From WXXI news.

This is connections.

I'm Evan Dawson.

Our connection this hour was made with a cancer research project.

Eden Tanner is a chemist in Mississippi.

He's been working with colleagues in Ohio developing a novel approach for treating glioblastoma, an aggressive form of brain cancer.

Their grant had been awarded through a program that was initially intended to diversify the biomedical workforce.

The Trump administration is canceling it without examining whether the research is effective or needed, Tanner told The New York Times this week.

Quote, I think people should know that research that they would probably support is being canceled.

I would like to cure brain cancer.

I think that is not particularly controversial.

End quote.

This week, The Times published their deep dive into medical research cuts.

I'm going to read a little from their report.

Now, quote, in all, the NIH, the world's premier public funder of medical research, has ended 1389 awards and delayed sending funding to more than 1000 additional projects, The times found.

From the day President Trump was inaugurated through April, the agency awarded $1.6 billion less compared with the same period last year, a reduction of one fifth.

The impact extend far beyond studies on politically disfavored topics of the moment and Ivy League universities like Columbia or Harvard.

The disruptions are affecting research on Alzheimer's, on cancer and substance use and abuse, to name just a few.

And studies at public institutions across the country, including in red states that backed the president, end quote.

Doctor Harold Varmus is a Nobel Prize winning cancer biologist who served as director of the National Cancer Institute 15 years ago.

He said that the country is going to be mourning the loss of its position as a cancer and medical research leader.

So we wondered what is happening locally with many types of cancer on the rise.

What is happening to cancer research here?

What is next?

Our guests are going to take us through the answers to those questions, and they are just the people to do it.

I think.

Doctor Jonathan Friedberg is director of the Wilmot Cancer Institute.

Welcome to the program.

Thanks for being with us.

Great to be here, Evan.

Also with us is Doctor Charles Cayman.

Charles is associate director for community outreach and engagement at the Walmart Cancer Institute, and an associate professor in the departments of surgery and Psychiatry at the University of Rochester Medical Center.

Thank you for being here.

Thanks so much for having me.

And Emily Hayes is with us, program manager for community outreach and engagement at Wilmot Cancer Institute.

Thank you for being here as well.

Thank you for having us.

And there's something that you're going to hear this hour.

You're going to hear the phrase NCI designation.

This is a big deal locally.

It's a big deal to Walmart.

The National Cancer Institute designation means what doctor Friedberg.

This is an amazing accomplishment that involved dozens of our investigators and our entire community support over an eight year period of time.

In 1971, President Nixon signed the Cancer Act, which really was the war on cancer.

And a major component of that act was the creation of centers across the United States that performed the highest level of research and clinical care for patients with cancer.

This has continued since that time, and we are now one of the 70 centers that have achieved this designation.

And the designation is a grant.

So with that designation comes over $10 million of research infrastructure support.

It evaluates our research programs.

Our clinical trial accrual, as well as education and community outreach and engagement.

It's an extremely competitive process that involved 1400 page written application, followed by a two day site visit that the NCI brought people to Rochester, and it's really considered the crown jewel accomplishment of cancer centers across the country, especially with concerns over funding.

We were overjoyed to hear and announce in March that we are now the 73rd NCI designated center in the country.

This puts us in the top 4% of cancer centers nationally, and we look forward to using this support moving forward in a variety of directions.

So when you read the headlines in the last few months, one of the conclusions that the lay public may have is, well, cancer research has gone away at halting.

I don't want to overstate it.

I also don't want to understated.

So I want to ask our guests, to the extent they can, to talk a little bit about what we're seeing.

I mean, Doctor Friedberg, when I read the New York Times study of this, I'm left with the impression that whatever the reason for the cuts, the cuts are not just affecting sort of culture war issues, they're affecting actual research.

They could affect more research.

It could halt development of treatment cures, etc., for various types of cancer.

And it's something that I think the public is not as fully tuned in on because there's so much happening.

Is that a fair read?

How do you see it?

I think that we're particularly concerned about the future of cancer research, and there is a great deal of anxiety among investigators, among trainees.

And as you point out, the public, some of the statistics that you stated from The New York Times might be a bit of timing.

whenever there's a change of administration, there's often a slow down to grant processing.

And clearly that occurred in perhaps an exaggerated way over the last few months.

There seems to be some semblance of normal operations returning at NCI.

a number of council meetings are occurring, which is the final step before grants are released.

And at our university, we have seen several new grants come in which we view as a very positive sign, including our Cancer Center support grant that I referenced earlier.

That was one of the first ones that we saw.

That said, there clearly are threats looming on the horizon.

The budget proposal that, the president, presented to Congress includes a nearly 40% cut in funding to the National Cancer Institute.

Historically, the National Cancer Institute has enjoyed bipartisan support.

