Advocating for Financial Health — [VODCAST] Ep 12

Allen Beck and Rivka Shakow Beck were newlyweds when Allen was diagnosed with myelodysplastic syndrome. Allen and Rivka were thrust into a stressful, unfamiliar situation while trying to figure out how to manage mounting medical bills and prepare for Allen’s bone marrow transplant.

Enter financial advocate, Angie Santiago. Angie discovered grants to help pay for the premiums, tapped into hospital funds to cover the bills, mapped out coverage across state lines, and more. Tune in to hear their unique experiences as patient, caregiver, and financial advocate.

Angie Santiago, CRCS
Manager, Oncology Financial Advocacy
Thomas Jefferson University Health System, Sidney Kimmel Cancer Center
Advisory Committee Chair, ACCC Financial Advocacy Network

"Being part of the ACCC Financial Advocacy Network Committee helped to give me ‘true’ training because my original training wasn’t specific to oncology."

Allen Beck
Patient

“Angie Santiago was one of our biggest blessings. The message that I got from her was, ‘There are people out there that are willing to help.’ That gave me a lot of confidence to continue with the process.”

Rivka Shakow Beck
Caregiver

Related Content

• ACCC Patient Assistance & Reimbursement Guide
• Financial Advocacy Boot Camp
• Financial Advocacy Playbook and Toolkit
• Fighting Financial Toxicity
• Making the Business Care for Hiring a Financial Navigator
• [VIDEO PODCAST] Ep 11: Digital Patient Assistance Guide
• [VIDEO PODCAST] Ep 06: Financial Advocacy Playbook
• Tips for Helping Relieve Patients of Financial Burden

Transcript

CANCER BUZZ TV: Welcome back to CANCER BUZZ TV. I'm your host, Summer Johnson. On this show, we aim to bring you the news and the latest issues in cancer care you need to know today. We're looking at financial advocates and the true impact of this service on patients and their families. Allen and Rivka Beck were newlyweds in 2019. When he was diagnosed with myelodysplastic syndrome or MDS, he lost his insurance during treatment, and it was his financial navigator, Angie, who helped him find new insurance and a program that covered all the costs for his bone marrow transplant and treatment.

They have a powerful story and Allen and Rivka are here today, along with Angie Santiago, the manager of Oncology Financial Advocacy at the Sidney Kimmel Cancer Center in Philadelphia.

Hi, thank you so much for telling your story today. Let's get right into it. Allen, talk to us about where your insurance was when you got sick, you had school sponsored health insurance, but what happened when you started your treatment plan?

ALLEN BECK: So, in 2019, I got sick and I had to, I'm not going to say drop out of school, but I had to withdraw. I had to withdraw from all of my courses. Fortunately, at that exact moment, I was still under the health insurance plan through the school till the end of the year. My transplant was in September of 2019 and health insurance through the school, you know, is renewed annually.

So, starting in August, I wasn't a student at the school. In fact, I wasn't a student of the school beforehand, but I was still under the insurance. But the new school year, a new insurance year starts in August. And at that time, I wasn't in school. I wasn't planning on being in school. I was getting ready for a bone marrow transplant. And so they said, you're not a student here. You're not enrolled in any classes, let alone full time. And you cannot get health insurance through the school.

CANCER BUZZ TV: Rivka, I’m going to go to you. You met Angie, how did she help?

RIVKA BECK: She definitely knew what to do and helped preempt a lot of the stuff that I didn't know was going to happen. For example, like the health insurance, we were able to get an earlier, we knew, we tried to look to see if there was going to be a Cobra situation with, with Alan's college. But because it's not an employer, we couldn't, there was no Cobra option. Again, my health insurance, wasn't up to par for a potential bone marrow transplant situation.

And so that took us to the marketplace and she mapped out. I remember her sitting down with us and she had the three options. And because we lived in New Jersey, and we also needed a plan that would take us to Pennsylvania because we were in Jefferson. And she said, basically, you know, it's your choice, but these are the ups and downs. And this is what's going to financially get you the farthest with helping you pay for it because she was looking at a place that would help pay for our health Alan's health insurance, because the premium was talking about close to a thousand dollars a month.

