The Research METAvivor Funds

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org Senior Editor, Jamie DePolo.

Jamie DePolo: Hello, thanks for listening. My guest is Dr. Kelly Shanahan, an OB/GYN who’s been living with metastatic breast cancer for 11 years. She was recently elected president of METAvivor, the first organization dedicated to raising awareness of, and funding research on, stage IV breast cancer. She’s going to talk to us about some of the research METAvivor funds and explain why this type of funding is so important in today’s political climate.

Kelly, welcome to the podcast.

Dr. Kelly Shanahan: Thank you, Jamie. It is always a pleasure talking to you, whether we’re in person or via the ether like now.

Jamie DePolo: Exactly. It’s so great to see you again, talk to you again, and congratulations on being elected president of METAvivor. That’s really great for the organization and for you, I’m assuming. And I briefly described the organization, but could you give us a few more specifics, because METAvivor does a lot of great things.

Dr. Kelly Shanahan: Absolutely. Absolutely. So, METAvivor was founded in 2009 by four women in the Annapolis, Maryland area, who got kicked out of an all-stages breast cancer support group because this whole metastatic breast cancer, life-shortening, incurable, was just too much of a bummer. 

So, they started their own support group and after a while they were like, you know what? We want to, we want to fund research, we want to raise money and fund research. And they did bake sales and things like that. And they reached out to multiple institutions across the country saying, hey, we raised, you know, $50,000 and we’d like to use that money to fund research specifically designed to help people who already have metastases, who already have metastatic breast cancer. And they were told, yeah, no, we can’t do that.

So, they said, well, you know what? We’re going to do it ourselves. So, in 2010 they awarded their very first grant for $50,000 to Dr. Danny Welch, who is currently on our Scientific Advisory Board. And from there the organization has grown and grown and grown, to the point where we are now…you know, I consider us some of the big boys, the big girls, the big people, because we’re funding, we’re funding meaningful grants. From that first $50,000 grant, we now consistently fund two categories of grants, an early career investigator for people that are, you know, within 10 years of getting their doctorate, whether it’s a PhD, an MD, DO, DVM, doctor of veterinary medicine, so, within 10 years of that, six years their first faculty appointment. That’s $200,000 given over two years.

We also fund a translational research grant, which is now $450,000 given over three years. You know, and that’s, you know, that’s getting to be on par with much bigger organizations. This year as well, for 2025, we are doing an exploratory grant in the quality-of-life realm. We have never funded anything in quality of life, and this particular grant will be $200,000 given over two years.

And it’s not like, oh, people with bone mets have the most pain. No it’s, people with bone mets have a lot of pain and here is something concrete that we’re researching that could potentially help them. Whether it’s for treatment or it’s learning about a mechanism that could be further studied and applied later, but it has to be something really concrete.

And we’re really excited about all of this. So, you know, we went from 50 grand in 2010 to just shy of $4 million last year that we funded in research. We did 12 grants totaling just under $4 million.

Jamie DePolo: That’s incredible. So, tell me a little bit about the process. I’m assuming people have to apply, and then you have a review board, or how does that work?

Dr. Kelly Shanahan: So, we have a very, very rigorous process, as does any reputable grant-funding organization, whether it’s the federal government or an institution or other non-profits. So, we have a…the first phase is sending out a request for proposals, and we just literally on Thursday, was the last deadline for our letters of intent. 

So, we get the letters of intent, they’re reviewed to make sure they meet the criteria, and those that do are then reviewed. They are reviewed by scientists, they are reviewed by scientists in the field, they are also reviewed by at least one patient advocate. So, one person living with metastatic breast cancer or someone, or a loved one of someone living with metastatic breast cancer, reviews every single solitary letter of intent.

Those that are deemed super interesting are invited to submit a full application, which just like the applications for, you know, great big organizations or federal grants, it’s a process. There’s a public, a lay abstract, there’s a scientific abstract, there’s background information, there’s descriptions of how they’re going to do the research, there’s a budget that they have to submit, and all of that is also reviewed by scientists, ideally two, as well as at least one patient advocate.

So, it’s incredibly rigorous and you know, obviously there’s attrition. You know, we get, you know, however many LOIs, letters of intent we get, it’s a much smaller number that go to the full application process. 

Once all the full applications are scored by the scientific reviewers and then by the patient advocate reviewers, that’s all put into a spreadsheet, they’re scored. So, the patient advocates are only asked to look at impact. If this works, is this going to be impactful to people living with metastatic breast cancer? The scientists look at a lot of things. They look at impact, they look at feasibility, they look at, is the budget justified? They look at the institutional support, etcetera, etcetera. 