So we're hopeful and optimistic that Congress will see to it that those cuts don't aren't enacted.

But the very fact that at this time, when there's so much promise in cancer, that there would be even a proposal that would cut funding for cancer research, given the accomplishments that we've seen, is very jarring.

Is there anything that you've seen that indicates, hey, this administration doesn't want to cut the actual research.

They're looking for waste, they're looking for frivolous spending.

And some of this makes sense.

Or do you see this as rather draconian and a really deleterious effect?

I think with any large agency, there are always opportunities to look for efficiencies.

And I also think that it's okay and healthy periodically to think about doing things a new way.

That said, if you look at what the National Cancer Institute has accomplished over the last 30 years, it is one of the crown jewels in our government.

For example, since the early 1990s, when I was a medical student, the mortality rate for cancer in the United States has dropped by 34%.

Much of that is due to enhanced prevention and screening, as well as new therapies, including exciting immunotherapies and precision medicine.

Over 90% of the new therapies have roots at that were funded by the National Cancer Institute, including at the National Cancer Institute.

Designated centers.

So the, accomplishments that the NCI have has demonstrated with that mortality drop has a profound impact on American health, and it also has put us as the global leader in cancer research.

in in an era where there's so much promise.

So I think that there are a number of reasons why it's important that we continue to fund cancer research at a high level.

We will lose our superiority globally, and that's a threat to innovation in the United States.

And the concern is, is that clinical trials of promising new therapies could be interrupted if these cuts go through.

So let me ask Charles to kind of weigh in to and because I know listeners may be wondering, doctor came in about specific impact already and maybe it's too early to say.

Maybe we are already seeing it.

What would you say to people who are wondering, okay, a 40% cut in NCI?

Does that mean anything going on locally is affected?

What's the answer?

I mean, I can speak to my personal experience.

I'm a health disparities researcher by training.

I have a line of research in immunotherapy disparities.

As Doctor Friedberg alluded to, and also a line of research in LGBTQ disparities.

And so that work has certainly been disrupted.

I've had two grants terminated personally, and one that has caused, you know, a setback in terms of scientific progress for my research, but also, I think some lack of efficiency and some waste in terms of the grant dollars already invested then being wasted because the science can't go forward.

So let me follow that point here.

By May 1st, the federal government had announced the termination of nearly 1400 awards with more than $820 million in recent funding.

And as The New York Times reports this week, the first wave of cuts not all.

The first wave was primarily based on language.

The NIH is, according to the times, the NIH scoured grants for key words and phrases.

Those key words and phrases included transgender misinformation, vaccine hesitancy, and equity.

And they immediately ended funding for those projects and initiatives.

And in a way, I mentioned at the top here, research into is a pronounced glioblastoma glioma, Leo Blastoma.

So, you've got Ohio State, you've got Mississippi working together.

But because some of that funding came under an initiative to diversify the biomedical workforce, the Trump administration said that's we're not doing any more of that glioblastoma work.

And the researchers are saying, well, we're doing really important work here.

And the administration, that doesn't matter.

Like it was under this umbrella.

So the first wave affects anything related to equity, transgender information, misinformation, vaccine hesitancy.

And the administration would argue that's a sound way to redirect its priorities, because those that kind of funding was outside the scope of legitimate.

And they've said this legitimate scientific research.

Do you do you think that's fair?

Well, it's a very it's a very complicated question.

You know, we have to be aware of how cancer impacts all communities, right?

And we know we have decades of science showing that cancer does not impact all communities equally.

So we have to attend to disparities that affect specific communities in terms of cancer incidence, cancer mortality, cancer prevention and screening.

And so I think making a broad cut based on terminology ignores the reality that we have scientific evidence for disparity science, and that science needs to continue for us to affect the health and well-being of all cancer patients.

Is that why the funding in your department was a couple of those projects, as you mentioned, was cut?

Correct, yes.

Okay.

Can you tell us what that what you were working on there before the funding was cut?

Yeah, I can speak to it very briefly and then we can revisit some other topics.

But, you know, I was working on a study looking at collection of sexual orientation and gender identity data in cancer care practices across the country.

That was a study to really help practices, to ask people about their identities more safely, respectfully, and to use that data to improve cancer care.

And I had a project looking at tailoring an intervention to help LGBTQ cancer patients and caregivers to cope with their cancer better.

And that was a project that was really brought to me by the community.

They asked me to do that work.

And so, that was particularly meaningful.

Okay.

And I want to make clear as well.

The work that Doctor Kim is talking about is a it's a slice of where some of the cuts are directed.

It is not the bulk.

So when we talk about a 40% cut in NCI, when we talk about, you know, tens of millions, hundreds of millions of dollars, nearly $1 billion in cut already.

