Advocating to Address Barriers

Adam Walker (00:03):
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. Susan G Komen has long worked to mobilize our communities to take action. Susan G Komen center for public policy serves as the leading voice of more than 3.8 billion breast cancer survivors, 168,000 people living with metastatic disease and the scientists, healthcare professionals, caregivers, and members of the public who are concerned about breast cancer. Coleman works to educate people about public policy issues. So they’re empowered to become forceful advocates for themselves and their neighbors, and then unites their collective voices for maximum impact sound. Government action is critical for making the broad systemic and lasting changes. We need to save lives and end breast cancer forever. That means that Komen as a patient advocacy organization with firsthand knowledge of how breast cancer touches people and communities must advocate at all levels of government.

Adam Walker (01:13):
The center for public policy focuses on work to empower people and policymakers with knowledge, connect advocates together and mobilize everyone to act for lasting change. Joining us today is Molly Guthrie, senior director, public policy and advocacy for Susan G Komen Molly. Welcome to the show. Well, this is great. I’m really excited to talk to you and I’ll, I’ll confess, this is an area I don’t know much about, so I’m going to learn a lot. This is going to be great, but let’s start out. Tell us a little bit about yourself, your role and how you got involved at Susan G Komen.

Molly Guthrie (01:51):
Yes. so I might work backwards from those, those questions. So I was actually raised around Susan G Komen. So my mom brought what was then the race for the cure to Wichita powers, born and raised and you know forced but willing to volunteer at a young age and so volunteered for a while. And then when I was ready to start my professional journey it just so lined up that there was an opportunity at Komen in Washington DC. And so I, I felt like the stars were aligning to be able to work for an organization that I’d been around for so long and to go into the career in the space that I wanted to do as far as public policy. So I, I started with Komen back in 2009 and, you know, have been around now for almost 12 years both in Washington, DC, and now in Dallas and, and my role now, I oversee all of our policy and advocacy work. So we really talk about it in three buckets. So we have the work that happens in Washington, DC. Probably the, the work that gets the most attention when you think about policy and advocacy but then also great work that happens at the state level. And then most importantly to me is engaging our grassroots and the advocates and the patients and survivors on the ground to really compliment our work with the legislatures.

Adam Walker (03:35):
Wow, that’s fascinating. Okay. And so I would imagine there’s just a massive amount of work to be done in a massive number of issues that are, that are really important. So how does the center for public policy determine the issues that they’ll work on and why is this so important?

Molly Guthrie (03:54):
So another great question. And, you know, unfortunately over my time at Komen, that seems like that list of issues that we need to work on has just continued to grow and expand. But also knowing that we can’t work on every single issue that comes across, if we want to really see change happen and we want to be addressing issues. And so maybe five or six years ago, we implemented a, what we call our issue, vetting and selection process, which is a pretty detailed in the weeds process that takes about six months to get through. But the real take home from that process is that it’s really guided from the ground up. So we start with a survey to all of our advocates, the entire Komen community to hear what the issues are that are impacting them the most, because we want to be working on issues that will truly have an impact and save lives rather than make assumptions on, on what needs to be done and do something top down.

Molly Guthrie (05:01):
And so we started this process. It happens every two years now. So from there, we this past January launched our 2021 and 2022 issue priorities, again, for someone that doesn’t live in for you, this, the reason it’s on a two year cycle is because we follow the federal government. So each Congress runs two years. And so that’s how we came to the two year decision. It just wasn’t randomly selected, right? But our current priorities really focused on three different issue areas, one accelerating research. So ensuring that governments are contributing and chipping in for the costs of research, but also looking at clinical trial access, education availability, our second bucket around ensuring access to care. So making sure that there are inroads for people to get health insurance, whether that be Medicaid or private insurance or Medicare but ensuring that there’s a way to get into care.

Molly Guthrie (06:14):
But we also know, unfortunately that just getting healthcare health insurance doesn’t magically make everything better. Right. And that there’s still a lot of barriers that exist for patients. And so our, our last bucket of issues is really focused around alleviating that patient burden. So ensuring once people get into care and get access that we work to eliminate barriers whether they be for screening or diagnosis or treatment so that people can actually get the care they need when they need it, a novel idea, but something that takes a lot of work to get to.

