Marnie's Law with John Schulenberg

John's daughter was misdiagnosed, then eventually diagnosed with inflammatory breast cancer. He has since wrote a guest bill called Marnie's Law for Legislature in Massachusetts which is now before the 194th Congress. The law states that inflammatory breast cancer shall become a part of the education component for all undergraduate nursing programs in the Commonwealth of Massachusetts.

Transcript

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Terry Arnold: Hi, this is Terry Arnold. I'm especially honored to have with me today John Schulenberg and John and I met, unfortunately, because of his daughter in her

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Terry Arnold: situation with inflammatory breast cancer. But I tell you what, he has taken her story to New Heights is going to really matter in her memory to save others. So, John, let's get started. You've got a lot to talk about.

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johnsimac: Thanks, Terry.

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johnsimac: Thank you. I feel honored to be here.

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johnsimac: we're going to talk a little bit about my daughter Marnie

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johnsimac: Who

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johnsimac: was and still is, my best friend. I lost her to inflammatory breast cancer in May of 2022.

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johnsimac: Her story about inflammatory breast cancer is not atypical.

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johnsimac: In March of 2023 months after she gave birth, she had a breast infection that was diagnosed as mastitis

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johnsimac: over time. She received 3 regiments of antibiotics without any resolution.

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johnsimac: and sometime after the 3rd treatment it was suggested, she undergo a skin punch biopsy to rule out inflammatory breast cancer.

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johnsimac: The results came back as Stage 4 metastatic inflammatory breast cancer.

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johnsimac: During the time when Marnie was being treated for mastitis, she was seen by or receive consultations from

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johnsimac: her Pci. Primary care. Internist, 2 nurses, a perinatal nurse, and a lactation nurse.

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johnsimac: 2 different pas physician's assistants, a breast and a breast specialist. None of them were aware of inflammatory breast cancer.

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Terry Arnold: I'm gonna stop you right there for half a second, so you can catch your breath. Okay. Now.

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Terry Arnold: I know you've got this memorized. That's what 10 people

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Terry Arnold: who saw her that nobody knew

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Terry Arnold: when you're looking at how she she was seen by by what like 1012 people, and no one had ever heard of inflammatory right.

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johnsimac: No.

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Terry Arnold: Right, and and unfortunately, like you said, this isn't uncommon.

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Terry Arnold: She was misdiagnosed for mastitis.

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Terry Arnold: Months went by, so chances are she is probably even Stage 4

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Terry Arnold: at the beginning. But there may be even a possibility you should get them in Stage 3,

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Terry Arnold: which is something I know is very important to you for what you're trying to do next. But the reason I want to bring this up is she was actively seeking a diagnosis

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Terry Arnold: and was being

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Terry Arnold: not evaluated as good as she could have been, due to the lack of knowledge of the medical expertise.

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johnsimac: Correct.

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johnsimac: Yes, and so

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johnsimac: What has happened is, as you know, Terry, this happens far too often.

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Terry Arnold: Yes.

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johnsimac: I did some deep diving I've I've been following.

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johnsimac: When Marnie was 1st diagnosed she made she reached out to to the Ibc Network foundation

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johnsimac: and received as much hope as she had ever gotten from you and from the Ibc moms Facebook page that you put together. And it really helped her a lot.

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johnsimac: and she's we, she and I fought this battle together just quickly. We we were best friends. She trusted me.

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johnsimac: and we loved each other unconditionally, a very rare father-daughter relationship.

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johnsimac: But as she and we worked together I had access to all her medical charts, her medical records. I was her. Go to Guy.

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johnsimac: and I started to learn more about the Ibc Network foundation and the amazing work that you do.

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johnsimac: And you really helped Marnie tremendously.

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johnsimac: During the course of this I after Marnie died.

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johnsimac: We had a bunch of events marches, and we're we're doing some other stuff fundraisers. We were able to raise some money that

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johnsimac: her fund gave to the Ibc Network Foundation and to Dana-farber Cancer center

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johnsimac: but as I learned more about the Ibc network Foundation. I realized that how wonderful

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johnsimac: you guys are in education and support of diagnosed patients and and supporting research.

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johnsimac: But and that's a big button. It's nothing to you, because you know how much I love you.

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johnsimac: But frequently I saw the gatherings were preaching to the choir.

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johnsimac: which is people who have already been diagnosed people who are already a member of that horrible family.

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johnsimac: And I realized that there was a whole population out there

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johnsimac: that could really make a difference, and that is the frontline nurses.

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johnsimac: And as I've done more research in this, I realize what a huge gap there is in education. So

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johnsimac: I've gone forward and wrote wrote a bill. Guest wrote a bill called Marnie's Law, that that I was able to get sponsorship, for in the Legislature in Massachusetts. It's now before the 194th Congress.

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johnsimac: I have sponsors from both Houses which is unusual and both political parties because it is apolitical.

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johnsimac: and basically, the the law states that inflammatory

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johnsimac: breast cancer shall become a part of the educational component for all undergraduate nursing programs in the Commonwealth of Massachusetts.

