Patient Care Services and the Komen Helpline

[00:00:00] Adam Walker: We need to talk about black breast health. Black women are about 40% more likely to die of breast cancer than white women, diagnosed at younger ages, and later stages, and with more aggressive breast cancers leading to poorer outcomes. This monthly podcast series Stand for HER, uniting to create a health equity revolution, opens a national dialogue that engages community members and organizations, healthcare providers, research scientists, and opinion and policy leaders to discuss recommendations and actionable strategies to advance breast health equity in the black community.

This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses. Learn more at Amgen.com.

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.

The path to care is daunting and complex under the best of circumstances. But it is further complicated for underserved populations, particularly women of color, who experience significant barriers throughout the continuum of care. Komen is focused on ensuring all people receive the care they need through our Patient Care Center, which seeks to remove barriers and serve as a dedicated care partner, helpful guide, and support resource throughout the breast health care journey.

I’m excited to be joined by Rick Aranson, Komen’s Senior Director of Patient Care Services and Krista Park Berry, Director of the Breast Care Helpline, to share more about how the Patient Care Center helps black patients overcome barriers to care. Welcome to the show, Rick and Krista.

[00:01:48] Krista Park Berry: Thank you.

[00:01:49] Rick Aranson: Thank you for having us.

[00:01:51] Adam Walker: All right, this is gonna be great. I, I appreciate having both of you on there. I feel like it’s gonna give us a, a nice, a good holistic kind of overview of this subject and I think it’s really important to get your perspective. So I’m gonna kind of bounce back and forth questions to each of you and, and then we’ll just chat to chat through them.

So, Rick, uh, to you first. The Patient Care Center supports people through a suite of four integrated direct patient services. Can you share more about what these services are and how they help empower black patients?

[00:02:21] Rick Aranson: Sure, Adam, and again, thank you for having us. We love talking about the Patient Care Center and Komen’s mission.

The Patient Care Center is an integrated suite of services that assures that no one faces breast cancer alone. Our programs connect people to high quality care and help them overcome barriers. In the healthcare system, we serve tens of thousands of individuals nationwide each year, and we provide those services to help people get the breast health resources that they need.

These services include the Breast Care Help Line, led with commitment and compassion by my colleague, Krista Park. The Helpline is really the gateway to the Patient Care Center. It offers support provided by trained specialists and oncology social workers, both in English and in Spanish. And it also offers breast cancer clinical trial education and support.

The Komen Financial Assistance Program, which helps people overcome financial barriers to care by providing financial assistance to help cover expenses related to activities of daily life, including housing, transportation, food medications, oral chemotherapy, medical equipment, home care, child and elder care, and more. Komen’s Patient Navigation Programs are designed to connect patients to support and resources throughout their breast cancer journey and to empower navigators with knowledge, skills, and solutions to expand our reach, to serve patients no matter where they live.

And the Screening and Diagnostics Program, which is currently in a pilot phase. This program provides mammography services for uninsured and underinsured individuals while maximizing utilization of the existing safety net. We serve everyone in need at Komen. And underlying everything we do is an understanding of the inequities that limit black women and other marginalized populations from getting the care they need.

These may include systemic racism, bias, and other social determinants that create barriers to care. The Patient Care Center works intentionally and in a culturally responsive manner to break down these barriers and facilitate access to services, assuring that everyone has a fair and just opportunity to be as healthy as possible. Look . Forward to talking with you more about these programs as we go forward.

[00:04:36] Adam Walker: Uh, fantastic. Sounds like some, some really important and great programs. So Krista, let’s hear a little bit about the Breast Care Help Line. What are some typical reasons that someone might call the Help Line? And just kind of give us a good overview there if you don’t mind.

[00:04:51] Krista Park Berry: Yes, no, thanks Adam. So a breast cancer diagnosis is a life changing moment for anyone, right? No matter who they are, where they live, how well resourced they are or not, and really no matter where an individual is on their breast health journey, our help line is really to design is, excuse me.

Our help line is designed to provide a safe and supportive space for patients loved ones, family members, really, for anyone seeking information for annual breast care, um, and information as Rick described. I would say that individuals contact our helpline for a variety of reasons. Right? Many reach out, feeling overwhelmed, having received a new diagnosis, or because they’re experiencing anxiety waiting on test results.

Um, these individuals are also oftentimes seeking emotional support from our team. Other times individuals are calling to learn more about the Patient Care Programs that Rick described, for treatment assistance program, patient navigation. Um, our specialists provide a variety of local and national resources, whether that’s for mastectomy, bras, or prosthetics, wigs, lymphedema, medical support, support groups, and other resource.

In particular, we also receive a lot of uh, calls for individuals who are uninsured or underinsured that are really concerned about their annual breast health in looking for low cost screening or mammography services. This was the case for Patrice who has given us permission to share her story. So Patrice reached out to the helpline after losing both her job and her health insurance, as a result of the pandemic, she was really, really anxious.

