Last month, more than 250 breast cancer patients, survivors and advocates representing Susan G. Komen® traveled to the nation’s capital to call on federal legislators with one voice and ask them to support funding and policies that improve the lives of those impacted by breast cancer. This annual Advocacy Summit in Washington, D.C., included visits to more than 400 offices asking legislators to take action across a number of critical legislative issues.
Jamie Jones developed a passion for finding a cure for breast cancer when her own mother was diagnosed with Metastatic Breast Cancer in the spring of 2014. She got involved with her local Susan G. Komen affiliate and has co-chaired the Race for the Cure the last 2 years and will be co-chairing the first More Than Pink Walk in Cleveland in August.
After her mother passed away from MBC in October of 2017, Jamie wanted to get more involved in advocacy. Realizing there were many hurdles involved in getting women the proper diagnostics and treatment, she attended her first Susan G. Komen Advocacy Summit on Capitol Hill earlier this year to help make a change.
Jamie is a mother of 2 children, son Luke and daughter Elyse. They serve as a constant reminder for her to continue the fight to find a cure for breast cancer for the many generations to come.”
Adam: [00:00] Last month, more than two hundred and fifty breast cancer patients, survivors and advocates representing Susan G Komen traveled to the nation’s capital to call on federal legislators with one voice and ask them to support funding and policies that improve the lives of those impacted by breast cancer. This annual advocacy summit in Washington DC, included visits to more than four hundred offices, including legislators to take action across a number of critical legislative issues. To tell us how legislation can make a big impact on lifesaving research and critical patient care help me welcome Jamie Jones to the show.
[00:34] Jamie developed a passion for finding a cure for breast cancer when her own mother was diagnosed with metastatic breast cancer in the spring of 2014. She got involved with her local Susan G Komen affiliate and has co-chaired The Race for the Cure the last two years, and will be co-chairing the first More than Pink walk in Cleveland in August. Jamie, welcome to the show.
Jamie: [00:53] Hi. Thank you so much for having me.
Adam: [00:55] Well, do you want to tell us a little bit more about your story or about your bio as we launch in here?
Jamie: [01:00] Yeah, you covered a good part of it. I’m a mom of two. I live outside of Cleveland, Ohio and again, my mom was diagnosed spring 2014 and after losing her, I just decided that I didn’t want my kids to have to go through with me the same thing that I went through with my own mom.
Adam: [01:18] I love that and so you got involved. You’re getting even more involved you’re leading the first-ever More than Pink walk in Cleveland, right?
Jamie: [01:26] Yeah, really looking forward to it. Just decided I needed to educate myself on kind of the ins and outs of breast cancer, the barriers that a lot of women face and just found that Susan G Komen was a great way to get involved.
Adam: [01:39] I love that. So let’s talk a little bit about advocacy here, so research, funding, access to quality affordable care often starts with government action. What is the role of an advocate in public policy?
Jamie: [01:51] So there’s a few ways to look at advocacy. On the one side, the health care or system side, to give you an example, one of our local hospitals here they don’t give you the procedure that you need until it’s paid for upfront. So for somebody who’s uninsured or underinsured, that creates a barrier that they may not continue on with either a biopsy, mammogram, anything that they would need for a diagnosis. On the other side of that advocacy involves activities that help influence decision-makers. It could be traditional activities like lobbying, litigation, public education or it could also be relationship building, forming networks and leadership development.
Adam: [02:36] So policymakers that are well informed and educated about the needs of those living with breast cancer can influence and have positive change. Can you share just a little bit of your experience as a Susan G Komen advocate?
Jamie: [02:48] Yeah, I was able to attend the advocacy summit and there were four key issues that we were hoping to bring to the attention of the legislators. One of them was ensure access to breast health services. The CDC has a national breast and cervical cancer early detection program and that allows, again, the uninsured or underserved women to have access to treatment or even early diagnosis as we know that early diagnosis is key. About 9.8% of women are eligible for the breast cancer screening and out of those eligible women, only 10.6% are served so there’s a lot of women who don’t even know that it exists.
Adam: [03:30] Yeah, wow that’s a staggering number.
Jamie: [03:32] Yes, it sure is. So one of the second things that we talked about, the access to breast cancer diagnostics, you know diagnostic breast imaging is noninvasive and it’s usually a tool that doctors can use if there’s an abnormal screening or on a physical exam they find something that may need to be further investigated, and it’s a pivotal part of the process of detecting early cancers. If women can’t afford these they may delay or just forego the screening altogether.
Adam: [04:05] Right.
Jamie: [04:05] To give you an idea of the survival rates of breast cancer, if you have stage zero or one, it’s 100% the five-year survival rate versus stage four, it’s only 22%. So really drives home that early detection matters.
Adam: [04:22] Yeah, early detection is critical and we find out more and more that the more delays the worse the outcomes are, and what are some ways that people can get involved to help educate their representatives on breast cancer needs?
Jamie: [04:35] Again, your local Susan G Komen affiliate is a great tool. I was lucky to have Gina Chica tell at my local office who has been able to educate me on how to get involved. How to reach the legislators and really educate yourself on what you could do to help.
Adam: [04:58] Right, absolutely and if one of our listeners is interested in creating important changes that will improve the lives of those affected by breast cancer, just walk me through like what are their first steps? Where do they start?
Jamie: [05:09] You know I keep going back to getting in touch with your local affiliate. Susan G Komen, northeast Ohio has been a great resource for me. Also, you are able to get involved through Komen by texting Real Pink. It’s R E A L P I N K to 40649 and you’ll receive federal and local notifications about different issues in your area.
Adam: [05:36] I love that. Well, Jamie, this is great. I honestly didn’t know a lot about being an advocate in this in this way. It sounds amazing. Do you have any final thoughts that you want to share for our listeners about how they can become activated and more involved in this cause?
Jamie: [05:51] The one thing that I could say for myself is that by being able to pay it forward I was able to turn the pain of losing my mom into a passion to be able to help others.
Adam: [06:05] I love that. I love that you’ve taken something that is very difficult and you’ve turned it into something that’s very beautiful in its own way and you’re making a difference and an impact on the lives of people by doing that. I really appreciate that you’re taking that initiative.
Jamie: [06:20] Thank you so much.
Adam: [06:21] Well, Jamie, this has been great. Thanks so much for joining me on the show.
Jamie: [06:25] Thank you very much for having me.
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