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Terry Arnold: This is a perfect place to stop you to talk more about, because I don't want to get too far ahead, because obviously we went past her daughter's story kind of quickly, but I know it's been a big catalyst to what you're doing right now, and I met your daughter when she did find out finally, after those several months of what was wrong with her, and she and I bonded over the fact that we both had a similar misdiagnosis.

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Terry Arnold: I was 49 years old, and I had just had a baby, but I, too, was told that I had a mastitis infection. I thought that doesn't make sense. If you have mastitis, your labs would be abnormal. You would have a full body temperature. We both had the same thing going on just the red breast, the red, hot, swollen breast.

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Terry Arnold: And we talked about that quite a lot, and she rallied a lot of people. She used her platform as a rather well-known actress to educate.

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Terry Arnold: It was very important to her that people be educated, and I see where that apple didn't fall far from the tree with you how important it is to you, because, like I said, we can talk to the women, and we do talk to them a lot and try to guide them and their families through the proper care, because, just like these guys didn't know what she had.

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Terry Arnold: The other hand of is, they don't know what to do when they're treating them. There was a study that just came out. I know you're submitting that as part of your testimony is. It came out in February. I think Audrey Taos is the lead author on it out of New York, and

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Terry Arnold: she surveyed not quite 7,000 women that were known to have Ibc that were labeled Ibc stage 3, Ibc.

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Terry Arnold: And out of these 7,000 women only 25% of them were getting appropriate care.

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Terry Arnold: Now I know that's shocking, but that is the reality. And, by the way, if somebody says insurance or this had nothing to do with insurance, nothing with access to care. These were women. They were in care at known places that were not receiving the appropriate treatment. So we've got a lot to do so when you 1st reached out to me and said, I'm going for this law.

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Terry Arnold: I was like, Wow, because, 1st of all, people don't know that inflammatory breast cancer is not taught in Nursing School Medical school. It's not presented normally for the main stage

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Terry Arnold: of medical conferences. And so we tell people try to get to an expert. They get their pays a little bit. They're not, shall I say? Because they're like, Well, I don't want to have to travel and do these guys all go to the same medical conferences. Well, the problem is is not presented.

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Terry Arnold: So you now are really rattling a cage and getting something done.

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Terry Arnold: So I'd like to have people know more about the law that you're going for, because, honestly, I hope this starts a domino effect across the country to pick this up. Similarly.

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johnsimac: Well, I do have other states that are interested and thank you. I kind of rushed through it like I said, I'm preparing for my testimony, and I have to be short and brief. But after Marty was diagnosed

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johnsimac: she and her husband, Zach, decided to announce

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johnsimac: the diagnose and share their journey with some friends. So they start a Facebook page.

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johnsimac: partly as a Gofundme. But if it grew more than that, it became called Marnie's army, and

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johnsimac: it grew from about 60 or 70 people to almost a thousand. Now across the country.

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johnsimac: And what I learned from this is is

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johnsimac: The lives that she touched in a way that very few people can ever touch. It was quite amazing.

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johnsimac: And I'm getting I have a

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johnsimac: put up. We're we're getting letters of support for the law that I can present to the committee.

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johnsimac: and we're over 500 right now. And some of the testimony, the words, the comments in those letters are

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johnsimac: breathtaking. One person said, I'm getting testimonies from oncology. Nurses, physicians who say I never learned about this

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johnsimac: but one of the ones that touched me most was just a young lady who said, I never knew Marnie, but I knew a friend of hers. It was clear to me that she touched more people in her life than I, or anybody I know will ever know, and

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johnsimac: that that was pretty powerful to me, that and the and the statements from from physicians, people who are out there and say, this has to be done. So.

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Terry Arnold: The physician that that misdiagnosed me was so distraught that he misdiagnosed me.

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Terry Arnold: He actually left medicine. For a while he misdiagnosed me, and one other woman the same week, and in the 4 months that it took me to get a proper diagnosis. The other lady didn't keep going back, because, you know I kind of use the analogy. I'm older and I have more insurance, you know. I

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Terry Arnold: like a fried green tomato moment where she hits the car. I just kept going back going back. Well, she was a younger woman, didn't have as much ability, didn't have as much experience in medical community, and I hate the term be your own best advocate. I kind of dislike that a lot. We shouldn't have to be an advocate. I have been around the block enough to know how to ask a lot of questions. This woman was much younger and had less resources, and the 4 months it took me to get a proper diagnosis. She passed away.

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Terry Arnold: and my doctor was so distraught it would happen he left medicine for a year. I think he was also afraid I was going to sue him.

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Terry Arnold: but you know they don't know what they don't know, and you're trying to bridge that gap.

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Terry Arnold: and that's extremely important. So I'd like you to tell what you want this law to be, and I'd love to know what other States are looking. I'm hoping Texas is one of them, and if they're not, I'm going to rattle that cage because Texas is where I live. So tell us more about the law, please.

