Diversity, Fairness and Taking Action

Anyone can get breast cancer. However, compared to others, certain people often suffer more, have delayed access to needed care, and are more likely to die from breast cancer.1-5 These include people who: live in poverty, are of color, and live outside cities. This summary describes what people we interviewed had to say about the relationship between their breast cancer and other parts of their lives and identities including (but not limited to) their economic circumstances, their gender identity or sex, their race or ethnicity, and where they live. We also describe activism or advocacy in these situations.

Race, Ethnicity, Gender Identity and Healthcare

A number of people we talked to reported experiences with health care as it interacted with their sex, gender identity, race, or ethnicity. Merle said their gender identity is something they continually “bump up against” during “medically intensive experiences,” while being mixed race “was not super high up on the tier of things that mattered” to them in health care settings. Maria de Los Angeles noted there were always translators where she got her care, “and they were always very nice, too. Very good.”  Lisa S., who is Jewish, believes that if her clinician had been “surrounded by Ashkenazi Jews,” as would be true in a large city like New York, she would have received better care.

 

Casey says he was treated with 100% compassion as a trans man.

Casey says he was treated with 100% compassion as a trans man.

Age at interview: 56
Breast cancer type: Invasive breast cancer
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there was not one person ever made me feel uncomfortable, or different, or less than, or anything. There was nothing that they said, did, facial expressions. There was everything is 100-- and I was lucky. I was lucky that I'm not in Podunk. I'm extremely fortunate that our system is as good as it is. And they, that's [um] that’s a part that makes me sad, and then it makes me tear up. And I would tear up any given day because they are fantastic. And that's what gets people through things, the acceptance.

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I was fortunate, which then made me want to be okay with it also because if the people that are treating you for whatever it is, and you're kind of a little off, or, and they're not making you feel uncomfortable about anything, who you are, especially something that extreme, and I think that's extreme. I think a transgender person getting breast cancer, and having the scars, I think that's kind of a big deal to my head. It doesn't cross your desk every day. And then how do we treat it? How do we deal with this person? How do we, and they did it, and they talked amongst themselves because they told me that they did. They were like, “Oh, my God. This must suck for this guy. We have to do whatever we can.” And they did it. And they were nice, and my surgeon was decent. And she did what she could to keep what I paid to get to make me who I am. So [LOCATION] is the best. The clinics, everything, everybody that works there. That's what makes me tear up. It's the compassion.

 

Zulma found her doctors caring and skilled, but not always understanding of “how Latinos react.”

Zulma found her doctors caring and skilled, but not always understanding of “how Latinos react.”

Age at interview: 47
Breast cancer type: Invasive breast cancer
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I have my doctor, who is the breast cancer one; my oncologist, the urologist, the neurologist about my head. I have like five specialist doctors, and they are all very, very nice people. Very professional, very focused on being able to help people. But like I said, they know more about American people because we are in the United States. But they don’t know many times—how we Latinos react, or sometimes how we tend to be different.

Tengo mi doctora que es la del cáncer de seno, mi oncólogo, el urólogo, no, neurólogo, por lo de la cabeza. Tengo como cinco doctores especialistas y todos ellos muy, muy lindas personas, bien profesionales, bien enfocados en poder ayudar a la gente. Pero como les digo, ellos conocen más sobre la gente americana, porque estamos en Estados Unidos. Pero no conocen muchas veces cómo reaccionamos los latinos o a veces tendemos a ser diferente.

 

John thought his surgeon did not show concern for his feelings when ordering diagnostic tests.

John thought his surgeon did not show concern for his feelings when ordering diagnostic tests.

Age at interview: 60
Breast cancer type: Invasive breast cancer
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I had noticed that my left breast had swelled. And it was noticeably larger than the right breast. So, I went to my doctor. And, you know, it was an uncomfortable feeling. It was kind of ticklish. And it just didn't seem right. So, I went to my doctor. And I explained to him about how my left breast was swelled. And it was uncomfortable. So, he examined me. And he sent me to a surgeon who specialized in breast surgery.

