Advocating for Others
Societal advocacy means working to make health care experiences and outcomes better for other people and for communities. People in our study provided many examples of advocacy work they do to make things better for others within the larger community of people with hereditary cancer and genetic syndromes.
Routes to Advocacy
Many of the people we interviewed have become skillful advocates for themselves, using their knowledge and what they have learned through experience to get the care they need. For some, becoming an advocate for others came from wanting to share what they have learned while advocating for themselves so that others can have the benefit of their hard-won knowledge -- and thus a better set of experiences. Others, like Jack, came to their societal advocacy when they recognized that while they themselves have been lucky, other people with the same diagnoses (both family members and strangers) may not have the same access to care. Still others, like Lisa J., told us that they have always been active advocates but their experiences with hereditary cancer have given a new focus to their efforts.
Desiree describes the natural progression from helping herself to helping others.
Desiree describes the natural progression from helping herself to helping others.
And so I then became aware that there are really a lot more health disparities than people really focus on. And there's just so much work that needs to be done as it relates to health, as it relates to cancer, as it relates to people that are medically underserved, underrepresented, et cetera. And so I continue to try to educate myself so that I'm able to educate others about the disease, and try to be informed, and try to be empowered, and try to have a voice because, unfortunately, I have found that I have had to advocate for myself more than I should with the health care system. But not wanting to just sit on the sidelines and be discarded or disregarded, I've just fought to make sure that I'm getting what I need so that I could have the quality of life that I want for myself, but also to help me to be able to advocate for others, whether it be family or just encourage other people on how to advocate for themselves has really been the, one of the biggest outcomes of my journey.
Raising Awareness
Some of the people we interviewed concentrate their advocacy efforts on raising awareness of or “breaking the silence” about hereditary cancer and genetic cancer syndromes. As Carrie said, “I have a, a responsibility or a mission to try to get the word out, not just to my family, but to other families to try to save lives.”
Precious speaks out about hereditary breast cancer in African American communities.
Precious speaks out about hereditary breast cancer in African American communities.
But you know because of breast cancer, I'm very active in advocating for breast cancer, working for [organization] as an advocate for them, and teaching people about breast cancer and the difference between metastatic and you know I guess I call it regular breast cancer, and just how families need to get mammograms, especially if it runs in your family and whatnot. And so, I hope I'm doing my part to help others who are struggling with this disease to you know have a better outcome than our family has.
Lisa J. warns men that they too are at risk of BRCA-linked breast cancer.
Lisa J. warns men that they too are at risk of BRCA-linked breast cancer.
I do a lot of talking about men with breast cancer.
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I tell men, “yes, you need to go get your breasts checked.” I wear a t-shirt, men have breasts, too. You know, and I've had men say, “men can't get breast cancer,” and it's like, yes, you can. You have breasts. You have a mom. She could have passed the BRCA gene to you, because you can get it.
Mea wants more people to be aware of FAP.
Mea wants more people to be aware of FAP.
Because I want the world to know that FAP is real, and it's out here. And we need help. And we need to find cures. And I wanted to talk about my story, and to maybe help somebody else, or, you know, create a foundation, or, like you said, a website, or more opportunities. I want the doctors to be more aware. They're doing the best they can, but there are people out here with rare diseases that need help as well.
Offering Support to Others
Many of the people we spoke with focus their advocacy efforts on providing support to others. Some people do this informally. Carrie, for example, blogs about Lynch syndrome. Paul offers support through Facebook. Ginny developed a tip sheet, a “recipe for low-impact chemo,” that she typed up so her oncologist could share it with other patients. Others get involved in formal support groups, often the same groups that they themselves have turned to for advice. While some of the people we spoke with are involved with broad communities of cancer patients, others sought out people who have the same hereditary or genetic-linked disease they do.
Kim works with a general breast cancer advocacy group called “Woman to Woman.”
Kim works with a general breast cancer advocacy group called “Woman to Woman.”
So, my way of contributing is like this. And then I'll support someone through a program called Woman to Woman if they ask for support. I'm one of the people who will support. That's how I give back. I do feel a sense of something to give back. I mean, the people were, like I said, beyond what I ever thought that they would be. So those are the two ways I give back more, trying to help, it's definitely-- I would not advise anyone to get online and just do searches and believe what you see and hear. I mean, of course, there's people on there that are telling the truth, but this seemed like a fantastic idea really to be able to get people's stories. That's what the Woman to Woman program is as well. You go have tea, have coffee, with someone who has been there, and they're talking to someone who's going through it. And it's helpful. It's very helpful to know that you've come out and you're going to live your life and so forth.
