2024 Susan G. Komen Advocacy Summit

[00:00:00] Adam Walker: From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

This week, nearly 300 Susan G. Komen Center for Public Policy Advocates from across the country are coming together to call on federal lawmakers to help us bring an end to breast cancer. Joining me today are two of those advocates who will be in DC to talk about their experience as public policy advocates and share how you too can join in on using your voice and echoing our message on Capitol Hill.

Ladies, welcome to the show.

[00:00:38] Linda Brooks: Thank you for having us.

[00:00:39] Adam Walker: I’m excited to talk about this. Such an important topic. And I love it every time we get to talk about policy. First off, can you each tell us a little bit about yourself? Just give us a little introduction and what made you become an advocate and join Susan G Komen in Washington, DC?

Linda, why don’t you start?

[00:00:54] Linda Brooks: My reasoning for joining was to try to make sure that we had a voice. All too many times we talk about things that we don’t have experience on. And I just wanted to bring awareness in some of the issues that we as breastfeeders. breast cancer patients and survivors experience.

[00:01:14] Adam Walker: How about you, Kristen?

[00:01:15] Kristin Blackwell: So my involvement with Susan Komen started actually over 20 years ago. My sister at age 35 was diagnosed with breast cancer, so I got involved with our local Race for the Cure at the time, helping to organize that event for several years. And then at that point, I started getting screened myself for breast cancer because of the family history link and did well for 20 years until this past spring when I got diagnosed myself with breast cancer through an MRI.

So after I finished all my treatment, I wanted to get re involved with, Susan G. Komen. We don’t have a local Race for the Cure anymore, so I looked for other opportunities and saw this on a social media post, and just thought this would be an interesting thing to get involved with, to be able to share my story and hopefully make some difference.

[00:01:59] Adam Walker: It is an interesting thing, and it definitely will make a difference, and I so appreciate the effort that you’re both putting in. So Linda, as someone who’s been to a Susan G Komen Advocacy Summit before, describe what it’s like. And what did you find so impactful about the experience?

[00:02:16] Linda Brooks: It’s an amazing experience.

It’s in itself as being, a newbie going into an area that you see on TV and hear about, but to actually be a part of. It’s an amazing adventure with me being a two time, 25 year breast cancer survivor. I was amazed at the many political people that I was involved in that had experienced cancer at some scheme of the game, either a family member or a friend that really touched me in a way that I felt like there was a sense of togetherness.

That we all felt the need that there need to be changes and better policies put in place. For all of us, no matter whether it be breast cancer or any other cancer, we need real good health care to make sure we don’t have those issues of, out of pocket expenses that we don’t need, medications that we do need that we can get, PET scans, MRIs or whatever, diagnostic testing we need that those are given and not put it on a waiting list.

So to be an impact to that and to make a change was a wonderful experience.

[00:03:33] Adam Walker: Oh, that’s fantastic. And Kristen, I know this is your first time. So I wonder, what are you looking forward to?

[00:03:39] Kristin Blackwell: I’m looking forward to being able to sit down face to face with people who are making decisions in Washington, DC.

And it just seemed like a really exciting opportunity to be able to share our stories. And they have so many women coming all at the same time. I’m excited to be part of that.

[00:03:55] Adam Walker: Yeah, I’d imagine being part of a big community like that would be really amazing. So Linda, let’s get into some of the policy stuff. What are some of the priority issues that Komen Center for Public Policy is calling on congress to support and to take action on?

[00:04:09] Linda Brooks: This year we’re focusing on access to breast cancer diagnostic act, which aims to eliminate patient cost sharing and diagnostic and supplemental imaging. The second act that we’re concentrating on is the Safe Step Act, which will require group health plans have an exception process in place for step therapy protocols.

And then the last one that we’re focusing on is the Screen for Cancer Act, which reauthorized the National Breast Cancer and Cervical Cancer Early Detection Program. These are issues that we’re very aggressive about and very passionate about, making sure that everybody has equal rights and equality to better health care.

[00:04:59] Adam Walker: That’s right. So important, we talk about that all the time on this podcast and so important, and we have to advocate for it and for one another. So let’s dive a little bit more into each issue, if you would and maybe both of you share why some of these pieces of legislation are critical to the breast cancer community. And what the passage of it would mean to some patients and to some survivors.

[00:05:20] Linda Brooks: The Access to Breast Cancer Diagnosis Act is an act that, the Center for Public Policy has passed similar legislation in states across the country. I think right now it’s a total of 26 that have passed. Two of them are waiting on the governor to sign off. So that’s a major impact.