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He really made me feel like I was interrupting his day when he said to me, “Well, why did your doctor send you to me?” And then I explained. And then, you know, he was examining me when he said, “It's breast tissue. Men have breast tissue.” That's the way he said it. I thought, well, that's obvious. But I said, “Something is not right. This is not right.” And that's when he reluctantly, he really sounded like he was reluctant. But he said, “Well, I guess I'll have to order some tests.” There was no concern. There was, there was absolutely no concern or showing of concern for my feelings and what I was telling him. So, but I thought to myself, “That's okay.” I knew then I was going to find another doctor.

Poverty, Geography and Insurance

Several people said they wondered whether they would get good care even though they were insured by Medicaid. Victoria was worried about “how are we going to cover everything…for the house, the bills” when her breast cancer forced her to stop working.  Zulma told her doctors “I don’t have money for reconstruction. I am fine.” John had to appeal to get his care paid by insurance because at first they rejected payment “Without investigating, they just dismissed it…[because] they see a man’s name and a breast cancer diagnosis.” Casey and Merle both said they feel lucky to live near a good academic medical center. In contrast, several people we interviewed who lived in rural areas described issues with access to care. Our summary on Insurance and Financial Issues includes more on these and related topics.

 

Katrina was scared about what kind of treatment she would get once on Medicaid.

Katrina was scared about what kind of treatment she would get once on Medicaid.

Age at interview: 42
Breast cancer type: Metastatic breast cancer
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And my insurance, I was at my job. I had to go on leave of absence. And at that time, my insurance was   failing because I was on a leave. I couldn't go back to work so I had to get on Medicaid. And they don't take Medicaid of [LOCATION]. So I had to get Medicaid of [LOCATION]. And then I felt bad about that. And I said wait a minute, I didn't work too many years in nursing. And I'll just worry about how they was going to do Medicaid patients. You know, I didn’t want to, if I would reach this point, they was going to like kill me off or whatever. I was just scared of that. You don't know how they're going to do you on Medicaid. You just don't know. So that was, I was scared about that and just panicking
 

 

Maria de Los Angeles was turned away from a clinic because she was uninsured.

Maria de Los Angeles was turned away from a clinic because she was uninsured.

Age at interview: 34
Breast cancer type: Invasive breast cancer
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So, I waited a few weeks for the results, and they called me and said that they wanted to speak with me in person, and then they told me that it was cancer. Yes, it was hard. I was worrying because we didn’t have the means, the money. And as a Hispanic or Latino, well, one worries, right? That what if the medical insurance. We searched for information. They sent us to a clinic where, by the way, since I didn’t have insurance, they rejected my first appointment.

Entonces esperéunos,unas semanas para los resultados y me llaman que, pues que querían hablar conmigo en persona. Y, pues me dijeron que era cáncer. Sí fue duro. Era preocupante. Porque no teníamos los medios y el dinero. Y uno como hispano o latino, pues se preocupa, ¿no? Que tal vez que el seguro médico. Pero gracias a Dios, es de, pues me ayudaron mucho. Buscamos información, nos mandaron a una clínica donde, por cierto, por no tener seguro, me rechazaron la primera cita.

 

Casey, who is trans, experienced issues with his insurance company.

Casey, who is trans, experienced issues with his insurance company.

Age at interview: 56
Breast cancer type: Invasive breast cancer
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They just were all confused over, “What?” Because I told them male, and all my records say female because it has to be. I mean, unless I change it, but I'm still going to because I had female breast cancer. So, it wasn't male breast cancer. It was female breast cancer.

So what was that like, in terms of having to do that, having gone through the transgender kind of surgeries and so forth?

And then—

And then having to switch back?   

Oh, it sucked. It sucks because you should, I shouldn’t have had to do that, my opinion. It should have just, but that's a whole gender issue thing. That's a whole another stuff going on. But once I told them, and then it confused them for a little bit. I mean, on the phone, “What? Wait. What? What?”