It is not primarily on issues related to trans research.

No, it is not.

In your office, those were the projects that were cut.

But that's as the times reports.

It gets a little more opaque when you drill down into some of the other.

But there is Alzheimer's research being cut.

There is cancer research more broadly being cut.

And, the times tried to get administration officials to talk about it.

Many would not.

Some spoke off the record for fear of retribution.

So I mean, some of it's pretty clear.

Some of it's still pretty opaque.

But Doctor Friedberg, in general, I don't want to present the idea to the listening audience that the proposed cuts or the cuts that are in effect, are just narrow culture war cuts.

I mean, they're more broad based on that, aren't they?

The proposed cuts, for sure.

Yeah.

you know, too, you can't cut the NCI by 40% without having a devastating impact on either the cancer center's program or clinical trial accruals through the National clinical trials networks, or fundamental research that's going on in laboratories across the United States.

you know, that's really the core of what we do.

And absolutely, this would be a broad, very detrimental direction.

So we're going to spend a lot of the rest of this hour talking about the work that's being done in the cancer research and understanding cancer and the rise in different types, and why and what that means.

And, you know, and there's a lot of, as Doctor Friedberg will tell you, there's a lot of good things happening to better understand and to help patients.

So we will get to that coming up here.

And listeners, if you've got questions, comments, you we can take them in different ways.

You can call the program, it's toll free.

844295 talk.

It's 8442958255263 WXXI.

If you're in Rochester 2639994.

You can email the program connections at Cyborg.

If you're watching on our YouTube channel for sexy news, you can join the chat section there.

The one thing I would like all three of our guests to kind of talk a little bit about is some of the downstream effects if these cuts hold up.

And as the times story notes, there is some debate about even the legality.

you know, certainly in the last 4 or 5 months, there's been a lot of, debate and sometimes lawsuits about impoundment, about where funding gets directed, about what happens if it's already earmarked, what happens if it is already designated by Congress.

So understanding that some of this may change the times story did talk to researchers who are really dispirited, who are feeling like, you know, I don't know if I need to leave the field here.

I don't know if I should do something else.

And when the times talks to former leaders in cancer research who say, you know, we're going to lose our global position as a leader, we're going to lose people.

People will either leave the field, they will go to other countries, they will do other things.

I'm gonna ask all three of you, is that overblown, or do you think that could happen?

There is clearly a lot of unease across all segments of of the research community.

I think that's appropriate given all of these proposals that are coming out.

Personally, as a leader, I really fear for the trainees.

you know, they're the most vulnerable, when cuts are proposed.

Often those are the grants that end up getting cut first, because the established investigators have often refined ways of getting their funding.

And, you know, the trainees represent the most promising next generation of scientists that are going to make the critical discoveries that we all need moving forward.

And we could lose them.

I am very worried about that.

it's, you know, many of the PhD programs across the country have either decreased in size or put a hiring freeze on.

And for those people who are finishing their training, the number of opportunities is narrowed because many institutions are concerned about what the implications of these budget cuts are.

So I think as an institution and nationally as a field, we're really paying close attention to that and doing everything we can to protect our trainees.

I think what the audience has to understand is that, although we get funding for biomedical research and specifically cancer research from a variety of sources, the federal funding is incredibly critical to the success of this enterprise.

one could argue whether the current model is the best model.

If you are creating something from scratch, but you can't unplug that model overnight and expect that somebody else will step in and cover things.

as far as funding.

So, it would be incredibly detrimental.

One of the hats that I wear nationally is I chair, a lymphoma National Lymphoma Research Group that's funded by the NCI to do pivotal clinical trials.

our biggest accomplishment over the last year has been the publication of a clinical trial in the New England Journal of Medicine last October that demonstrated that a new treatment for Hodgkin lymphoma had less toxicity, worked better and cost less, and it's become the new standard of care.

This is a trial that only the NCI had the resources to cover.

and it's a small disease that industry wouldn't be interested in funding because it's an uncommon scenario.

So I fear that if there are these cuts that go through in this entire treasured infrastructure of the clinical research arm of the National Cancer Institute, were to go away or be threatened at a time when there's so much promise we would lose out on studies like that.

Doctor came in.

Are you worried about losing people in this field?

Absolutely.

And I echo what Jonathan said.

I think the junior people are the most at risk here, and especially junior faculty and scientists are focused on topics that have come under fire from the current administration.

One of our junior faculty in our division wrote an article for QED, talking about the impact on junior investigators and highlighting everything Jonathan just said fears about funding, continuation, promotion, tenure.

There's a lot of uncertainty and anxiety, and that makes it hard to launch a new career.

And I do worry about disparity science generally, too.

I think it's important that we are aware about issues related to cancer disparities and the chilling effect of these cuts could really curtail that entire field of research.