We also require that every full application has an advocate as a research advocate, and ideally more than tokenism. I review grants, I’m an advocate on grants for lots of scientists, and if I am reviewing the grant and I see that there’s some letter of support and there’s maybe two of them and they’re identical, and it appears to be tokenism, I ding the researcher for that. We want meaningful involvement. And because I think that having people that are impacted by disease being involved in the research can help develop better questions, better research. So, we also do require, as do a lot of other organizations, having an advocate involved in each full application.

And then once the full applications are in, they’re all reviewed, they’re all scored, it goes to our Scientific Advisory Board. There are currently three career metastasis researchers on our Scientific Advisory Board, plus we just added a clinician because we have these quality-of-life grants that are coming in this year, plus a lot of our translational grants are more clinical. So, now we have four super bright, expert people, and me on the Scientific Advisory Board. 

Jamie DePolo: Well, you’re super bright, too. I’m curious, when you talked about, does their research, or will the research have an impact and effect on people with metastatic disease, are you looking for something, I guess kind of immediate like, two-to-five-year effect? Because I guess that would kind of cut out some early research. Like, somebody who’s developing a new drug. I mean, ultimately that would have an effect but it’s not going to be so soon.

Dr. Kelly Shanahan: For our translational grants, we would like to see it be able to get into humans in that two- to five-year timeframe. But we do fund a lot…most of the research we fund is bench science. So, that is a little farther out, but it has to have a lot of promise. So, a lot of times we’re funding research, it’s almost like seed money. We’re funding high-risk, high-reward projects that allow the researcher to gather that data, that’s then going to allow them to apply to those big NIH grants, or at least used to be able to let them apply to the big NIH grants. You know, so that they’re able to continue that research and that, you know, maybe this, you know, basic science petri dish or mouse model work, you know, maybe in two to five years might lead to translational work, which then in another two to five years could be something that’s in a clinical trial.

Jamie DePolo: Okay. So, what’s the ratio? I mean, how many applications do you get? And it sounded like you funded 12 this year?

Dr. Kelly Shanahan: We funded 12 total grants for the 2024 grant cycle, that frankly off the top of my head I don’t remember the breakdown between translational…oh, we funded more translational than we did early career, and those are the only two mechanisms we had last year were…actually, I take that back. We had translational, we had early career, and we did this, we called them exploratory grants. It was a small amount, it was $50,000 given just one year for like, I have this idea, I’m not sure it’s going to work, but it sounds really cool, and I think this could be big. Just again, to let that, let that  investigator do something that potentially could lead to the next great thing, and there was one grant that we funded for that. 

This year again, we just, our LOI process just closed a couple days ago. We got 114 letters of intent for translational, 50 for early career, and 13 for this quality of life. 177. That is almost double what we normally get.

Jamie DePolo: Oh, wow. 

Dr. Kelly Shanahan: I’m kind of like, I don’t even know how we’re going to review all this stuff, but we will.

Jamie DePolo: Right. 

Dr. Kelly Shanahan: And you know, you know, we just need to raise more money. You know, we can only fund as much money as we raise.

Jamie DePolo: Right.

Dr. Kelly Shanahan: You know, we’re an all-volunteer board, the majority of people on the board are living with metastatic breast cancer. We have board members who have had loved ones die from metastatic breast cancer. But you know, it’s almost like standing on a street corner with a bucket trying to raise money. We have supporters who do fund raisers, who do, you know, anything from, you know, fun runs to great big galas to, you know, to local coffee shops donating proceeds in a particular month or selling a particular baked item and getting the proceeds.

Jamie DePolo: And that’s the modern bake sale.

Dr. Kelly Shanahan: It’s the modern, it’s the modern bake sale. And you know, that’s how we fund these grants and you know, the more money we raise, the more research we can fund, and this year I think, you know, again, we’ve almost doubled the number of applicants, again, letters of intent that we have, and I think it’s because of a lot of fear about what’s happening in the world right now here in the U.S., and the uncertainty about the funding of research on the federal level. That, you know, that private foundations, that non-profits are becoming more and more important, and we want to fund as much good research as we can. 

So, you know, I will beg people, please, please donate to METAvivor.

Jamie DePolo: Right. Now, are you hearing anything from the cancer researchers? I’m curious, you brought up the NIH and you know, sort of this state of funding. There’s been a freeze on NIH funds, there’s been a freeze, or a pause on publishing in the Federal Register, public comments so, you know, the research meetings can’t go forward that way. Are you hearing anything from the researchers? I mean, I know a lot of them, I’ve done a couple interviews. They’re nervous, they’re scared, they don’t know what’s going to happen, they can’t hire their PhD students or their post-docs.

I just feel like it’s, like cancer research is coming to…Federally funded cancer research is coming to a big halt and as you said, it’s making private groups like METAvivor that much more important. But you’re not as big like, you can’t whip out a $5 million-dollar grant for eight different people. 