Briana is active with FORCE, an advocacy organization focused on hereditary breast cancer.
Briana is active with FORCE, an advocacy organization focused on hereditary breast cancer.
It's Facing Our Risk of Cancer Empowered. So it is a national, in the US, NGO that helps participants or constituents with hereditary breast and ovarian cancer, hereditary cancer syndromes, friends, families, find resources. I think the biggest thing that they are is a platform for resources. They break down journal articles into, you know, layperson language. They talk about policy. They have online message boards. They have local support groups. And that’s what I do. I'm a peer support group leader here in [location]. They have one-on-one peer navigation, where they like try to match you up. And I did this before I did my surgeries. Is I found a peer navigator-- somebody that was kind of my age that went through what I was thinking about going through. And I talked with a couple of them to get their experiences. And then, you know, I've mentioned this conference a couple of times. And that was a huge support for me. I mean, I was able to go-- at the time, I had just gotten back from Peace Corps, so I went on a scholarship, and got to sit in two days of classes, hearing doctors and researchers talk about the newest research that was out surrounding hereditary cancers. And I was able to like focus those classes on what I was about to do, which was the mastectomy. And then you know, I found my doctor there, too. So that was a really incredible support system for me. And then after my surgeries, actually at the conference last year, when I was finding my doctor and doing all of this preliminary pre-surgery work, I offered to volunteer with them, if there's anything that I could do to help the local support group here, kind of bolster it, and build it up, and make it stronger. And fortuitously, they were looking for another volunteer for the peer support group. So and that's what got me started with them, is just all of the resources and help that I had gotten from that group.
Sue thinks there is great need for more advocacy organizations specific to hereditary cancers.
Sue thinks there is great need for more advocacy organizations specific to hereditary cancers.
But now we need more people with other hereditary cancer risks to start following in their lead and creating an equal amount of advocacy. And there are some organizations for Lynch syndrome, but nothing as prevalent as organizations like FORCE for breast cancer, the Komen Foundation. It's out there. And in my state, if I wanted to find a breast cancer support group, it would be a snap. It would be super easy. And finding other individuals affected with Lynch syndrome is not that easy. So I think that there's a lot of work that needs to happen. And as we, I'm sure we'll discover other cancers caused by genetics in the future. We need to expand the advocacy for all of those cancers.
Promoting Policy
Some of the people we spoke to direct their advocacy efforts toward changing policies related to hereditary cancer. Policy issues that matter to our interviewees include improving access to health insurance and other types of insurance, and passing laws forbidding discrimination against people that have inherited risk for cancer.
Jack talks about the “political ramifications” of access to care for people with hereditary cancer.
Jack talks about the “political ramifications” of access to care for people with hereditary cancer.
It raises a clear awareness of the inequities associated with medical care in this country…a clear awareness of how inequitable the system is, and the changes that are needed….so it certainly generates an awareness not only of one’s own personal risks and how it gets done but for anybody who’s paying attention to the importance of everyone having access to the kind of health care that happily I have access to.
Sue’s focus is on the risk people with genetic cancer syndromes face of becoming “uninsurable.”
Sue’s focus is on the risk people with genetic cancer syndromes face of becoming “uninsurable.”
There's also a definite stigma associated with being insured. I'm fortunate that I was 50 years old when I found this out. I was pretty established. I already had life insurance. I already had long-term disability insurance to protect my family in the event something happened to me. But if I went to increase my health, my life insurance right now, or I think if my [close family members] were looking to get disability or life insurance, I'm not so sure that they would be successful. I have heard that there are some companies that would insure them, but I've heard many, many, many, many more times that they are not going to be insurable living with that stigma of having a hereditary cancer condition. That infuriates me. And so I feel part of my advocacy also is to make people aware, and perhaps someday we'll get some type of a change so that [others] wouldn't have to deal with that same kind of fight.
Participating in Research
Because there is so much that researchers and health care providers do not yet understand about hereditary cancers and genetic syndromes, many of the people we spoke to said they believe it is important to help others by participating in research.