Adam Walker (06:51):
Yeah. And so important. I mean, so important and you’re in, you’re doing so much good in the world with the advocacy that you’re working through. So so I’m curious then what are some specific legislation issues that you’re working on are the Koman’s currently leading?

Molly Guthrie (07:08):
So I would probably pick out two, maybe three where we’re, we’re really leaning in and leading the effort. So the first is around access to diagnostic imaging. So the affordable care act, which was passed a decade ago, I just celebrated its anniversary. But within the ACA, there were provisions included that eliminated the out of pocket costs for patients, for screening mammography which is a great improvement and a step forward. But once that loss started getting implemented it became very clear that really all that did was kick the can a little further down the road. So if you, you know, are, go and get your screening mammogram, and there’s something suspicious on that mammogram. If you’re a research breast cancer survivor, if you’re showing symptoms, then your provider often suggest that you get a diagnostic imaging exam done.

Molly Guthrie (08:16):
And that diagnostic imaging, even though it’s part of the diagnosis process comes with significant out-of-pocket costs for patients. And so you know, the ACA the intention was to detect cancers earlier. But unfortunately what it’s done is people get the screening mammogram, find out there’s something suspicious and then have to find the funds to be able to afford the diagnostic, to know if they need a biopsy and to know if they have cancer. So I’m obviously not ideal. So Colin at the state level a few years started introducing legislation that just takes away or eliminates the out-of-pocket costs for medically necessary diagnostic imaging. And so it’s something that we’ve seen success in. We, before this year had passed it in five States Arkansas actually just passed, we’re waiting for the governor’s signature. And then probably about 10 more States have introduced legislation during the 2021 session.

Molly Guthrie (09:26):
And again, without going too far in the weeds, but nothing is easy when it comes to health insurance. So the state bills aren’t enough because there are state regulated insurance plans, but then there are federally regulated insurance plans. And so in addition to the state bill, we are also pushing for federal legislation that would eliminate that, that cost share, but you, you have to have, have to have both. And then there are still a few loopholes that exist, unfortunately, but wow. Working to ensure that people can get, get their diagnosis and get into treatment and as timely as possible. But we also, yeah. Then we also know that it’s not just on the screening and diagnosis side, right. Once you get in, if you’re diagnosed with cancer, breast cancer and then you require treatments those treatments come with significant Mo most often come with significant out-of-pocket costs as well.

Molly Guthrie (10:29):
And so we work with in coalitions on several issues to reduce that out, out of pocket cost. But after hearing from our patients, again, we decided to take the initiative to take it a step further. So Komen has led legislation again at the state level that if you are a stage four metastatic breast cancer, patient insurance does not have the ability to put use to through step therapies. So I feel like I’m using so many wonky terms, but step therapy is also known as fail first. And so the idea of that protocol is, you know, a physician prescribes you a treatment, the insurance company, or the PBM, or whomever decides that that treatment is potentially too expensive, or there’s another one that they want you to try. And so a patient is forced to take that drug, have that drug failed them.

Molly Guthrie (11:33):
In some cases that has to happen multiple times before they can get access to the treatment that was originally prescribed by their, by their physician which is no horrible practices in my opinion for everyone. But especially especially just that and, and growth for those with metastatic disease that have such specialized treatment, but also, you know, don’t have time to waste failing a drug for 30 or 60 or 90 days before they can do that. So we’re working to, like I said, the outright prohibit that practice for a metastatic patient.

Adam Walker (12:11):
Oh man, I love that. And I’m glad you’re doing that work cause I agree that that does not seem like a good plan. So, so I’m curious as we’re gaining momentum through the pandemic here, how, how has the current pandemic changed your priorities over the last 12 months?

Molly Guthrie (12:32):
So it’s made it interesting. I think it’s maybe evolved our priorities, but to some extent just made them the issues that we were working on even more important. So I think, you know, any of us that were watching the news saw, you know, the coverage around people not getting their screening done either because, you know, they didn’t want to go to clinics or clinics and facilities had to repurpose, especially during, you know, the, the heat of the virus and that, you know resources were being redirected rightfully so to address the needs of, of COVID patients. But you know, with that comes a, a backlog of, of screening. And so ensuring that people have access to screening is critically important and even more so right now. But that also brings up the importance of coverage for diagnostic imaging as well, because when people delay their screening, they often go.