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johnsimac: Well, the laws. The wording is simple. It's an interesting history. Because

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johnsimac: when I 1st thought of this, and

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johnsimac: you know, I went on the government website and looked at how laws were written.

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johnsimac: and I how I initially wrote it. But it was called

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johnsimac: something different. It was called mother and child initiative.

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johnsimac: and my hope was that the Commonwealth would say.

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johnsimac: and the way I read some of the laws is, if it's passed, the legislature supports.

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johnsimac: The introduction of Ibc as an educational component.

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johnsimac: And to me that meant that if the Commonwealth said they support it, I have to still go out to all these hospitals and and universities, and say the Commonwealth likes this, and they think you should do it. So come on, let's get on board, and

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johnsimac: I have a unique perspective into the nursing, undergraduate nursing population in the Commonwealth, because my wife has been the chief advisor for all the undergraduate nursing students at our local college here. So we know what that population is like. We know what the instructors are like.

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johnsimac: So I'm when I 1st thought of it, I'm thinking. Okay, if I get the Commonwealth to say we support this. That means I still have to go out there and beat the pavement

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johnsimac: and the nursing instructors.

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johnsimac: you know. They don't want to change anything, and the students, God bless them! They're all working a job raising families. They got so much in their life.

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johnsimac: So

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johnsimac: then, I found out that I can write the law in such the the legislation in such a way that it is law.

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johnsimac: Whoa! Was that a game changer? So when House Council wrote that, and it came down, and it said, Now it's not the Commonwealth

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johnsimac: likes this and wants you to do it. Now the Commonwealth says you shall do this.

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johnsimac: That was a whole different.

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Terry Arnold: Check it.

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Terry Arnold: Now, that's a big deal. Let me tell you why. It's a big deal, because I know there'll be people watching this Youtube, video, we're going to share. We're going to share this on the Ibc podcast we're going to share it on spotify a lot of things. Inflammatory breast cancer has been around since the 18 hundreds, and it was referred to as fatal, virulent all these bad things. And along the way I said this in the testimony that I submitted. I hope that you can share it with the Commonwealth, where it picked up another label, and it was orphaned.

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Terry Arnold: An orphan is a disease that's very rare. That's very fast, doesn't have a medical encoding number which hopefully, we're going to get one. That's a whole long story. We do a whole podcast just on that.

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Terry Arnold: But when there's a big disconnect swift, no form of good quality, early detection, because, even if your daughter had a mammogram ultrasound. They would have probably read clean, you know, biopsy might have caught it. It doesn't. The things that we usually use for breast cancer don't work well for this.

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Terry Arnold: And so then, so there's a big disconnect for this disease when we know of breast cancer. So what happens is this disease doesn't get studied, it doesn't get funded.

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Terry Arnold: And then, unfortunately, the fatality rate of this disease is so high. This is where I think we need to

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Terry Arnold: quit thinking about the word rare, because the government has shown that more women die of inflammatory breast cancer than all the other breast cancers combined. So I think we need to quit thinking about the rarity and thinking about the actual death being a high number. And so for you to come along and say, not only should this be taught. This must be taught. It's a big game changer.

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Terry Arnold: because this disease, I don't think is rare, as they think. I think women pass away quickly, or the doctors don't know what it is, and don't know what to do.

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Terry Arnold: and that is a disconnect that this law could change. Now, to give something hopeful is that the San Antonio Breast Cancer Symposium? 2 years ago Ibc. Was presented from the main stage for the 1st time in its 45 year history, and that was something that we had lobbied for, and I was very honored to be on the panel.

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johnsimac: No vote.

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Terry Arnold: Are getting some traction. But what you're doing

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Terry Arnold: is incredible, because I'm hoping. Then it can say this is so invaluable, we know more. Let's do something about it, even if it's just a caveat of

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Terry Arnold: a 30 min one day course to familiarize somebody and what it looks like, because there is a look to the disease.

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Terry Arnold: to maybe triage that patient to where maybe, after a 10 day round of antibiotics.

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Terry Arnold: they go. Wait, let's talk. Let's don't wait because you have a slogan. That's very meaning for me to me. I know you. You know what I'm talking about. You're smiling. Do you want to share that slogan.

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johnsimac: Well, I have many of them, but one of them is no Ibc past stage 3 beyond stage.

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Terry Arnold: Exactly.

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Terry Arnold: No Ibc past stage 3, because we don't know what it looks like till it's Stage 3,

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Terry Arnold: and it's Stage 3. They will go for what they call curative intent. It doesn't mean that they won't go for curative intent at Stage 4. But there's more hope

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Terry Arnold: for curative intent. Stage 3. So your law, if it gets passed, pray God, Massachusetts, listening.

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Terry Arnold: because then it could start a domino effect of putting that into law.

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johnsimac: Yeah. So what? When do you think you're going to get to testify.

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Terry Arnold: Do you have a date yet?