Emily, are you worried about losing people in the field?

Yeah, and I think one thing from a community standpoint, getting a little closer to me.

Sorry.

Yeah.

It's okay.

yeah.

So from a community standpoint, we, the Office of Community Outreach and Engagement, we have formed a Community Cancer Action Council, which is acts as our community advisory board for, well, Mott.

it is a group of around 29 active individuals and community members from various community organizations, government organizations, faith based organizations, or just cancer survivors and patients.

So, you know, as our advisory council, we look to them for what are the needs in the community.

so something that comes up often a theme is wanting to continue to enhance opportunities even at lower levels.

Looking at middle school and high school for at young adults to be able to learn about opportunities to with, careers and education and cancer research.

So that's something they realize is important.

and making sure that individuals are aware of the opportunities that exist.

So I think that being able to still market cancer research jobs is important.

and with these cuts, it kind of potentially could lower the invisibility of the that as an option for careers.

And I think people are looking at this wondering, well, does that mean that cancer research will continue apace.

It just may not happen in the United States?

Or does that mean cancer research might be threatened in general?

I mean, do you have a sense for that?

Yeah, that, you know, hey, we're going to lose our global position.

and that's that's a problem in and of itself.

But also, you know, there's a lot of great work that might just not get done that.

Is that what you think, Emily?

yeah, I, I do think that, but, I, you know, I think we have made the commitment and Doctor Friedberg as well as the institution that we will continue to listen to what the community is asking and find alternative ways to be able to create programing.

that will meet those needs.

but obviously, as mentioned, it's really critical to have that federal funding to support a lot of those activities.

Let me work in a little bit of feedback.

before we kind of broaden the scope to what's going on on the the scene of cancer research and treatment.

Alex writes to say at the risk of turning cancer research into a solely economic issue, how much value is lost due to cancer, we lose nearly a million years of human life.

Calculated by via years of life lost versus average life expectancy to just lung cancer.

The average American earns $40,000 a year.

Is that not $40 billion lost?

To say absolutely nothing of the people in that scenario?

I don't think I will of ever understand austerity budgets.

Cutting cancer research in the name of cutting federal waste.

Is the definition of pennywise pound foolish?

That is from Alex.

What do you make of that, Doctor Friedberg?

Well, I think that's a very valid point that, you know, if you can cure people who are young and have them be productive Americans.

that's an incredible investment.

Beyond that, if you're going to bring up the economics for every grant that we get from the federal government at the University of Rochester, most of the money is spent on people.

So it's an economic development tool.

Those are people that we recruit and hire.

They go to school, they buy things in stores, they go to the market and they participate in the community.

And there have been economic studies to suggest that for every dollar that we get in federal grants support, there's about a 4 or 5 fold return on investment as far as boosting the local economy.

So beyond what was brought up by the listener, there's also other there are also other economic arguments in favor of this type of funding.

Okay.

Go ahead.

I do want to echo what Alex said, though.

I mean, in our region, the number one cause of years of life lost is cancer.

So when you're thinking about how we can continue the health of our community, it really is addressing cancer through prevention, screening and of course, high quality treatment.

Charlie writes to say this is unconscionable.

Evan, you and your guests are being very diplomatic about the cuts to cancer research.

But I don't have to be.

I've already lost a brother and a sister to cancer who were in their 40s.

I don't know, a single family that hasn't been touched by this insidious disease.

The thought of cutting just one penny from cancer research makes me sick to my stomach.

Charlie, I'm going to edit just a little bit here for air, and he's just going to finish by saying I am disgusted.

That is from Charlie.

So, so before we kind of turn to have all of our guests talk to you about really kind of returning to what it means to get this NCI designation, and it's, was finalized in March.

I mean, in this climate.

So all this stuff is going on, the NCI designation happens.

There's still a lot of important work being done that we're going to talk about.

But let me close this segment of the show by asking like what do you want people to do?

It's a strange question.

I think Doctor Friedberg for you, because this is just my read on this.

You know, nobody in your field probably wants to be political.

This and this need not be political.

The way you mentioned that this has been a bipartisan issue supported by and bipartisan fashion for decades, is the way we talk about Mister Rogers, Sesame Street, PBS kids and public media funding.

It has been bipartisan for decades.

At the moment, it's not.

And I don't think that that's permanent.

I think that there is an education required to get people in power to understand value, and that's on it.

For those of us in public media, that's on us, and we're working on that.

but it has always been bipartisan.

And so maybe you'll feel more comfortable in a return to that kind of a feeling.

But what do you want people to do?

Well, I think you you bring up some points that, and maybe there are some parallels with public, you know, broadcasting that we've taken for granted to some degree, this bipartisan support.