You said it confused them and it kind of sucked. Was it a morass, or was it a lot of haggling or hassling?

No, it was just to tell them. They were confused. Because everything was he, you know. If I had any other appointments prior to this, it was all he and everything else. And then they get the claim for female breast cancer, and they went, “We're denying this.”

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So, I had to call them up because they denied it, and that would've been hundreds of thousands of dollars.

Right.

And I was not going to pay hundreds of thousands of dollars. I don't have hundreds of thousands of dollars to pay for this stuff. I mean, I was only halfway into it, and they denied it all, and I went, “Crap.”

 

Kawanna worked throughout her illness to stay afloat financially.

Kawanna worked throughout her illness to stay afloat financially.

Age at interview: 38
Breast cancer type: Invasive breast cancer
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I was like, well, I need insurance. So I've got to keep working. Even if it's four hours, I've got to keep working, so I could pay for the insurance. I didn't know that I had other options. It pretty much was vaguely, paid family leave, 12 weeks. But then what? Because that time just goes by, and at this point, I was in the midst of the first most draining chemo. But I would just have to push myself for at least four hours. And I didn't know the HR person well enough to advocate for myself on that end. I need another choice. I wanted something that was going to say, “OK, you, you can stop.” Or I wanted someone from the beginning, probably, to advise me, “Listen, it's probably in your better interests, because things are going to get harder, that you might want to consider ABC.” But I didn't know any better, so I just pushed myself as much and as far as I possibly could.

 

Denise had limited options, due to her rural location, but advocating for herself proved helpful.

Denise had limited options, due to her rural location, but advocating for herself proved helpful.

Age at interview: 51
Breast cancer type: Invasive breast cancer
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OK. So, in the town that I live, it's a small town, but they do have a place where they do sell prosthetics. My insurance wouldn't allow me to go there, so while I was getting treatment, there was a place there in that town; however, they kind of closed that up. Then at that point, they said, "Now you need to go to [LOCATION] to get your prosthetic." [INAUDIBLE] First and foremost, I don't even have time to take off work to go bra shopping or go get prosthetics. Come on, people. So, I walked into my local place, and I just started crying, and I'm like, "I don't get this. I don't understand this. You're right in my back door. Help me out." And so, that's when a phone call was made, and they made it work magically. I don't know how, but it broke, it broke, again, it had to break all the way down and then voila. It's like, come on. You shouldn't have to fight just to feel like a human being.

Advocacy and Action

In addition to talking about their personal experiences with breast cancer, many people we interviewed described their own advocacy, activism, and actions they take on behalf of other people. In particular, people described advocating for people with metastatic disease; African Americans; Latinx people; men; people who live in poverty; and transgender and gender non-binary people. Amy is “very open about my [metastatic] disease…to raise awareness” because “there’s a lot of people with seemingly invisible illnesses.” Precious is “very much an advocate” for sharing information about breast cancer and black women, including with internist clinicians and at church. Zulma and Lisa J. both advocate for awareness of breast cancer in men. Susan acknowledged how good her own support system was when she was going through breast cancer, and has devoted herself ever since to an organization with a “mission to care for the poor and vulnerable.”

 

Asante says it is up to African Americans to “break the silence” about inherited breast cancer in their communities.

Asante says it is up to African Americans to “break the silence” about inherited breast cancer in their communities.

Age at interview: 44
Breast cancer type: Invasive breast cancer
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Well, I think that it's up to us, as African-Americans to educate ourselves and our community, and to break the silence. Breaking the silence on incurable or curable diseases is so important. But you have to understand that we have a systematic history of distrust that is not going to get broken overnight. It's not. And I wish that there was some simple plug that I could put on it, or a Band-Aid that could put on it to say, “Oh, it's going to get better.” I don't see it getting better. Black people do not trust the medical community. And I feel like they have a really good reason not to. Agreed. You know? And I think that until that changes, until we can advocate for ourselves in a real way, that's going to make real change. I can talk until I'm blue in the face to tell my dad to get genetic testing, and he is not going to do it. You know, he comes from an area where, you know, horrible things happened. And so I think that's where we're at. But I think it takes us, the younger generation, to try and advocate and be advocates. To say, you know, there are a few doctors that you can trust. You know, there are a few. But the best thing you can do is be your own, know your body. Talk to each other. You don't have to go to the genetic testing person, but we can talk to each other. You can know how your great grandmother died by asking your grandmother. You can know how your aunt died by asking people. Talk to each other.