You know, very concerned about finding a low cost, a free mammogram due to her family history. So Patrice, who was a black woman in her early fifties, she shared that she had managed to survive two years without a paycheck, but had put off her annual screening. Um, and for Patrice, you know, that’s family risk, she had lost both her mother and her aunt to the disease.

So ultimately we were able to connect Patrice to the Florida breast and cervical cancer screening program to be able to access the screening that she very much needed. Um, and also ensure that there weren’t any further gaps in her healthcare, again, especially based on that, that family history and risk.

[00:07:15] Adam Walker: That’s good. That’s good. Uh, okay. So, uh, it’s actually then back to you, then Rick. Uh, is, is the next question. So. So Komen’s new Patient Navigation Training Program is training culturally responsive patient navigators to serve black patients in metropolitan areas with some of the greatest disparities. So how does patient navigation fit into the overall patient journey? And why is it so important to have culturally responsive patient navigators?

[00:07:44] Rick Aranson: So regarding the journey, first, while most helpline interventions are one time or short term, Komen’s Patient Navigation Program is an ongoing relationship through a patient’s breast cancer journey.

We are with them throughout the process from initial diagnosis through treatment and survivorship. Helping them stay in the continuum of care and giving them the support they need to maximize the likelihood of a successful outcome. In addition to our own team of navigators, we train community based navigators to enable them to provide effective, culturally competent services in their local communities.

Patient Navigation is an effective evidence-based intervention, specifically designed to reduce barriers that result in disparities. The concept actually was created by Harold Freeman in the early 1990s in Harlem as a way to bridge gap between the community and the healthcare institution, serving patients.

Patient navigators were meant to be reflective of the population they serve by offering culturally competent, personalized assistance. This has always been inherent in navigation, but additional newer research has shown that navigation is most effective when the navigator is not only culturally competent, but also reflective of the population they serve.

Our Komen Navigation Services and our Training Programs both emphasize culturally competent training as well as hiring a diverse workforce. So individuals can be navigated by someone who is reflective of their cultural experience. Our upcoming Navigation Nation Summit in this in September in fact, will focus on this topic.

[00:09:16] Adam Walker: All right. All right. So, uh, so Krista uh, back to you. One reason people might call the helpline is to apply for Komen’s Financial Assistance Program. Can you explain more about the process for receiving financial assistance and walk us through the patient experience when they call the helpline for something like that?

[00:09:36] Krista Park Berry: Yes, of course. I’d be happy to. Experiencing financial hardships on top of an already challenging diagnosis. It’s just an unfortunate situation for so many breast cancer patients. And one of the reasons we’re here today is to really continue to talk and talk more about how black women are more likely to die of breast cancer than white women.

And, and we know that financial hardship is something that keeps many, black breast cancer patients from receiving the care that they need. Um, while medical treatment and care uh, are typically the primary costs associated with breast cancer diagnosis, it’s really the general daily living expenses that really can get in the way, create those barriers that Rick talked about for individuals to get the care when they need it.

Um, the Financial Assistance Program at Komen is, is really there to provide a support uh, to really help offset some of the financial burden that so many black patients are experiencing. So essentially when an individual reaches out to the helpline, our team of specialists inquire a little bit more. You know, every patient situation is unique um, and in turn, we look to match that individual or with available resources, including our own financial program.

Oftentimes we’ll go through uh, eligibility criteria, walk them through the application process so that they know what to expect, um, we also make sure that we’re able to get them the application in whatever way works best for them, whether that’s an email, whether we mail them the application, or we even direct them to our online portal where they can apply online.

Our patient navigators are also available to help individuals fill out the application um, if that works best for them. The process is pretty straightforward. Our team has made it really easy um, to apply. Uh, a very simple form, uh, medical verification letter is needed to show in treatment, but other than that funds can really be used for daily expenses, rent, utilities, food, transportation, child or elder care.

Um, you know, when you think about something getting in the way of getting into treatment, oftentimes it’s these daily expenses. You know, just to be able to have that uh, car transportation or bus fair um, or to make sure that someone’s children are being watched while they can go and receive their treatment, really make a huge difference uh, for these patients.

[00:12:11] Adam Walker: Wow. That’s fantastic. I, I did not realize, uh, that it was so kind of all encompassing so I love that. I love that. Okay. Uh, so Rick, uh, the Screening and Diagnostics Program is another uh, really important program to help ensure all people receive the care they need through the Patient Care center. So can you share more about the voucher program and how people access and benefit from that Program?

[00:12:36] Rick Aranson: Course. Uh, this program serves patients at 300% of the federal poverty level. For an individual, that’s about $40,000 a year. For a household of four, that’s about $85,000 per year. Um, it serves these people in select cities where disparities are highest. These patients are uninsured, underinsured, or government benefits are not available to them. They apply to Komen for a voucher that covers the cost of screening or diagnostic mammogram or both if needed. We work directly with screening partners to deliver these services and the patient never sees a bill.