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johnsimac: This has been another journey. Terry, originally the legislative director for my original sponsor, said I would probably be testifying in February.

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johnsimac: Hello! That was a couple of months ago. We're into April.

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Terry Arnold: Because today is april 8th that we're recording this and April 8th of 25.

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Terry Arnold: So you're on short standby right now, right.

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johnsimac: One doesn't know the government works in wonderful and frustrating ways.

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johnsimac: I just don't know. I mean, I know that once the the the committee clerk assigns Marnie's bill to the committee for test for somebody to testify. I get a window of about 5 days to submit all of my support materials. That's it.

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johnsimac: And they don't say, Oh, we're looking at. Maybe 2 weeks from now. You just don't know you've you've got to be ready, and so.

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Terry Arnold: Done some of this myself, too, and I know it's a hurry up to wait.

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Terry Arnold: and and then you're in this queue. And then all of a sudden. It's like, Hey, tomorrow can you come tomorrow? And you're like.

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johnsimac: Yeah, well, it's pretty close to that. But there are some things I can do. I'm a devious little guy when it comes to battling this horrible cancer, and there's some things I can do to, I think, improve my odds and get to know a few people a little better. But I want to go back to one thing you mentioned about

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johnsimac: rare cancer. I know

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johnsimac: nowhere near as much as you do, but I

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johnsimac: sometimes look at Ibc as not a rare cancer, but more of a

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johnsimac: misdiagnosed and underreported cancer. And I think.

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Terry Arnold: That's the way I like to refer to it, because rare gives people a sense of security that it won't happen to them.

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johnsimac: Right.

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Terry Arnold: And they think, why should I care about this? This won't happen to me.

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Terry Arnold: you know. I've known so many women. I was told you couldn't possibly have this as rare. Well, I did.

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Terry Arnold: you know, and the thing is, I I don't like to use the word where I tend to say underreported myself.

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johnsimac: Yeah. And there's a case to be made for support for research

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johnsimac: on that very basis. I think at some point, if if more information can be forthcoming to show that this isn't that rare, and we need to know more about it, because the more we learn about Ibc, the more we're going to learn about a whole lot of other cancers, and that would be my hope. I'm

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johnsimac: I learned, you know, early on that. I'm a very poor fundraiser, although we did quite well. I don't do well asking people for money, and we're going to continue. We've got a big event very quickly coming up. We hope next year.

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johnsimac: where planet fitness will be partnering with planet fitness for Marnie, what we call Marnie's March.

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johnsimac: and in the month of May, which is her birth month. People will be getting on their treadmills

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johnsimac: all over the place to raise money

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johnsimac: for the Marnie's Army fund, which will then go to research and.

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Terry Arnold: Talk about that, and we will definitely share it with Ibc network to help generate. I'm always happy to share information about similar efforts, but I want to say one thing, though, you talk about the rareness.

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Terry Arnold: This is a rabbit hole. You and I could go down forever, because, 1st of all. We don't know where Ibc starts. We know it lands in the breast of Stage 3, but we don't know what stage one and 2 looks like. We don't even know if it starts in the breast, it could even start someplace, else. There's much we don't know, but also, too, when you say about research.

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Terry Arnold: What we found in the Ibc network is Ibc and triple negative things for Stage 3 and stage 4, because I feel like if we can learn how to stop a fast acting cancer in late stage. That information has got to somehow translate well over into something to stop things earlier. And to me I'm all for people wanting to study prevention and all that. But what do you do about the lady who has cancer? This is a young woman who has cancer who is desperately wanting to live

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Terry Arnold: and and raise her daughter. And I think we need to remember that late stage funding is very important, and we can save someone's life

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Terry Arnold: by putting some time and attention effort into that. So I love your slogan about No. Ivc after Stage 3. And one day, hopefully, we'll know what it looks like earlier. But until we have the research.

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johnsimac: Yup!

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Terry Arnold: And just to give people a caveat. Did you know that inflammatory breast cancer has received less than 150 grants

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Terry Arnold: in the last 25 years.

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johnsimac: Wow!

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Terry Arnold: Shocking, and that compares to 33,000 grants for generic breast cancer.

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johnsimac: There. There are 2 things, 2 quick things I'm I'm gonna mention. 1 1 is

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johnsimac: the the actuarial part of it. If like, you know, I'm a musician, but there's that part of my brain that has numbers. That's an actuarial part of it.

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johnsimac: And I found in my research

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johnsimac: The best I could do is that the cost of of treating somebody at Stage 3

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johnsimac: because I had my daughter's medical bills, the cost of keeping her alive for 2 years was around 2 million dollars. Those were billed costs by her health care providers.

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johnsimac: The cost of maintaining somebody at Stage 3 is around $186,000. Those are the best figures I could find.

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johnsimac: That's a difference of almost 2 million dollars per patient.

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johnsimac: So when I make my case to the joint committee. I'm segwaying here, which is a musical term. I'm segwaying into a part of. I've been watching other committees work.

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johnsimac: and I'm going to read this.