 

Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.

Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.

Age at interview: 37
Breast cancer type: Metastatic breast cancer
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But, I guess, I just want to put it out there that this is a part of my creative work. And like, you know, I share openly about this. And so, also, I'm interested in participating in larger dialogues about this. And actually, that's been something that I haven't really figured out how to do that in terms of, I have done forensics or debate or public speaking in the past. And part of sharing my story feels like, I do want to find ways to enter into a larger dialogue. And there's a non-binary, black femme cancer, breast cancer survivor named [NAME], who I've been following on social media. And, you know, so it's like they are out there, putting   their story out there about their own breast cancer journey.

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And I just kind of feel like there just really aren't that many people out there coming from these So this is a very kind of roundabout way of saying, though, that I'm sharing this because I want to be a part of larger dialogues, but also that if there are others out there. Sometimes I think it's about finding each other, you know, and that sometimes when these narratives become more public, it's easier for people to find each other. So, I'm using [NAME] as an example of, their story was one of the few that I could find out there, where I was like, oh, I actually want to see more of this. But there's actually not a ton out there. I am a part of some Facebook groups for like non-binary or trans cancer patients. But it's a relatively small group. But, you know, it's like, I know those people are out there. We are out there. It's just that it's kind of just about how to bring more of these stories forward.

 

Zulma feels satisfaction about her work supporting Latinas with cancer.

Zulma feels satisfaction about her work supporting Latinas with cancer.

Age at interview: 47
Breast cancer type: Invasive breast cancer
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Now that time has passed, I went to take a course to support women with cancer for Latinas. Because there is a lot of help and support for people from here, Americans. But for Latino people who are going through that, unfortunately, there almost isn’t any. So, in the hospital, they told me that if I wanted to be a volunteer to help those people, support them, I told them yes. English, more or less, I understand it, I speak it. And my course I went and took it in English. I passed, and now I feel very, very calm. I feel such a great blessing that I am supporting women. I have supported several people who didn’t want, just like me, they knew that they had cancer and didn’t want to take treatment. They wanted to let themselves die, and I told them no. So, they asked if they would like to talk with someone who has already gone through this, they said yes. Some said no. And I feel very happy because the people I talked with decided to take the treatment and right now they are fine, with their families. Now, they have already had 2 or 3 years of survival. Because I feel happy to be able to help someone else.

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I have always been someone who likes to help people without receiving anything in exchange. But now I feel satisfaction and happiness to know that I have been helping several people, various women, who have gone through that. And when they find me, and they see me, they tell me, “Thank you. Thank you because if it hadn’t been for you coming to me, I don’t know what would have happened with my life.” And I tell them, “I am not a doctor. I am not a priest. I am nothing. Not even a psychologist,” but I can simply tell them and share my experience with them. And I showed them my photos, and they see me now, and they say “Wow,” I mean, it’s something. And I feel great that wherever they see me, people I see, “Can I hug you?”, “Oh, yes,” and they give me a hug. I don’t know. Something has changed for the good, for the good. I don’t regret anything. Not me.