Dr. Kelly Shanahan: Right. Yeah. I mean, it’s crazy, and we, you know, we have heard things. Oh, there’s a lot of trepidation. You know, you have entire programs that are not admitting any PhD students…

Jamie DePolo: Right.

Dr. Kelly Shanahan: …regardless of the field. So, you know, in terms of cancer research, if you don’t admit PhD students now, then we are going to have a brain drain five years down the road. 

You know, the U.S. has always been the leader in innovation in science and technology, and we are, I don’t know, throwing out the baby with the bath water. You know, it’s crazy because it’s going to impact people. You know, I have not personally been impacted by the cuts in terms of I am not in a clinical trial that’s being paused, but there are people with metastatic breast cancer who were in clinical trials, that those clinical trials have been halted because of these federal directives. 

There are researchers, I just read today about a pediatric oncology researcher who is shutting down her lab because of the uncertainty about whether they’re going to get funding. Still going to keep doing pediatric oncology, but they’re not doing any research right now because of the uncertainty. And again, I think, I think the fear is reflected in the fact that we got 177 letters of intent for this year’s grant cycle.

Jamie DePolo: Right. Now, is there a, or are there similar organizations to METAvivor, say in different countries, or is METAvivor the one, and then say, people in France or people in the U.K. talk to you. Do you have partner organizations like that? 

Dr. Kelly Shanahan: We don’t have any partner organizations outside of the U.S. We only fund U.S.-based research. 

Jamie DePolo: Okay.

Dr. Kelly Shanahan: And there’s a lot of reasons for that. I mean, a lot of them having to do with just governmental regulations, and just logistics. So, we only fund researchers that are based in the U.S. We only fund research that is carried out at academic institutions, non-profits, or governmental entities. We do not fund any industry research. You know, we’ve had people that submit an LOI but they have their own little like, biotech company, and it’s like, you’re a for-profit. Sorry. 

So, we only, you know, we only fund…you know, we fund mainly academic research, you know, and yeah. I’m sure there are, I think we’re fairly unique in that we only fund research that could potentially benefit people who are already living with metastatic breast cancer. 

We do not fund prevention of metastases research. We do not fund research that would take that, you know, help that person who had early stage disease, you know, five, 10 years ago, from ever having metastasis. Although as with everything else…I always say that research is the only area in which trickle-down theory works. Because if you find something that might help somebody who already has metastases from developing more metastases or getting those metastases to become dormant, that eventually is going to help an early-stage person never become metastatic. Virtually every drug that’s on the market for breast cancer started out being researched in the metastatic population and is now, a lot of them have moved into the early-stage population to decrease the risk of these people having a recurrence or becoming metastatic.

So, again, that’s the only place where trickle-down theory works is research. 

Jamie DePolo: Right. Well, I’ll get your take on this. So, I read a lot of media releases from various universities. And there was a university in Belgium that sent out a release, today I believe it was, either today or over the weekend, basically saying hey, you, U.S. researchers, PhD students, come to our university. We’ll give you a giant stipend to start and come and do your research over here. So, that, to me, speaks directly to the brain drain that you were talking about. And now other countries are actively courting some of our best researchers, and they were looking specifically for oncology researchers.

Dr. Kelly Shanahan: Well, you know, thank you Belgium and other countries for keeping science going. Because if the U.S. can’t do what we have done so well for so long, I am so glad somebody else is stepping up to the plate. Because we cannot, we cannot pause this. Cancer does not pause for anything or anybody. Cancer doesn’t care what your political beliefs are. Cancer does not care how much money you have. So, I think so much of this is so short-sighted. It is, it really is cutting off the nose to spite the face. I am at a loss for words to explain the stupidity behind a lot of these decisions.

Jamie DePolo: Yeah. Now, I have to ask you, if you’re comfortable discussing it. You’ve been living with metastatic disease for a number of years. I do know you told me once before that you had to stop practicing because of side effects. So, with all these potential cuts and talking about Medicaid and some of the Social Security stuff…I mean, I know you must have specific fears, but are there like, two things that you’re the most worried about?

Dr. Kelly Shanahan: Yeah. I mean, I think terrified is not too strong of a word to express what a lot of people living with advanced cancer feel in this country. Number one, let’s talk about Medicaid, you know, aid for the poor. Medicaid is the ultimate safety net. So many people with cancer rely on Medicaid. They cannot work, they don’t have savings or pension plan to fall back on. They get their insurance through Medicaid. Medicaid’s what’s keeping them alive. Ironically enough, more people in red states have Medicaid than people in blue states. So, as the great Kylie Kelce has said in Philadelphia, FAFO, man. 