And I do believe as a scientific community and as a cancer community, we haven't always done a great job of communicating to our community and and the public at large how valuable this support has been and the degree to which we've had accomplishments.

I am an optimist by nature, working in the field of oncology.

When I take care of my patients, I think part of my job is to be a cheerleader and an optimist.

that's what, I, you know, I'm hired to do.

And I'm taking care of somebody to bring them through their cancer journey.

So I share your optimism at some level that, as people start to really understand what's said throughout here, there will be a rallying cry and I think we can look at history and say that, you know, some of the budgets that were proposed in the first Trump administration similarly cut NCI funding.

And not only did Congress prevent that, but they gave increases every year to the NCI during those years.

We're in a different political climate now.

That said, I was on Capitol Hill two weeks ago with other cancer center directors meeting with a variety of representatives, including the staffs of our local representatives like Representative Langworthy and Representative Tenney.

And they all vocalized very clear support for the mission of the National Cancer Institute.

And I think it's important for the audience to emphasize that this is an area of funding that should not be touched or cut.

Doctor came in.

What would you say?

I mean, I guess from one Charlie to another, I definitely empathize with Charlie, the listener.

I'm also disgusted.

I've been in a low grade state of nausea for several months about what the future is going to look like for cancer research.

I guess I'll go back to your early example about the glioblastoma study.

These cuts are affecting not specific studies like mine, but they're affecting entire programs.

And I think that one of the best things we can do as people living in this climate is to have stories of impact that we can take to legislators, to help them understand how these cuts may be affecting specific people, specific communities, specific issues.

And I hope that will continue to change hearts and minds so that we can have a future that looks as optimistic as I would like for it to look.

Emily, anything you want to add there?

Yeah, I guess just for in terms of it's very encouraging that we continuously hear that, you know, how can I get involved?

How can I help?

What can I do?

and, you know, one very easy option is if anyone's interested in becoming more involved or engaged in what's happening at, well, not knowing what research is going on.

We do have that opportunity available through our office.

the key outreach and engagement office at Walmart.

So we have our cycle.

We meet monthly in an open forum.

Anyone is welcome to come.

It's virtual on the third Wednesday of every month.

so that is one opportunity from a communication standpoint to just become, a little bit more intimately involved in understanding the activities that are happening.

Any new developments?

so I encourage people to check out our website if you're interested or reach out to, anyone on the team, please, to contact us.

Like I said, storytelling is so important.

So if you have narratives you want to share with our office, do reach out to Emily and myself.

we're going to come back after this brief break, and we're going to talk about, what we know about the state of, cancer, cancer research, treatment, etc.. You know, I'm curious to know, with the rise in diagnosis of some types of cancer, is that because we're better screening?

Is that because we're seeing more of the cancer?

Is that because certain things have changed that are causing us to be more susceptible to different types of cancer?

and, you know, with this NCI designation, that's a big deal for Wilma.

And it has happened at a time of a lot of uncertainty.

But it, you know, it goes through at a time when the National Cancer Institute is getting a massive cut in funding.

So, there's challenges, but there's also opportunities, I think, to understand what's going on with cancer in our community, what the research is and what the treatment options are, as best we can.

What doctor Jonathan Friedberg, who's director of the Wilmot Cancer Institute, Doc Charles, came in as associate director for community outreach and engagement at Wilmot and a professor in the departments of surgery and psychiatry at the University of Rochester Medical Center.

Emily Hayes is program manager for community outreach and engagement at Walmart Cancer Institute.

And we're coming right back with your feedback as well on connections.

Coming up in our second, our pride events are happening around the world this month, and there are obviously different kinds of pressures and politics that has caused some sponsors to pull out of festivals that they've supported in the past in different cities this year, events locally are focused on both celebrating LGBTQ plus culture.

Easy for me to say and addressing the current climate that is happening.

And we'll talk about it next hour.

Support for your public radio station comes from our members and from Bob Johnson, Auto Group.

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Cancer is terrible.

We can all agree on that, and I am grateful to have the opportunity to have this conversation with our guests this hour who have been talking about not only what's happening at the national level with cuts and funding to cancer research, but also what we understand about cancer and, you know, certain prevalence.

And and I want to start with Doctor Friedberg and just can you pin a little bit of a broader picture and then we might get a little bit more specific.

But in general, understanding cancer and treating it and seeing it in our region and diagnosing it, what do you see?

What's the story?

So, first of all, as I started to mention briefly earlier, we should pay attention to national trends.

And I think an important message for people to hear is that the outcomes of cancer have improved dramatically.

I see this every week in my clinic, you know, some of the dreaded diseases like, melanoma that, you know, in the past, in the metastatic setting, people would have a, a life expectancy of months.

Now, it's routine that people may live for several years with that disease on relatively well tolerated immunotherapy approaches and the promise of new treatments.