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johnsimac: This is what I'm going to say to the committee. A strong case for Marnie's law was recently made by expert testimony given at the March 13.th Hearing before the joint Committee on health Care. Financing.

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johnsimac: The subject was the rising cost of health care in the Commonwealth, and one of the areas of concern was cancer treatment. Slash chemotherapy in the Hop D environment. That's a hospital outpatient department environment.

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johnsimac: The passage and implementation of Marty's law will help to reduce these costs by millions, so that.

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Terry Arnold: Cool.

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johnsimac: That's how I get their attention. Because a lot of them

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johnsimac: they're just thinking numbers, you know. What's it going to cost the Commonwealth. And of course Marnie's army is going to pay for any cost of implementation but

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johnsimac: and then and then I have a dream

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johnsimac: like I'm not Martin Luther King. But the dream is that somewhere along the research line it will be discovered that

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johnsimac: Ibc is what is is a genesis cancer, and that it's it starts.

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johnsimac: and yes, it it can manifest in the breast.

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johnsimac: But it also can start the growth of cancer that becomes diagnosed as something other than Ibc

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johnsimac: and all of a sudden we're looking at what we call Ibc as the genesis for a whole lot of cancers.

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johnsimac: And if if somewhere some great researcher can make that case to Nih. Now we're talking about some serious

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johnsimac: funding for research, and that's that's a pipe dream. But I have that dream.

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Terry Arnold: Dreams, and I tell you what a lot of them have come true when I so hang in there. The reason I'm saying this is. When I 1st met Dr. Carlos Ortiega I got lost in a hallway at the San Antonio Breast cancer Symposium about 12 years ago, and I was completely overwhelmed. I'm this only person there that is not a doctor or something important, and and I'm there as an advocate by myself, and I'm completely overwhelmed, and I get lost in this maze of place.

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Terry Arnold: and he found me in a hallway and he goes. You're supposed to be down this hallway, and I go. Yeah, I know about how to get out of here. It's so big. And he started walking with me and helping me, and I had no idea I was talking to one of the 3 founders of this conference, and so I'm babbling on about Ibc, and I'm really rattled, and he's like.

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Terry Arnold: and he was so kind, and he goes, can I talk to you later? And I said, Yeah, he gave me his name and number, and I had no idea where he was, turns out, you know he this is who he is. And he said, You know, I tell you what.

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Terry Arnold: if you can get 3 Ibc experts to be willing to do a presentation. This is, gonna be hard to get through. I'll let you have some time on what they call the soft opening on a Tuesday

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Terry Arnold: afternoon, because the conference opens on Wednesday morning we got I got 3 who who said they would do it? He couldn't believe it. And then he thought, they maybe have 500 people in that room.

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Terry Arnold: There were 2,000 people in that room. He couldn't believe it. And he goes. Okay, until the signs change. I can't give any more space. But the traction kept growing, and then, 2 years ago, they had it presented on the main stage with Ibc experts.

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Terry Arnold: and I got to be on that hill and

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Terry Arnold: and it was there because something called people's choice. And what happened was the doctors get to vote on what they want to learn about. And we had been pushing and all that. So between all these combinations of all these people pushing and working together. It happened in a big way, and there was easily, you know, 3,000 people in that room out of 8,000 usually attend that conference. That's a very good turnout. So the interest is there. And so these pipe dreams are mattering.

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Terry Arnold: The traction is there and and we need to keep at it. And so

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Terry Arnold: what you're doing is going to matter.

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Terry Arnold: and I wish we could have had a happy ending for your daughter.

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Terry Arnold: But I think it's just so wonderful and selfless of you to put yourself out there, because I know it rips your heart open every time you think about it, but it's going to rip your heart open every day, anyway. So at least you're using that to make a difference. It's going to save somebody.

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johnsimac: Well, we had a like, I said.

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johnsimac: Marnie and I were the most amazing father-daughter relationship I've ever known or seen.

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johnsimac: But at 1 point during our the our journey.

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johnsimac: She qualified for a trial at Msk and

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johnsimac: We had a long back and forth about whether or not she should do the trial because she had to stop chemotherapy to do the trial.

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johnsimac: and

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johnsimac: she ended up doing the trial. It didn't work. He gave her Ibc a chance to really gather some momentum.

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johnsimac: But she said to me a couple of times when we were talking about, This

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johnsimac: is, I know I know this is going to be successful, Daddy, but if it's not.

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johnsimac: I want what they learn from me to make a difference for other people, and that's pretty much the basis for Marnie's law

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johnsimac: and all the work I'm doing on it. This is a a career

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johnsimac: that I never wanted, but I'm going to fulfill her wish, and we're going to get this law passed here and across the country.

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Terry Arnold: Thanks for showing interest.

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Terry Arnold: Pardon me, mind saying weather, station.

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johnsimac: Pennsylvania, Wisconsin, Ohio, and Tennessee. Right now.