Jamie DePolo: Right.

Dr. Kelly Shanahan: And that’s tragic that the most vulnerable — I mean, I think the definition of civilization is how well you treat your most vulnerable — that our most vulnerable people could potentially be losing their healthcare. And it’s not just cancer, it’s everything else. 

And then Social Security. You know, for a lot of us with metastatic disease, and this was, this was me. I was diagnosed with metastatic breast cancer in my 50s, the height of my career as an obstetrician gynecologist. I developed permanent neuropathy with numb fingers, can’t exactly catch babies, wield scalpels, or even feel stuff or somebody else’s breast lump or ovarian cyst when your fingers are numb. 

So, I have been on Social Security Disability for years. And you know, there are a lot of us in that boat with advanced cancers that are under Medicare age that are receiving Social Security Disability, and to say that I am terrified that I’m going to lose that, that I am going to…I’m still not old enough for Medicare. I’m really close, I’m really close. My next birthday will be my Medicare birthday. But I’m terrified of something happening before I hit that birthday and no longer having that healthcare coverage. 

And I think a lot of people who have cancer, whether it’s advanced cancer, early-stage cancer, or any chronic health problem in the U.S., should be terrified.

Jamie DePolo: Right, and it’s just, I feel…I don’t even know if I can express how I feel, but it’s like this is just one more giant worry for anybody living with metastatic disease. There are so many things that get put on the person who’s been diagnosed with cancer. You have to manage your treatments, your care, your side effects, your doctor appointments, and now you have this to worry about on top of everything else. It just…

Dr. Kelly Shanahan: It’s overwhelming. 

Jamie DePolo: Yeah.

Dr. Kelly Shanahan: Absolutely overwhelming. I mean, cancer is hard. You know, just navigating the healthcare system in the U.S. is hard enough, you know, and navigating it with cancer is even harder. I am supremely grateful that there’s been a reprieve on the coverage of telehealth.

Jamie DePolo: Right.

Dr. Kelly Shanahan: I mean, that is so important in the cancer space for people to be able to access their doctors without having to drive. I live 200 miles away from my super expert metastatic breast cancer expert oncologist. So, we got…I’m looking out my window here, it’s snowing. We have gotten another foot of snow on top of the two and a half feet we got a few days ago. So, if I was supposed to see my oncologist in the next couple days, I’m not, I can’t, I can’t even get out on my street right now. 

So, to be able to pivot to telehealth is really important for people that live in rural areas, for the elderly, for people who have mobility issues, and that’s a temporary reprieve until, you know, for I think another six months. So, you know, that’s another issue that worries those of us with cancer, is the ability to access our doctors via telehealth.

Jamie DePolo: Yeah. Yeah. Kelly, thank you.

I know that METAvivor besides funding the grants, you also do some policy work, some lobbying, am I right?

Dr. Kelly Shanahan: We don’t lobby.

Jamie DePolo: Oh, you don’t. 

Dr. Kelly Shanahan: Non-profits don’t lobby.

Jamie DePolo: Well, all right. I should…

Dr. Kelly Shanahan: We advocate on the Hill…

Jamie DePolo: Advocate. Yes. How about that? That’s a much better word. Sorry about that.

Dr. Kelly Shanahan: We have a very robust legislative advocacy program. We’ve recently revised our mission and vision statements. And we have three pillars in METAvivor, three main pillars. Research, advocacy, and support, and we have a very robust advocacy program. We do an in-person Hill day, usually in October. Where we actually go to D.C., we meet with our elected representatives. We meet with their 12-year-old legislative aides, actually they seem like they’re 12, they’re very knowledgeable, to educate them about metastatic breast cancer and about policies that we would like them to support to help, to help people with cancer live better, less stressful lives.

We also do a virtual legislative advocacy thing we call GroundSwell, where you can meet with your elected representatives in the home districts when they’re home on recess, or do virtual meetings via, you know, via Zoom or any one of these other platforms. So, we are very involved in that. We have just joined the Alliance for Breast Cancer Policy, I think I might be…

Jamie DePolo: Oh.

Dr. Kelly Shanahan: …fixing up. Yeah. So, it’s multiple organizations. I think Komen is the biggest organization behind it, and we recently joined that. We’re the only metastatic organization, breast cancer organization. there. Again, to help amplify the voices by working together. 

So, that is, advocacy is a big part of what we do.

Jamie DePolo: Kelly, thank you so much. I really appreciate this. I appreciate all your insights and for being so honest and open with us.

Dr. Kelly Shanahan: Thank you, Jamie. It’s always a pleasure, and I’ll see you at one of the meetings later on.

Jamie DePolo: I’m sure you will, I’m sure you will. Thank you. 

Dr. Kelly Shanahan: Thank you.

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