To only add to that is dramatic.

both Charlie and I, spent the weekend in Chicago at the American Society of Clinical Oncology, meeting 40,000 medical oncologist from around the world and several practice changing, abstracts containing data showing improved survivals were presented.

So I do want to frame the cancer, burden in an optimistic way that we are continuing to make incredible strides.

That said, we are seeing disturbing trends as well.

cancer in younger people, particularly colorectal cancer, has increased dramatically such that, there is even talk about recommendations for screening to start earlier.

And, you know, it used to be an incredibly rare event to see a young patient in the colorectal cancer clinics.

And now it's almost routine.

through increased detection, we are diagnosing more cancers earlier, but there's a lot of opportunity that is still on the table as far as people either not getting those appropriate screenings or not following through with recommendations.

One of the most humbling moments in the pursuit of NCI designation for me as a director and as a long time, Rochester resident, I've been here more than 23 years.

Was, Charlie's report, about the cancer burden in our catchment area.

And I'm going to let him talk to that.

But the result of that report was how high the incidence is in cancer compared to national trends.

And through that detailed analysis, it really has fueled me as a leader.

But I know it is fueled all of our faculty and staff to work harder because as as you'll hear from Charlie, we have a disproportionate burden of cancer in our backyard.

You want to add to that?

Yeah, sure.

So I'll ask you a question.

Do you know the state that has the highest cancer incidence in the country per per capita?

It's capita.

Yeah, it's per 100,000.

People have the express the rate.

But oh boy, I, I meant to get myself in trouble with whatever I say.

Is that us?

Is it?

It's not us.

No.

Kentucky has the highest burden of cancer in terms of incidence.

But if you took the 27 counties and upstate New York that well, that serves in terms of our patient population and made it its own state, we would have the second highest burden of cancer after only the state of Kentucky, which just shows how important cancer is for our region and how much of a burden it puts on our community.

I mean, the oversimplified question is why?

What's going on?

I think that's the most common question we get and talk about in the community.

There are lots of reasons.

It's hard to boil it down to one.

And just to go back to our earlier segment, this is why we have to have more cancer research funding so we can answer these questions about why is the cancer burden so high?

I think a couple of things.

It's important to know that our region is older than the rest of the state.

In the country, we have a higher percentage of people over age 65.

And there was a report showing that upstate New York is actually aging faster than the rest of the state in the country as younger people move away.

Cancer is a disease of aging.

And so you're going to see higher rates of cancer in older population.

So that's one two, our rates of smoking are astronomically high in this region compared to the state in the country.

And as a risk factor for cancer, that's certainly one potential cause.

And then you think about social determinants of health and the factors that affect both rural and urban communities.

In Rochester and Syracuse, which are both in our catchment area.

Many, many risk factors can exist in.

What's an example of one of the risk factors, or one thing that we've been looking at recently is radon levels.

so we did a project, this is a complete aside.

I'm a couple's therapist by training, so it's always funny for me to be talking about things like radon exposure, which is not what I thought I'd be doing with my career, but yeah, we looked at, maps from house measurements of radon in our catchment area and found that the southern tier.

So the, the counties to the south of us had really high rates of radon compared to the rest of the state.

And right on the second most common cause of lung cancer after only smoking.

So again, you think about people living in neighborhoods where they're exposed to risk and how that can increase cancer.

So pretty good timing Emily House to get this NCI designation.

Yes, absolutely.

And so what is the possible impact on research?

I think a lot of people are wondering, you know, if research tends to focus on prevention, is it on cause is it on treatment and cure.

it's I imagine it's kind of the whole umbrella there.

Yeah.

I think, yeah, it falls under everything you just mentioned.

and as Doctor Friedberg mentioned earlier, you know, becoming NCI designated as a center, there's we're kind of part of this exclusive club where there's only other 72 centers, in the nation that are part of it, and it allows us to have opportunities to, interact even more closely with some of these other, national centers.

so that provides a lot an exchange of knowledge of research that's happening.

it does provide specific opportunities or has in the past for different supplements that allow us to look into specific research.

interests or projects.

so I think that there are a lot of benefits of NCI designation.

and the statistics show that, receiving this designation really does put you in another category as a cancer center.

Let me let me grab a little bit more feedback.

One phone call, one email.

First a phone call from Jane in Rochester.

Hi, Jane.

Go ahead.

yes.

I'm late.

Listen, today.

So I've missed a lot.

but I wonder if you've discussed who gains from this.

you know, the research going on.

I mean, we'll be slower and the death rate will go up.

That's what I'm getting at.

People are going to die and like Covid.

Who would benefit from that?

Why did they want this kind of thing?

There's got to be a reason to me.

And, it does scare people.

It disrupts families.

It is very traumatic.