Lainey is involved in a clinical trial.
Lainey is involved in a clinical trial.
And I'm involved in a clinical study to confirm a drug that they're trying to get FDA approved for Mesothelioma. It is approved for lung cancer. But they're trying to get it approved for Mesothelioma. And like I said, if I can help someone else further down the road, that's fantastic.
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And there might be another study involved. You know and just-- I want to do what I can to gather information to help others. Kind of feel like it's my purpose in life. You know? Because, you know, because, I've always kind of floundered. Going, “I don't really have a purpose in life. I'm here. But I want to do something.” So this, to me, is hopefully doing something to help someone else.
Sue is a scientific research advocate.
Sue is a scientific research advocate.
So I decided after a long career to retire and that one of my retirement goals was to get involved in advocacy for cancer, specifically for research into Lynch-related cancers, and also advocacy for people who live with hereditary cancer risk. I joined a volunteer group at the [organization] as a scientific research advocate. And I've had the opportunity to share perspectives from the patient side as the researchers recommend new ways of treating cancer for early detection, and that makes me feel super good that I can contribute in some way. In a way, I'm honoring my brother and my nephew who've been dealing with cancer. I want to make sure that the medical community and the scientific research community continue to find a way to either treat and cure cancer, or better yet, find a way to detect it earlier, or find a way that we can eliminate the threat of cancer from our lives.
Raising Money
Many of the people we spoke with help to raise money for causes related to hereditary cancer. Matthew contributes to the American Cancer Society. Charlene spends time volunteering for benefits that fundraise for cancer-related causes. Amy raises money for cancer research. Heidi helped stage a benefit called “Bowlin’ For a Colon,” in support of colon cancer research.
Professional Work
Some of the people we spoke to described how they are trying to embed their advocacy for people with hereditary cancers in the work that they do as professionals. For example Irina, Chelsea and Briana, who work in scientific fields, have sought to focus their jobs on cancer or cancer-related topics.
Lisa S. wants to work with cancer patients.
Lisa S. wants to work with cancer patients.
I work in a medical clinic. And I work in family practice. But I really would like to work in oncology. And I got the phone call today to interview with oncology. So I'd like to work more with cancer patients because I now have an understanding. It's not that. It's not the understanding that I've had. I would like to help people through their pain. I'd like to just, like I did with the bus driver. I'd like to take their hand or on the shoulder and say, “We're here for you. We're here for you.” And I can't necessarily do that in family practice. I do that occasionally when someone comes in and I can tell they're in pain. I said, I said, “We're here. We're here.” But I'd like to do that more on a daily basis. So yeah, it has changed how I feel.
Yes. Yeah. Giving it back, paying it forward.
Yeah. Yeah, giving it back, paying it forward. Definitely. That's definitely it. But I have that from my background too because I worked at an underserved community clinic, and where we saw people that people didn't want to see. And I miss that population. I miss that feeling of, we are listening to you. You are being heard. And now that I've got this experience with cancer, I'd like to be part of that. Yeah.
The Value of Societal Advocacy for Self and Others
A number of people we spoke to described how their societal advocacy has benefited others. Lainey noted how gratifying it is to know that she has helped “one person, or two people, or five people finally get off their butts and go get that screening.” Others explained the ways in which advocating for others has also benefited themselves. Sue called her volunteer work “a good stimulant for my brain.” Lisa J. found that being an advocate “changes the outlook,” allowing her to deal with her own emotions about being sick. Susan reflected on how her advocacy work has been part of her “emotional progress as becoming a more active person who takes responsibility and takes initiative.”
Precious says sharing her story has given her a purpose.
Precious says sharing her story has given her a purpose.
I'll be glad to go and share my story about metastatic disease. Because, you know, it's given to me a purpose. And so, I feel like everybody has a purpose for living. And so mine, right now, is to educate and advocate about breast cancer.
Post-cancer, Asante has a mission that links her past and her future.
Post-cancer, Asante has a mission that links her past and her future.
My purpose now is to educate myself first on the science of breast cancer in black women, women of color, and give back in any way that I can. In 2004, when my mother passed away, I wanted to do something so badly, but I didn't have the courage. And I was scared. And I didn't understand. And I was mad. Frankly, I was just really upset. And now, I want so badly to start something. And I have something in the works that I think is going to be great.