We are focusing on areas where the greatest health disparities exist and are happy to be growing this program to meet the unprecedented need for screening and diagnostic care. People can learn more about the program and apply through the Komen Breast Care Helpline.

[00:13:32] Adam Walker: So I, I, I heard one thing in there. I just wanna make sure that I heard that number correctly, especially for our listeners. You said it serves people at 300% of the poverty level, right?

[00:13:42] Rick Aranson: Correct.

[00:13:43] Adam Walker: So, so. Forgive me for being a little bit uh, ignorant here. I just wanna be sure. So when I usually think about financial services, I usually think about people at the poverty line or below the poverty level. You’re saying that people that are well above it that are 300% still have access to these funds to help them through these hard times. Correct?

[00:14:05] Rick Aranson: That’s correct. Uh, even if you are at the poverty level or slightly above, you are still facing incredible challenges uh, just to work through the activities of daily living. So basically we are multiplying the poverty level by three and giving more people more chances to access this critical care so they don’t have to make impossible decisions about deciding between putting food on the table or getting the breast care treatment that they need.

[00:14:32] Adam Walker: I love that. That’s fantastic. Thank you. Thank you for, for further explaining that to me. So, all right, Krista, nearly 16,000 people contacted the helpline last year seeking support. Can you share another story or any other stories that show the impact of the helpline in eliminating barriers to breast healthcare in the black community?

[00:14:55] Krista Park Berry: Yes, of course. Um, so you know, something to know about the Breast Care Helpline that I, you know, hope um, people can learn from and, and feel free to call and access our services is that we’re really rooted in eliminating barriers to breast healthcare. You know, black people shouldn’t have the same chances of surviving breast cancer as anyone else. So really our, our approach on the line is to take a strengths based social work model to really help improve patient’s quality of life. Um, so, you know, and, and really reduce burden, right.

So we’re oftentimes working with patients to say, Okay, Hey what’s in the way? What what’s making it hard for you to do these things? And let’s figure out a way to problem solve. And our Patient Navigators um, can take that even even further when, when working with patients. Um, but I do wanna share there’s a patient that comes to mind, Lottie, she’s given us her permission to share the story.

You know, she’s um, currently living with metastatic breast cancer. Really just emotionally drained um, and overwhelmed by her medical expenses and, and just her condition in general. So she reached out to us, uh, looking for financial support as we talked about, right. Her medical expenses um, have really just taken a toll on any type of credit card or checking a account or savings that she had. Uh, she’s living on a fixed income, like so many patients, um, you know, and was having to essentially ration food to be able to ensure she had enough gas to get to her uh, treatments.

So again, as I said, she was just emotionally drained. So really, you know, what the Helpline provided her was a space to be heard to receive that support um, and also get connected to both the Financial Assistance and Patient Navigation Programs. Um, in, in her own words, Lottie shared, It would’ve been so hard to get my radiation treatment,

no one could afford to take me that far because of gas prices and I had no extra money to pay as I lived on a fixed income. You know, Lottie and the other patient story I shared earlier that patients are having to make tough choices um, and often missing their medical care. We really encourage anybody who, whether it’s financially or emotionally challenged to reach out to the helpline. Our specialists are really here to, to address what’s going on with that individual. As I said earlier, every individual’s situation’s unique and we do have a lot of resources and information to help.

[00:17:30] Adam Walker: Hmm. That’s right. That’s right. And if you, if in, when in doubt call, right.

[00:17:34] Krista Park Berry: Exactly.

[00:17:35] Adam Walker: When in doubt, call. So. All right. Well, uh, last question. Uh, Rick, how can listeners take advantage of Patient Care Center Services?

[00:17:44] Rick Aranson: Thanks, Adam. You led us right into that one uh, with your last statement. Listeners can contact us at 1-877-GOKOMEN. That’s 1 8 7 7 4 6 5 6 6 3 6. We speak English and Spanish and use an interpreter service to communicate in over 90 other languages including American Sign Language. Or, listeners can email the Helpline at helplineatkomen.org. Or they can go to the Komen website at Komen.org and click on the Patients and Caregivers tab.

[00:18:17] Adam Walker: Wow. There’s so many different ways for people to connect and reach out. So if you have any questions, if you need to know anything, now you know where to go. Uh, Krista, Rick, thank you so much for joining us on the show today and thank you for the great work that you’re doing for so many people.

[00:18:33] Rick Aranson: It’s our pleasure. Thank you.

[00:18:34] Krista Park Berry: Thank you, Adam.

[00:18:37] Adam Walker: Join us as we Stand for HER to drive a health equity revolution, where we’ll create a world without inequities where black people have the same chances of surviving breast cancer as anyone else. To learn more about Stand for HER and advancing breast health equity at Susan G Komen, please visit Komen.org/healthequity. That’s Komen.org/healthequity.

This program is supported by Amgen. Amgen strives to serve patients by transforming the promise of science and biotechnology into therapies for patients with serious illnesses, learn more at Amgen.com.

Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.