The other one, is the Safe Step Act. Which, these are protocols that can be very harmful to patients by impeding patient providers and decision makers in delaying access to effective treatment. Again, those are things like PET scans that are needed and insurance company delaying.

And we’ve seen it in the past where they’re being delayed and people are dying before they can get them. So those are things that we want to make sure and ensure that we get those particular protocols in place where there’s not a hiccup. And lastly, it’s the screening for communities to receive early and equivalent ervices Screened for Cancer Act.

This Screen for Cancer Act will provide great flexibility, guarantees allowing them to further implement, innovate, evidence based intervention and aggressive outreach to observe communities through media, peer education and patient navigation. It would provide annual implement authorization increased for the to enable Congress to support this vital safety net program.

Again, it’s just ensuring that those needs as a cancer patient are met and that there’s not any roadblocks in getting the adequate and needed access to treatment and protocols.

[00:07:16] Adam Walker: Yeah, so important. And Kristen, I’m curious, looking at these different acts, do you have any thoughts or did any of these three acts mean more to you personally?

[00:07:28] Kristin Blackwell: Yeah, I actually asked to speak on the ABCD Act, the Access to Breast Cancer Diagnosis Act, because that one speaks to me getting the early diagnosis that I did through MRI, and I can’t imagine if a financial decision would have delayed my MRI and my eventual diagnosis. As part of that, the Affordable Care Act, gives us access to a lot of people, access to the screening mammography, but then there’s also often additional cost sharing for the additional diagnostics, and that can be hundreds to thousands of dollars for people, and I personally know people who have delayed getting an additional screening test and that can be an ultrasound, an MRI, anything like that. And if you have breast cancer, then it means that when it is eventually picked up, it’s going to be additional treatment, your chances of dying from the disease goes up and the cost for the insurance company is going to be a lot greater as well.

So, if they can avoid the cost sharing piece of it so that’s not part of what you factor in at the time that this is all happening, that can allow people to go ahead with whatever is recommended. And as Linda pointed out, Komen has been able to successfully help 26 states pass something similar to this at the state level.

It’s just that they want this as a federal program so that everybody has that ability.

[00:08:54] Adam Walker: Yeah, absolutely. That’s fantastic. I appreciate you sharing that personal connection and that’s really what makes the difference, I think, to lawmakers. And as we talk about policy is, connecting the policy to the personal stories, so that we can see how it affects individuals.

Linda, this all sounds like it has the potential to make a huge impact, not only on the ability to access needed treatments and screenings and diagnostic services, but also in addressing health equity issues. Can you share more about what Komen’s doing to address disparities in care?

[00:09:24] Linda Brooks: I think by being vocal and putting those different types of organization together, where we come together, I think we’ve got one coming up that we’re trying to get people together and do. Coming together and really talking about those issues that, especially in the black community, because we know that 40 percent of black women are dying at a rapid pace than their white counterparts.

So they’re doing a lot in getting in the community to make sure that the black community is aware of and know about those things. That’s in place through Komen, like the mammographies, things of that sort that will help enable us to move forward in a positive manner and be educated about the disease.

[00:10:21] Adam Walker: Yeah. I think people might be surprised by how many resources Komen has to offer. And so if you look into it, there’s just so many ways that Komen can help. Kristen, this is an amazing opportunity for advocates to come together to help make a difference in our country and in our communities.

I wanted to thank you both for sharing your involvement in this. It’s so important in getting out this information and helping us understand how these policies impact every piece of breast cancer. I wonder, Kristen, do you mind sharing how others could get involved and make sure Capitol Hill hears their voices as well?

[00:10:52] Kristin Blackwell: Absolutely. So you can text summit2024 to 40649. And you’ll get more information.

[00:10:59] Linda Brooks: We also have the Speak the Truth, advocacy program that Komen has put in place for the black community, that they can tap into to get useful information and protocols on what they can do to help enable them getting the health care that they need.

[00:11:18] Adam Walker: That’s right. Linda, thank you for sharing that. Kristen, thank you for sharing your story and your connection to these issues. Ladies, thank you both for the advocacy work you’re doing. It’s so important to the breast cancer community and we cannot thank you enough.

[00:11:32] Linda Brooks: Thank you.

[00:11:33] Kristin Blackwell: Thank you.

[00:11:34] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org and for more on breast cancer, visit komen.org. Make sure to check out @Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter @AJ Walker or on my blog, adamjwalker.com.