Ahorita que ya pasó el tiempo, yo fui a tomar un curso para apoyar a las mujeres con cáncer, a las latinas. Porque hay mucha ayuda y apoyo para la gente de aquí, americana, pero para las personas latinas que están pasando por eso, desgraciadamente casi no lo hay. Entonces, en el hospital me dijeron que si quería ser voluntaria para ayudar a esas personas, apoyarlas, les dije que sí. El inglés, más o menos, lo entiendo, lo hablo y,mi curso yo fui, lo fui a tomar en inglés, lo pasé y ahorita me siento muy, muy tranquila. Siento una bendición tan grande de que estoy apoyando a mujeres. He apoyado a varias personas que no querían, igual que yo, supieron que tenían cáncer, no querían tomar tratamiento, se querían dejar morir. Y yo les dije, no. Entonces, a ellas les preguntaron si querían hablar con alguien que ya pasó por eso, ellas dijeron que sí, otras que no. Y me siento muy contenta porque a las personas con las que hablé, decidieron tomar el tratamiento y ahorita están bien, con sus familias. También ya tienen como 2, 3 años de sobrevivientes. Entonces, me siento muy feliz de poder ayudar a alguien

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Siempre he sido una persona que me gusta ayudar a la gente sin recibir nada a cambio. Pero ahora siento una satisfacción y una felicidad de saber que he estado ayudando a varias personas, a varias mujeres, que han pasado por eso. Y que me encuentran y me ven, y me dicen, gracias. Gracias porque si no hubiera sido por -que tú viniste hacia mí, yo no sé qué hubiera sido de mi vida. Y les digo, yo no soy doctora, yo no soy ningún sacerdote, yo no soy nada ni psicóloga, pero simplemente con decirles y platicarles mi experiencia y yo les enseñaba mis fotos, y me ven ahora y me dicen, wow, osea, es algo que. Y siento bonito que dondequieraque me ve, la gente me encuentra, ¿te puedo abrazar? Ay, sí. Y me dan un abrazo. Y no sé. Ha cambiado para bien, para bien. Yo no me arrepiento. Yo no.

 

John gets the word out that “men get breast cancer.”

John gets the word out that “men get breast cancer.”

Age at interview: 60
Breast cancer type: Invasive breast cancer
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So, I was just never afraid of it. I was never embarrassed. A lot of men feel embarrassment by it. You know a lot of men; they just don't want to talk about it. So, for me, that was never an issue.

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I wanted to get the word out. It was interesting because my cancer came in the month of October, November, both times. And I was going to work and buying a Diet Coke at the gas station and paying a dollar for a paper ribbon for breast cancer research. And I thought, ‘Wait a minute. We don't talk about men.’ I am, and I would do it. And I'd do it two or three times. So, I got the ribbon. I got the marker. And I wrote as large as I could, ‘Men get breast cancer’. And I put my full name. And I said to the clerk, “Would you please put this right here at the register right up front because I want people to see it?” I went to a 5K run and walk, and I went by myself. I kind of knew what to expect, what it was about. But I didn't feel I had a voice because there were hundreds of people. And I didn't think to bring a sign that said, ‘Men get breast cancer’. I just went. And I wore my breast cancer shirt. But I really, you know, kind of felt like I didn't know how to make my voice heard. So, when I came back the following year, we went. And my wife and daughters came. And they made signs. And I talked to my doctor. And I was able to, she talked to the organizer of the run. And I got to go and go on stage and hand out the awards for the runners in their various categories, first, second, and third place. But I also got to get up in front of 250, 300 people. And I got to say, my name is John, and I'm a male, two-time male breast cancer survivor, and ‘thriver’.

Support and Public Recognition

A number of people talked about specific kinds of support they had or wished for, or ways they want public recognition of breast cancer to be more inclusive of people with metastatic disease, men, and diverse sexualities, gender identities, and race/ethnicities. Zulma, describing what other immigrants we interviewed also noted, said “when you are far from your country, without family more than your husband and children, it is more difficult” and you have to rely more on immediate family. Janice observed, “Being a single black mother in America is very tough…so I suggest that you find people who can assist you.” Kawanna appreciated the wonderful older women who “embraced me and encouraged me,” but yearned to connect with someone more her own age, with a more recent diagnosis. Ronnie described how stigma and assumptions about inherited disease in her family reflect gender and class issues in Indian society and have made cancer more difficult for her. Our summaries on ‘Support from People and Pets’, and on ‘Advocating for Others and Public Awareness’,  and Mixed Reactions to the Pink Ribbon describe more about experiences with support and recognition.