I have cancer all over my family.

I'm the only one that hasn't gotten it.

Everybody else has had it.

And God and everything.

but, it does cause the grief and and there's, I don't want to say, what what limiting research would do.

So maybe you can help me.

Evan.

Oh, why would we.

Why would anybody want to do this?

And how can it be even legal?

Jane, first of all, please take care of yourself.

And I'm.

And I'm, you know, and my heart goes out to you and your family and I'm sorry you've had so much loss.

I know you know, you're not the only one in that category.

My cancer is awful.

and, you know, I'll let our guests weigh in.

But, Jane, your question.

Who gains for this or why is this happening?

Is similar to Dominique Rochester, who just sent an email responding to some of what Charles was saying.

regarding if you just take our region, take out the Eastern or New York City and, and create a state out of our region, we're way up there in cancer prevalence.

And those are, you know, forget blue states, red states.

We have blue cities and red counties and rural areas are red.

But part of what Dominique Rochester is saying is a lot of the areas of this country that are very, very rural and very politically red are very, very much in need of better services.

They have very high rates of cancer.

They're not going to benefit from this.

So, Jane, when you're wondering why is this happening?

The short answer that I would just give you is when you look at some of the New York Times reporting this week, those first wave of cuts that were based on language, that's the culture war.

I mean, there is some culture war going on.

There is a little bit of Duncan in scoring points and having a headline that, you know, we cut any funding and related to equity and we cut any funding related to, Lgbtq+ issues.

And so there's some culture war there.

But I mean, it's bigger than that.

That's not it's not a narrow set of cuts.

It's big, big cuts.

And I don't know the answer.

I mean, President Trump has been touched by cancer.

Everybody has.

So, so I don't really know.

But I will let you know, doctor Friedberg, when when Jane is saying, you know why.

Like, of all the things cancer research like why do you have a sense for why?

Well, what I've heard obviously is only you know what I can read and hear on press conferences that there's this perception that there's a tremendous amount of waste and there's opportunity to increase efficiency.

what I can tell you is that a 40% cut goes way beyond any repair of waste and efficiency.

And if anything, we should be increasing funding to NCI given the rate of improvements and the benefit, the return on this investment over the last 30 years, I agree with with Jane, the other problem with this is it's very difficult to measure what's lost because, you know, if we cut off all cancer research now, all I would have is the current tools in clinic, and you might not see the death rate go up.

But what we're anticipating that if you continue cancer research, the death rate will go down.

So what we really need is that continued sustained investment over long periods of time, so that these long projects can result in the dramatic improvements that we've seen to date.

You know, Charles, what would you say to Dominique Rochester, who is saying, you know, just think about the impact.

if you want if you wanted to even shade the country politically, the, the so-called red states would be they're going to be hurt by this, right?

Oh, absolutely.

I think every catchment area and every cancer center has red and blue counties, cities, zip codes.

So we have to think about the big picture impact of the cuts in terms of reducing cancer research as a whole, and the the smaller picture of specific communities that would otherwise benefit from studies that are not going to be funded because they fell into some language trap and were then canceled.

Evan, I might just add to that, that in our region, I think one of the big challenges that we've unearthed is access challenges to care in rural communities.

you know, our catchment area is broad.

It goes east to Utica and down to the Pennsylvania border.

for a patient who lives 40 or 50 miles from a linear accelerator, who has, an environment of poverty, may have trouble affording the gas, much less a working vehicle, to get them back and forth to daily radiation treatments that can sometimes take 4 to 6 weeks.

Those types of challenges result in poor outcomes, and we are deeply invested in overcoming, those disparities.

And in fact, I think part of the reason why our, numbers look somewhat similar to Kentucky's is that for a lot of our catchment area, the demographics are quite similar.

14 of these counties are considered part of Appalachia, with the known poverty and access challenges that are there.

So you are absolutely correct.

I visited, a couple of cancer centers, recently I was invited to speak at the University of Alabama, Birmingham.

obviously that's considered a red state.

and that cancer center is doing incredible work and is incredibly dependent upon federal support for their NCI designation.

So when it comes to the current and future state of cancer research, and can you tell us a little about the key program?

Yeah, sure.

Absolutely.

And I guess one other thing I was just going to comment on, I think that, you know, for some people, research is very long term.

so for those that are looking more of that instant gratification or not looking at it, at the larger scope of all the progress that has been made over the past 30 years, and it's really accelerated even in the last ten years.

So it's really important that we're communicating that in an effective message.

but yeah, so the SEO program.

Yeah.

So happy to talk about it.

so the co office we were founded, IRA, in 2020, officially as the program and our office was mandated by NCI, to help to engage the community in the research and the activities that are happening within Walmart so we can ensure that we are doing work that is responsive to what the community needs.

so we have four aims of the office.