Molly Guthrie (13:38):
And finally, when they’re showing symptoms and then require that diagnostic imaging, it’s also exasperated disparities that we have long seen in the breast cancer space. So when you look at breast cancer, mortality black women die at a 40% higher rate than white women. And that was very similar for what we saw in COVID across the board. And so you know, a long time priority of ours at the center for public policy, but because of the eye opening data that’s coming out of, COVID, there’s more willingness for lawmakers to address some of those underlining causes of these disparities like systemic racism, social determinants of health a lot of those long time issues that exist that people have not been super willing to work towards an address. But the, the tide seems to be turning a bit in light of, you know, the, the impact and outcomes that we’ve seen with COVID. That’s good. That’s. And

Adam Walker (14:52):
So, you know, w with so many competing priorities, how do you draw attention to Coleman’s priorities? And are there any specific advocacy tactics that have given you particular success?

Molly Guthrie (15:08):
So I think there’s a few but probably the most impactful tool that we have as patient advocacy groups are patient stories and the patient community, whether they be someone in active treatment, in a survivor a family member of someone that’s had a disease just really putting a face to the issue. So if you think about lawmakers whether they be in state capitals or in Washington DC, they’re saying, you know, hundreds to thousands of different bills and pieces of legislation every, every session that they’re in. And so you have to find something that makes you stand out. And so the, the strongest tool in our toolbox is being able to put a face to the words on the paper, right, for the diagnostic imaging legislation, for example it’s not just words and insurance reform that we’re, we’re looking for. It it’s a true human impact. And that’s something that, you know, some of the other industries might not necessarily have that, that we do have in the health nonprofit space, and we’re making a true impact on, on human life. And I think that’s a hard thing to ignore when you’re a policy maker. And so part of the reason I think that we’ve also seen success on a lot of the issues that we work on.

Adam Walker (16:38):
It’s the, it’s the power of stories, right? We connect with, we connect with stories. That’s why we have a lot of stories on this show because we can connect and we can empathize. And I think it gives to your point, it gives you a lot of power in how you tell and how you advocate based on those stories. So Molly, this has been so good. My last question to you, how can our listeners become involved in these efforts in help affect change?

Molly Guthrie (17:06):
Yes. So, you know, I think the, the easiest thing is to get involved. You know, I think as we shared at the beginning, you know, policy and advocacy is something that you don’t know a lot about them and you’re in good company, right. And people also can feel intimidated as far as using their voice and the impact that they can have, but truly one, one person can make a legislator push a bill. They could make it, them supportive bill. And so, you know, feeling empowered to use your voice is the best thing that you can do. And through the center for public policy, we have an easy way for people to get involved. It’s called our advocacy insider program. And, and from that, you get an email or a text message that tells you when something might be happening at the state level, and we need you to use your voice or something’s happening federally.

Molly Guthrie (18:03):
And all you have to do is click one button and you can email your, your legislators. You can post about it on social and social media like Facebook and Twitter, and, you know, make your voice heard and you know, convenient, convenient timing. We’re actually getting ready to post our, our national Komen advocacy summit focused on, on change in Washington D C. And so we will be having a day of action next week. And so if you sign up to become an advocacy insider, you’ll have the opportunity to take action. That day, along with thousands of other individuals on some of the issues that I’ve talked about today and it’s, it’s very easy knowing that we were going to be on, on here, we set up a keyword. And so all someone needs to do is text real pink, R E a L P I N K two four zero six four nine. And that gets you into the system. And it’s a great, easy way to start being involved in the process and to potentially decrease that intimidation factor that often exists in this world.

Adam Walker (19:20):
I love that. I love that. Listen, say that again. Texts real pink. And what’s that number again?

Molly Guthrie (19:25):
Four zero six four nine, right?

Adam Walker (19:28):
It’s a text real pink to four zero six four nine to get involved today. That’s real pink, two four zero six four nine, Molly. This has been a fascinating conversation. I genuinely appreciate the work that you’re doing. Thank you for trying to improve people’s lives through the advocacy and the policy work that you’re doing. And thanks for coming on the show today.

Molly Guthrie (19:52):
Absolutely. Thank you, Adam.

Adam Walker (19:59):
Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real for more on breast cancer. Visit Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at AGA Walker or on my blog. Adam J