for women and for especially for African American women, because we, our bodies metabolize drugs differently, that we have the ability to be our best selves going through this because it's very debilitating emotionally and mentally.

It's very taxing.

And speaking of taxing and being so heavily laid on our spirit, on our faith, I've watched your social media journey and I've seen the posts that you create.

And a lot of what I see, the thread is faith and is pushing through, is persevering.

Talk about how do you find faith and strength during a time like that?

Oh, that's that question before.

My faith has always been very strong.

It was instilled in me since I was younger.

And so I've always had a positive outlook about life no matter what.

And I see challenges as growth points.

So before, you know, it was a point, how can I grow through this?

And so I had to really, the other thing that was a couple with faith is really perspective.

One of my own personal quotes I have in my mirror, I see and say every day that no matter what happens to me today, my perspective will have the final say.

So I'm going to make it a good one because I can look at, you know, the things sitting on that sofa and getting that call that says the diagnosis or the results of the pathology are invasive ductal carcinoma, metastasis lymph node.

For like 30 minutes, I planned my funeral, I did my eulogy, I did all my update of everything, of my legal documents.

I did that all in my head because I was freaking out because the first, you know, your experience is going to be fear.

Why me?

You know, why is this happening to me?

I did this.

I mean, I worked out every day at 8, 80, 20.

And, you know, why has this happened to me and not somebody who's not doing anything?

You know, is there a family history for you?

I have a family history.

I have two sisters that had breast cancer.

Okay.

And they're no longer with us and they had different experiences.

Again, research, but also we have to, the mindset piece comes in as well.

And so I teach a lot about having a growth mindset.

So I had to reflect that then.

But the biggest thing was perspective.

After that 30 minutes of going through the fear and the drama and I just kind of being just shocked and then just kind of coming back to status one and said, okay, I got to call the nurse navigator back.

I never, I thought about this when you gave me the questions.

I never, ever thought about that.

I was going to die.

Yeah.

It's perspective.

And so my whole thing was I'm on a faith.

I want to live and declare the works of the Lord.

I want to live through this.

I want to be the voice for someone who's voiceless and those who have gone on, who are voiceless.

I want to be the one.

I'm not going to be a statistic in my family, the third person.

I'm not going to be that person.

So my focus was different.

Yeah.

And your environment too.

Right.

So when we think about who's around us, where we place ourselves, what we're reading, what we're eating, all of that plays a role in that perspective, that outlook and that mindset too.

And that was key for me because I listened to a podcast anyway, but I had, I loaded my phone with podcast and audibles and YouTubes because I knew like, again, I'm a scientist.

So I had researched things that can happen along the way with chemo and chemo is cumulative.

So when you get to the end of your cycles, it can affect your vision and it did.

So I was thinking like, are my glasses dirty?

What is going on?

I was preparing myself because John Maxwell has one of his books, the 15 valuable laws of growth.

This is one of my favorite books.

One of the things he talks about is the law of environment, like you just saw environment and how it's important.

So I kind of set that environment up for success and those persons who were friends or acquaintance who met well, you know, you're going to be okay.

My mom had this, she died.

Okay.

I don't want to hear that.

Don't want to hear that.

So let's not talk about that right now.

So I had to kind of control that.

With that, people do make comments a lot because there's a lot of misunderstandings when you're going through it and afterwards.

But I want to ask the question, what are some misunderstandings about survivorship?

People think that, okay, oh, that's done.

You finish your treatment, you know, you're back out and outside, so to speak, because I was diagnosed in 2021, which is, you know, still kind of in pandemic time.

And so I couldn't have a lot of people around me anyway.

And then with my immune system being shredded, I couldn't have a lot of people around me.

So when that kind of was, I was progressing and getting back to strength.

They're like, oh, you're back out, you're back to normal.

And people think you're back to normal.

You will never be back to normal.

Again, cancer or chemo kills every cell in your body, good and bad.

So all those muscles I had and whatnot before, they were just like gone.

I've got to rebuild them.

And so survivorship is just understanding that that person's always going to be different, no matter how they look physically, even how they show up mentally, emotionally, you can never unhear the word cancer.

So even if you're like going up the stairs, you're like, oh, I have a pain in my leg.

Is that because I'm getting older?

Or is that cancer?

You know, you're always on nerves with that.

And I think the word cancer makes everyone feel uncomfortable.

And I think the biggest, I guess, element of the misunderstanding is not knowing how to speak to someone, you know, not wanting to bring it up and not wanting to say the wrong thing.

And so a lot of that may come out as seeming insensitive.

But I think if we think about empathy versus sympathy, right, empathy may I may not know or have gone through it, but I could understand that this has been difficult for you.

When you look ahead and then 2021 and now even the thought that something could come back, what keeps you pushing forward?

What keeps me pushing forward is one, having my sisters.

I had a niece, two nieces actually after me that were diagnosed with cancer.

So understanding what's going on in the genome in my life and my family line, what keeps me going forward is to be that voice for someone else.

Because support, I had an amazing support system, but I met people along the way who didn't.

And so to really be that advocate, again, as being a scientist, I knew some of the questions to ask and just helping shape some of the, really shape some of the interactions that my physicians have now with their other patients, because they're like, that's a good question.

No one's ever asked me that before.

I'm going to put that on this to discover with someone.

So being that voice and being that person that really is there to champion and advocate for research, for women, for getting us as black women to clinical trials, because those are important.

Because the more we have that data, the more we'll be able to have better treatments for us.

Well, thank you so much for sharing your journey.

Thank you for being there for the women that need you.

And I also want to quickly just say, it's not just a female disease.

Men do get breast cancer, but we are here to share your story.

So thank you, Jacqueline Jeter.

Thank you very much.

I appreciate it.

And I thank you for watching.

If you want more content like this, we invite you to engage with us on Instagram using the hashtag #blackissuesforum.

You can also find our full episodes on pbsnc.org/blackissuesforum and on the PBS video app.

I'm Kenia Thompson.

I'll see you next time.

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