 

Casey wishes his friends had asked if breast cancer was “messing up shit” with his gender.

Casey wishes his friends had asked if breast cancer was “messing up shit” with his gender.

Age at interview: 56
Breast cancer type: Invasive breast cancer
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I wish they would have asked, "Is it messing up your shit with your gender?" And I don't remember anybody asking me that. They could have, and I could have blocked it. But I don't remember anybody ever, my friends, asking.

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Did you wish that they had?

Yes.

Okay, and why?

Because then I could have explained how I was feeling because, if nobody asks, you can know how you're feeling about anything, but if nobody asks you, if people don't ask you questions, one, how are they going to understand it themselves or educate themselves? And it also helps to explain it to yourself. I mean and understand and get more information even within yourself. “Oh, that's why I was dealing with it like that.” Or, “Oh. That's why I took it certain things light about it. And then I didn't need anyone. ecause you don't know, and sometimes people just asking questions can trigger, or teach yourself, something about yourself. And then. So, I wish, yeah.

 

Merle does not relate to breast cancer’s pink ribbon.

Merle does not relate to breast cancer’s pink ribbon.

Age at interview: 37
Breast cancer type: Metastatic breast cancer
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What are your thoughts about pink ribbon?
I don't have a whole lot to say about it, except that I don't really relate. I know that there's a lot of conversations out there, especially among metastatic breast cancer patients, about, well, even just the capitalism that gets mixed in with pink ribbon stuff.   I, personally, to me, when I first got diagnosed, I just— And I think that's where I was aware, even in that moment, of navigating surgery and all of this stuff, that people feminize it   so much. I mean, there's nothing wrong with pink. But, I’m mean, just to pink wash everything and to have the narratives centered so much on, like, cis-women.

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And I just think about like, why is that? Does it have to do with-- it's kind of a tangential thing from pink ribbon. But just, it is a part of the assumptions that are made about who gets breast cancer and what they want, and like, you know, even the solutions that are presented to them.
And so I think like the whole pink ribbon thing can maybe, I don't know. Yeah. I don't know if I have a whole lot to say about the pink ribbon in itself, except that I found it, as a patient, to be slightly off putting.
 

 

Amy says the pink movement has helped breast cancer but leaves out those with metastatic disease.

Amy says the pink movement has helped breast cancer but leaves out those with metastatic disease.

Age at interview: 37
Breast cancer type: Metastatic breast cancer
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But so, I think that the pink movement helped with that, and it helped to normalize it a little bit and give a little bit of sisterhood to that. But now, it's sort of come to bite us. Because now, there seems to be a sisterhood in the early-stage world, where you're in it, and you fought it, and you’ve beat it, and yay. But the metastatic people aren't part of that conversation, because we're still in it, and we're always in it. We're in it until our treatments stop working. And when that bell rings, it's a heartbreaker. Because when that bell rings for me, when I ring that bell, that means I've finished a treatment I can't do again. That doesn't mean I'm done. So, so, that's, that’s kind of a microcosm of, of where the pink movement is juxtaposed with the metastatic patient.

Is there a movement for women with metastatic disease?

There is.  And if we could quit dying, we could get a lot more done. We have lost such powerful advocates in the past year or so. Pretty much all of the founders of an organization called metup.org are dead. One of them just passed away within the past month. We lost a lot of wonderful women in October, ironically, Pinktober. So that's, that’s the hardest thing, because the metsters can't get it done. We can't get it on ourselves. We have to have early-stagers on board with us. We have to have people that don't have cancer on board with us to understand the need specifically to save patients who are already sick. Because prevention is not going to help us. Being vegan is not going to help us. Drinking more water, getting exercise, thinking positive, none of those things are going to stop the disease at all. We need researchers to help us do that. They need funding. We need to make an appeal to where that is as popular is going to buy a pink blender. And the thing with the pink stuff is, more pink blenders doesn't mean more dollars.