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Terry Arnold: Great. Well, I know I want to talk to the people in Texas because

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Terry Arnold: a patient advocate pipe dream

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Terry Arnold: started something to open the 1st clinic in the world. Texas puts all their money in something called secret. And that's where all the money gets given out for cancer. Okay, we put all the money to this fund, and they give it out. And but what happened was, some people lobbied the State of Texas that they wanted an Ibc clinic opened, and it's a long story. But what ended up happening was the State of Texas decided to put the Ibc clinic at

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Terry Arnold: Md. Anderson. Morgan, Welch clinic named after Morgan Welch, a young woman who passed from Ibc. They gave 2 million dollars a year for the infrastructure. So then, an organization like mine can come along and donate or other organizations can donate to research. And there's an infrastructure there that happened in 2,006. I was diagnosed in 2,007. And it's a very momentous moment, because this is the only clinic

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Terry Arnold: in the Texas budget that is funded directly this way. It's nothing else is like this, and this is the only clinic at Md. Anderson is funded this way. So it's a very unique relationship that happened 2,006. And then what happened was 10 years later. Dana Farber opened a similar clinic without state funding. They just were scraping it up on their own and

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Terry Arnold: and that's the second clinic in the entire world open to treating. Ibc. Now, hospitals have been treating Ibc forever. But to have a dedicated research clinic is a different thing. Now, what I'm hoping is when you get your law passed. I want to go back to Massachusetts. Say, by the way, I want some line item budget funding

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Terry Arnold: to help secure this.

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Terry Arnold: Because when I mentioned how few grants are out there, if these guys don't get grants, they don't get funding, and we know there's a lot going on with the Government right now, and I don't want to get into that, but also too rare diseases don't get funding. And so these doctors are really taking risks with their careers

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Terry Arnold: by wanting to fund something that's hard to get money for. So you know, I'm hoping that we can piggyback and go, hey, Massachusetts! Not only do we want you to do this law, let's get because Dana Farber is is really ramped up to a good place.

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Terry Arnold: and they're working well with Md. Anderson, and they.

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Terry Arnold: you know they're they're good on their own now. And Philippa Lentz, I know, consulted with you a lot about this law you're writing to tweak it.

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johnsimac: Yes, the the.

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johnsimac: In fact, Philippa, is going to be part of the educational component

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johnsimac: that I will propose to the committee as we move down the road. My hope is that after my testimony nobody will say, All right, get out of here. This. We're not doing anything. They will. It'll go back to the committee, and they'll want to have some more information as far as numbers and statistics.

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johnsimac: and which we will work with them. But

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johnsimac: I had an email, got an email from

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johnsimac: a man named Thomas Pelkey, who's a legislative director for one of my sponsors.

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johnsimac: And he's he. Actually, he's this sponsor is on the Healthcare Finance Committee that I spoke with your joint committee on Health Care financing. They had a tour last week of Dana Farber

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johnsimac: and Thomas during the tour happened. The CEO of Dana Farber was there, and their their director of government relationships. And he just happened to bring up, he said, are you guys aware of Marnie's law? And both of them responded, yes, and both of them said, and we support it. So that's the top of the food chain at Dana-farber that supports Marnie's law. So I'm very hopeful. And then.

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johnsimac: because you're you know, you're a pit bull. Then once we get this passed and we come back and try to get the line item. But the problem is, I learned that

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johnsimac: trying to get my foot in the door.

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johnsimac: I the worst thing you can say is, that is, ask the Commonwealth for money the 1st time around.

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johnsimac: because then it goes back to committee, and then it gets discussed. Then again, then, you know, nothing happens. One of the points I've made in this is, is, it? Says.

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johnsimac: cost of Marnie's law. There will be no expenditures required by the Commonwealth or participating schools within implementation of Marty's law.

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johnsimac: Marty's army, Llc. Will be responsible for all costs. In addition, I had house counsel right into the language of the law.

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johnsimac: that institutions will be allowed to accept funds for the implementation, because I anticipated a nursing population saying, Well, this is just another unfunded mandate. We don't want anything to do with it, so I anticipated that. So I think we're on a good footing to move forward. Jerry.

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Terry Arnold: And see. And this is the things that we can do, too, because, like we our mission is very simple, like you say yours is, too. It only has 2 lines. We are to fund research for triple negative, inflammatory breast cancer, and we are to educate the medical and the like community. Now, like you said, preaching to the choir some of what we do, but also, too, we have written Cmes

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Terry Arnold: to where and we've sponsored medical conferences to educate the medical community. When I 1st started the Ibc network, I really struggled. Should I help people pay their light bills and their mortgages, and do things to help them, because I know the financial toxicity is huge and I and we felt that very heavily when I was going through treatment.

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Terry Arnold: But I thought I thought it was the way I could really, really help a woman. Long term is funding research and getting her doctors as much up to speed as possible. One of the things we struggle with is when we sponsor medical Conference getting doctors to come. They go. It's so rare I'll never see it. We had a Cme. That we offered live with Dr. Wayno, and it was well attended. And then we made it evergreen. So people could go online, and we made it free.