I won't go too deeply into all of them.

we monitor the, catchment area, cancer burden.

we mobilize the community through various venues, including our SeaTac Community Cancer Action Council.

We engage the community and the research we do, and we also do that through various mechanisms, including, some community pilot grant funding specific for researchers.

we also have research specific advisory boards that work with researchers on specific projects to provide input and guide their research.

and then lastly, we disseminate cancer prevention and control services, programs and education within the community, which is mainly done through our outreach, portion of our office.

So a lot going on here.

And I don't want anybody leave the our with the idea that, well cancer research is going to collapse locally or regionally, that it's not going to collapse.

But there are certainly cuts that are having impacts.

There's concerns about more.

And, you know, cancer is going to touch everybody's lives.

I got an email from, Teddy wants to know, if the panel thinks that President Biden's cancer diagnosis will make people take prostate cancer more seriously, what do you think about that, Doctor Friedman?

We see a lot of times where a celebrity gets a diagnosis of cancer, and there's interest in that particular cancer or disease.

And I think that this probably will have a little bit of an effect.

to the degree it may help men think about getting that PSA checked and having the discussion with their primary care doctor about the appropriateness of screening.

And, for those patients who may have an elevated PSA, having it worked up for early detection, that would be a great outcome.

but I think that, more broadly speaking, you know, it's up to us and, and efforts like our community outreach and engagement office to ensure that we're providing all the information and to our broad catchment area to make sure that all those preventable cancers are indeed prevented.

By the way, is there research that indicates that men really are worse at getting checked?

I have to believe it's true.

Yeah.

It depends if if if there's maybe a woman at their side to, push them, they're more likely to be checked.

What is wrong with this?

As a 46 year old who has not had a colonoscopy and I hear about it, I have a friend who's a colorectal surgeon and he lets me know what he thinks of those to say, I know, I know, and, this is kind of where I want to wrap this program.

And like, despite everything going on, there are opportunities for people like me if I move a little bit and, a little more proactive to take care of ourselves, better to take care of people you love.

Better to get screened to understand what the research tells you.

And yes, sometimes that means getting screened earlier or younger and, you know, grumbling about it.

but where are we optimistically, as the optimist at the table?

Talk to frameworks.

Where is cancer care going here?

If the funding allows research to happen.

And I'm not talking pie in the sky, everything is perfectly cured.

But within our lifetimes, what do you think is realistic?

So I think, broadly speaking, nationally or internationally, what we're seeing more and more is the ability to turn many cancers into a chronic disease.

I think that for a long time we were talking about the cure.

We want the magic bullet that's going to take cancer away forever.

And we do cure some patients with cancer, and there may be opportunity in the future to cure more patients.

But what we're doing more successfully for many cancers now is to turn it into a chronic disease like hypertension, like diabetes that can be managed.

And the tools that we have to manage the this now chronic disease are often reasonably well tolerated agents that people can tolerate for long periods of time.

So for example, the disease multiple myeloma, it's a type of blood cancer.

What I trained the median overall survival for a patient with a new diagnosis of multiple myeloma might have been 18 months routinely.

Now, patients are living well over ten years, and many patients, live longer.

And given the older age at diagnosis, no longer will people die of multiple myeloma.

They'll die with multiple myeloma.

Based on all these new treatments and essentially we're taking that disease and making it a chronic disease.

That's just an example of this paradigm.

And I think that's the direction that you're going to see more and more in about 40s.

Charles, if you want to add your thoughts there too.

Yeah.

Just really quickly, an anecdote.

We have a health assessment survey we do in the community for outreach events where we ask community members about their cancer health, their screening behaviors.

The vast majority of respondents are women.

We need people of all genders to think about their cancer health and engage with us so we can help you to get access to cancer services.

And then the second quick thing I would say is, you know, make your voices heard, right.

If you have thoughts about cancer research, the cancer burden in our region, come talk to us.

We are here.

We want to hear your feedback so we can convey it to the leaders at Not.

Will you all come back and update us on what change is happening no matter the direction?

I mean, this is so important to this community, and I hope you'll come back in the near future and keep us apprized.

And I want to thank you for making the time for this program.

You just heard Doctor Charles came, an associate director for community outreach and engagement at Walmart Cancer Institute, and a professor in the Department of Surgery and Psychiatry at the University of Rochester Medical Center.

Thank you for being here.

Thank you so much.

Thank you.

Emily Hayes, program manager for community outreach and engagement at Wilmot Cancer Institute.

Thank you for being here.

And thank you, Doctor Jonathan Friedberg, director of the Wilmot Cancer Institute.

We appreciate your time, appreciate your support and the support of the entire Rochester community that led to our designation.

All right.

That's an NCI designation.

National Cancer Institute.

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