CANCER BUZZ TV: Angie, this is a really tough time for the Becks, and you stepped in and helped alleviate some of this burden, but this is only one of your patients. This is what you do every day, all day long within the cancer care program. Why are these services so important for both patients and their caregivers?

ANGIE SANTIAGO: I think it, because it helps with being able to focus on what needs to be focused on, which is the patient, their journey, the financial burden. Yes, it can be there, but if you have a non-clinical support team, that's taking care of that, that's allowing the patients to be the patient, whatever medication you need, you're able to get it. You're not stressed about medical bills, but from the care team perspective, it's allowing the doctor to be the doctor. He's not having any burdens where the patient says, I can't get that cat scan because I can't afford that copay.

Or I didn't grab that prescription from my local pharmacy because I wasn't able to afford it. Financial Advocacy. And what a program brings to cancer center is needed. It's patients. Aren't going to know what's out there. I always joke with my patients and when we go over their insurance benefits. I get it, twenty years ago when I was picking out my first insurance from my first real job, my concern was what was my ER copay and how much do I have to pay for seeing my primary care doctor?

I didn't pay attention to my benefits. I didn't know what inpatient benefits were going to cover. I didn't know what prescription coverage was going to cover. And so, we see it a lot where patients have coverage, but they don't know how their coverage covers, so to speak. So, you know, being able to use your insurance, not having to worry about am I paying my rent or my mortgage or my grocery shopping. It's a huge deal. It allows the patients to focus solely on getting better and their care.

CANCER BUZZ TV: Alan, I'm imagining that as you're going through this, that having Angie gave you the ability to offload a little bit of that stress of that financial burden. Can you explain how she helped when you were going through treatment?

ALLEN BECK: Angie Santiago was one of our biggest blessings. We sat down with her. I feel like it was in March or April of 2019. And she did talk to us a little bit about, you know, what's going on and the diagnosis and whatever the plans are. And you know what life is like different kinds of background things. The message that I got from her was, you know, there are people out there willing to help. There are societies, agencies, and the hospital itself is willing to help.

It's not, you know, here take the money, but it's, you know, but there is help out there. And once I got that message, the next questions became easier. The next questions were okay, look up your financials, look up your bank statements, look up how much your rent is and your car payments and things like that. And, you know, navigating through that, knowing that there were people willing to help was much easier knowing, like I'm not, you know, doing this because I'm being audited by the IRS or whatever I'm doing it because there's someone who wants to help me. They gave me a lot of confidence to continue with the process.

CANCER BUZZ TV: Angie, this year, you're the chair of the Advisory Committee of the Financial Advocacy Network. What has this group done for you?

ANGIE SANTIAGO: I actually joined the committee in 2018 and I am the 2022 chair of our committee. And I, when I joined in 2018, it was almost like a breath of fresh air. There was so much stuff where it was like I was stationed in oncology in 2012, the world was solved by the business office. With three things, apply for Medicaid, apply for charity care, or a payment plan.

So, what the ACCC Financial Advisory Network allowed me to realize is that there are other people out there in this same role and building their cancer center’s program. And they get me, almost like we speak the same language and a sense that I can go over a case scenario with them and get feedback. And I wasn't necessarily getting that from within my cancer center or within my revenue integrity department because they weren't aware of all the external resources that were out there for oncology patients.

So being part of the ACCC Financial Advocacy Committee allowed me to get true training, if that makes sense, because my original training was not specific to oncology, but more, just like, Hey, these are the options for our hospital bill. And so, we have the Boot Camp, we have the module one and module two, we have the Ready Set Go Playbook. We have the ACCC digital guidebook for all the manufacturer programs.

It is just a lot of resources that live with an HR policy that when you're the first person started in your program or you're limited to one person, it just feels like you're part of a family. You know, I know social workers normally have exchanges and different specialties have like a exchange or like a place where they can go to the X questions. That's ACCC for us.

CANCER BUZZ TV: Thank you, Angie. And thank you, Allen and Rivka. For more resources on the ACCC Financial Advocacy Network, you can check the show notes or head over to the ACCC website at accc-cancer.org/FAN. On behalf of all of us here at CANCER BUZZ TV, I'm Summer Johnson. Thank you for watching.