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Terry Arnold: and we had it specially credited, so doctors could take it as well as nurses could take it, and we had a hard time getting people take it for free online

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Terry Arnold: at their own discretion, because they say this is so rare. But I'm convinced it's not as rare. We don't know what it is. We miss it, and then the women are gone.

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Terry Arnold: and so I think you being smart about saying I'm bringing this money with me.

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Terry Arnold: so it's not unfunded. And that's something Ibc network can partner with you to help.

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Terry Arnold: Well, we have relationships with all these places you're naming. I know. If I call up Vanderbilt and say, Hey, you guys are to see there's a law coming. They're gonna want to be on it. And I have friends.

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johnsimac: No.

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Terry Arnold: Stage, 2.

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johnsimac: We we will. My my hope is is

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johnsimac: the educational component will be subject to approval.

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johnsimac: I'm thinking right now, just a 10 to 10 to 15 min video that you will anchor

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johnsimac: with the Dr. Lynch's part of it.

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johnsimac: And Deborah is part of it. That will be the the 1st thing we're going to embed it in the Marty's army website. But it'll be easily

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johnsimac: accessible to all the undergraduate curriculum problems. All you have to do is put it up on a screen.

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johnsimac: The point is is.

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johnsimac: I'm trying to make this as easy as possible for the people who will cause the most resistance, so that they can't say I can't do this because the Director of Curricula have to do nothing but download it.

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johnsimac: The nursing instructors have to do nothing but just put it up on the screen and at the end of the and and that's it. That's how I get in the door now after that, then then I'll start. In the future. We'll start to tweak that video to be longer, include more information. As we

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johnsimac: weasel our way into the curriculum and thought process of all those people who are ibc ignorant.

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Terry Arnold: No, I think it's very important, because

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Terry Arnold: and I hate to use the word awareness. Awareness. To mean to awareness to me means just sort of a vague

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Terry Arnold: familiarity. I want mastery. I want education. So if you can put something out there that says, this is some education to give you a starting point to at least broach a more reasonable conversation, and hopefully people won't have it. And and I hate to say this. But breasts are weird. They do weird things that we gain weight, we lose weight, they change, they have a mind of their own. I feel like in some ways, but also, too. We have somehow made

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Terry Arnold: the subject about our breasts funny. I know my doctor made fun of me when I went in, saying there was some. There's something wrong, and he, one of one doctor, told me they were aging differently.

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Terry Arnold: I assured him they were the same age. He thought I was being a smart owl I could play. I didn't know what to say. I mean, if this had been my nose, red, hot, cocked, and swollen off the side, they would have done tests, but there was something about it being my breast.

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Terry Arnold: and with your daughter she was blown off because she just had a baby. Well, candor doesn't care if you just had a baby.

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Terry Arnold: Cancer does what it wants to do. And these poor young women who are blown off. They've just had a baby, or maybe they're still pregnant is something that keeps me awake at night, and we've got to quit acting like

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Terry Arnold: cancer only happens at certain ages. Certain ways, certain times, because it's not true.

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johnsimac: Nope, that's right.

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Terry Arnold: And those are the people that most risk.

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Terry Arnold: Yeah. So you're doing something very powerful. Now I know you've got a piece of paper you want to hold up.

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johnsimac: Oh, yeah.

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Terry Arnold: For the people that are listening on spotify. We're going to have all kinds of information where you can find John, but you type in Marmee's army, or you look it up on the Ibc network you're going to find we're going to cross Link and share everything we can hold up your piece of paper for those of you that are watching on Youtube.

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johnsimac: Can you read that.

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Terry Arnold: And this says it's Marmee's army.org, and you can click on support. Marmee's law. It's MARN. IE. Is how you spell her name.

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Terry Arnold: But, like I said, you can find all this.

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Terry Arnold: and then you can write a letter of support, because, even though maybe when you see this, the time has passed for him to testify, but these letters can then go into other States.

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johnsimac: There's that and I'm

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johnsimac: they come in right away. The letters when people fill out that form because it's on the website, and the committee will accept supporting testimony up to 7 days after, I testify. So we have time to get a lot more letters out there, you know, to come in, and it can only help.

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Terry Arnold: But also we can also collect those letters like, if you go to Tennessee, go to Wisconsin, go to these other States you're talking about. We can say, Hey, we want to see this in our community, too, because what we're asking for think about it. All we're asking for is a 30 min window of conversation that could save someone's life.

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Terry Arnold: That's what we're asking for.

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johnsimac: To make it as easy as possible. I might bump that up with your suggestion to a 30 min video.

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johnsimac: But we're we're talking to an undergraduate nursing population. A two-year program, as I said that are, they probably have jobs. They're raising families. Just the anatomy and physiology requirements are overwhelming.

