Financial Advocacy Services - A Patient's Perspective

Scott Steiner’s experience working with oncology financial navigator Dan Sherman, MA, at Mercy Health Lacks Cancer Center, started nearly nine years ago in 2007, when Scott was first diagnosed with a rare gastrointestinal cancer.

Recently Scott was interviewed for a Washington Post article on the growing field of financial advocacy for cancer patients, Tackling the Financial Toll of Cancer, One Patient at a Time.  One reason he’s telling the story of his experience is to spread the word about the difference these services can make for a patient.  In this conversation with ACCCBuzz Scott shares his perspective on the importance of financial advocacy services for patients with cancer.

ACCCBuzz: How did you first start working with Dan?

Scott Steiner:  I kind of stumbled across financial advocacy by good fortune. Dan was actually assigned to me as my social worker, my case worker, when I was first diagnosed with cancer.

ACCCBuzz: What was the process like, working together?

Scott Steiner: The first obstacle that we ran into was the treatment that was prescribed was not approved by my insurance company. Dan actually found that out before I did. He told me before I’d even submitted the claim to the insurance company that it would be refused. And then Dan told me not to worry, that there were options available and that he would help me walk through it to get the situation figured out.

Dan contacted my insurance company to appeal (again) the need for the treatment. They again refused coverage.  Then Dan secured free drugs from the pharmaceutical company as they provided assistance for off-label use. Over the last eight years we have also used multiple co-pay assistance programs when my physician put me on treatments that were covered by my insurance but the co-pays were unaffordable for me. So I have always been able to get access to all of my treatments via free drugs from the manufacturer or via co-pay assistance programs when my co-pays were too costly.

ACCCBuzz: So basically having someone knowledgeable about the resources instead of having to go it alone?

Scott Steiner: Absolutely.  A little bit about our experience. . . about four or five months before I was diagnosed, my son-in-law was diagnosed with cancer, and I had heard so many horror stories from my daughter about how she was battling to get any assistance at all, and they were doing everything themselves. They were contacting the drug manufacturers. They were contacting insurance companies. They were doing all of the leg work.

You don’t know what you don’t know, when you’re going into it. You don’t know the answers to the questions. You don’t even know what questions to ask. You don’t know what help is available. You don’t know the different organizations that are available to help with the different types of cancers. You don’t know which manufacturers have which financial assistance programs. You just aren’t aware of that information unless someone is there to tell you that it’s available.

ACCCBuzz:  You seem to have a collaborative relationship in terms of Dan working with you as you’ve moved through care.

Scott Steiner: It always felt like Dan was a step or two ahead of me, helping me to know what was coming next.  For example, he’s the one who recommended that I apply for disability. I really fought that at first. There’s the pride issue of wanting to provide for your family. And, if at all possible, I wanted to do that. But over the course of a few months, Dan walked me through that whole process and got me to a place where I agreed to go ahead with the disability application. Dan told me that most likely the first response would be denial. He told me what to expect. These are things that I know other people who are going through the disability process and the application process just give up on. You get denied, who wants to keep going?

You’re already fighting enough battles and having to process enough information. There is just so much going on. For either the patient or family to have the resources and time to fight these additional battles, it’s just overwhelming.

ACCCBuzz: What would you tell new oncology financial advocates who are just getting started in the field?

Scott Steiner: I think that financial navigators who know what patients are going to face have to understand that they are not just helping us to navigate the pitfalls that are coming. They have to educate us to know that there are pitfalls that we have to be aware of—especially when it comes to providing for your family. There may come a point with the cancer journey where you just can’t. Patients have to understand that. What Dan has always been good about helping me understand and work through is that the financial aid that is available, the disability that I paid into when I was working, these are all ways for me to provide for my family. And by not taking advantage of these resources, I put my family at risk.

ACCCBuzz:  Why do you feel it’s important to spread the word about the impact of financial advocacy services?

Scott Steiner:  I’ve been battling this for so long. I’ve been part of support groups. I’ve journeyed it with my own family. My son-in-law and then my sister were diagnosed [with cancer]. We lost her a few years ago.  We had so many contacts with people who were in the cancer journey; the more I learned about their battles, the more I realized what I had at Lacks Cancer Center and especially with Dan was not the norm. It’s not what was done at a lot of cancer centers. I just realized what a blessing it had been to me, and that there really is this need [for these types of services]. It’s a need; it’s not an option. There’s just way too much to handle when you’re dealing with cancer. If you can get the financial challenges off your plate, that’s a huge help because that’s what sinks you. If the disease doesn’t get you, the finances will.

ACCCBuzz: Any final thoughts that you want to add?

Scott Steiner:  Financial navigation doesn’t just help the patient. It helps the cancer center or the hospital. They are helping themselves [by reducing write offs and bad debt].

I think hospitals [and] cancer centers need to understand that these services need to be part of their care for their patients—just like they help by connecting us with psychological help when we need it, or transportation, or support groups. Financial assistance is just as important, if not more important, than all of those other services they offer help with.

Oncology financial navigator Dan Sherman, MA, LPC, previously served on the Advisory Committee for the ACCC Financial Advocacy Network. Learn more about resources and training for financial advocates available through the ACCC Financial Advocacy Network.

Blog updated 4/26/2018