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johnsimac: So

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johnsimac: I want to get my foot in the door and just get them thinking about that, if nothing else. And we'll do more. That unresolved case of mastitis. Let's start with that. And then next year. Let's make a longer one. And the beauty of this is that it's it's separate. It's not going to be in their textbook. It's not going to be in all the papers they get. It's going to be a separate video.

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johnsimac: and all all it has to happen is at some point during a two-year undergraduate program. They spend 15 to 30 min learning how to save lives and millions of dollars in health care costs, and that's worth it.

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Terry Arnold: You know. I think of a slogan that Dr. Wano says he was the head of the clinic at Md. Anderson. He's now in Hawaii at the head of the breast center there, and he has a slogan. He always says, Think, Ibc, he said.

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Terry Arnold: You know, rule it out. But think, Ivc, and we don't think about it. We just we are kind of lockstep on mastitis or whatever. But just to have it back your mind. This could be something else now. I would love to be help you in any way we can. I really can't encourage people enough

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Terry Arnold: to help. I knew your daughter. She contacted me when she was diagnosed. I spent quite a bit of time with her, and you know it's so weird the world can be so small. I have a daughter named Natalie, who you've met, who lives in New York, and she called me one day. She was Mom, my good friend Liz, her good friend has Ibc.

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Terry Arnold: And Liz drove your daughter to all her chemos, and I thought, you know this world is so small. Now I know I'm in a world where I meet women with Ibc.

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Terry Arnold: But you know it affirms, though my feeling that this is not as rare as we think, because my daughter is good friends with Liz, who is your daughter's good friend, who went to every single chemo with her.

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Terry Arnold: You cannot convince me that this is rare.

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johnsimac: Yup!

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johnsimac: Me either.

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Terry Arnold: It's not, it cannot be rare.

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Terry Arnold: I was in a room the other day. I went to give a talk. I was asked the very last minute to give a talk at this tiny little church in this tiny little town. The church, literally, the town has a population of 300 people. It's about an hour from my house, and they were doing a breast cancer thing, and they asked me to come and do a talk.

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Terry Arnold: There was maybe 60 women in the room, and when I went into the room they didn't know I was coming, so nobody was thinking I'd be seeing. And at the end of the talk this lady walked up, and she said, I know who you are. I have A/C. I've been following you. I live 20 min from you, and you are one of the reasons. I think I can maybe live

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Terry Arnold: because I heard that you're well. And I thought, Okay, this can't be rare.

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johnsimac: Yeah. She lives 20 min from me.

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Terry Arnold: She didn't know I was going to be there. I'm in the middle of nowhere because I live in a tiny town.

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Terry Arnold: This happens to me all the time.

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johnsimac: Yup! Yup!

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johnsimac: Well, we

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johnsimac: one thing we'll never I mean, I'm you know you're preaching the choir like I said here, I don't think it's rare. I think it should never be called rare. At best it should be called misdiagnosed and underreported.

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johnsimac: and one of the things I mean

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johnsimac: we can't do a lot if we don't have an international classification for disease

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johnsimac: number that recognizes it, that that will open up so many other windows to research funding. But you know that that's coming right now.

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johnsimac: You know, we're gonna make Marnie's law.

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Terry Arnold: That is coming. I was always told we would never have an Icd number, but actually, there's some strong traction. We might get one this summer, and like, I said, that's a long story in itself. But anyway, I want to thank you for the above my heart that you're doing something to save other people.

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Terry Arnold: I could see how this would be.

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johnsimac: Back at you, dear lady.

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Terry Arnold: But you know you don't have to do this, and I know it's difficult. And you you've gone through a lot of struggles. But what a way to honor your daughter!

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johnsimac: And also.

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Terry Arnold: Teach your granddaughter when there's something in the world that's unjust.

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Terry Arnold: We can change it.

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johnsimac: Yup! Yup, that's what we're doing.

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Terry Arnold: Okay, so how do you want to wrap this up?

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johnsimac: Just by thanking you for everything you've done, and for being in my corner, and all the support.

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johnsimac: and thanking my daughter Marnie for being the person she was to inspire something like this

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johnsimac: in her life. Yeah, I will keep my promise to her. Her wish to have, which

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johnsimac: they learned from her to make a difference and and save other lives, and we will do it.

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Terry Arnold: And we will do it well, John, thank you for being with us today, and thank you for using this, this awful experience for for greater good.

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Terry Arnold: I hope people do get behind Marmee's army, and I would like you to donate and support what he's doing. Also. I hope people will donate to us to help us support you a bigger platform. But I'm always happy to chat up similar organizations who are doing good things because there's different ways that people feel good about participating.

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Terry Arnold: and and if being close to home with you makes them feel powerful, and that they're helping. That helps me. I want to see this get multiplied in other States.

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johnsimac: Yup!

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Terry Arnold: And together we're gonna do something. Stop Ibc forever. And that's our big, that's our big dream, right.

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johnsimac: No. Ibc. Past stage 3.

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Terry Arnold: Let's end it on that. Thank you. God bless.

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johnsimac: God bless also! Thank you, Terry.