Welcome to Prostate Cancer Uncensored, a podcast produced by ZERO – The End of Prostate Cancer. This episode is brought to you in partnership with Bayer. Today, our guest host is Twisted Sister’s Jay Jay French. He’s a rocker and author and a prostate cancer survivor.
Prostate Cancer: Uncensored podcast unfiltered discussions with researchers, caregivers, patients, and medical professionals about prostate cancer. Listen online, or subscribe and download on your favorite podcasting platform; episodes are available for listening on Apple Podcasts, Anchor.fm, Stitcher, Google Podcasts, TuneIn, PlayerFM, Pocket Casts, Spotify, PodBean, RadioPublic,
Welcome to Prostate Cancer Uncensored, a podcast produced by ZERO – The End of Prostate Cancer. This episode is about ZERO360. ZERO’s free, comprehensive patient support service to help patients and their families. Here is your host ZERO’s director of patient programs and education, Jeremy Patch.
Hi everyone. My name is Jeremy Patch and I’m the director of patient programs and education here at ZERO, The end of Prostate Cancer. Today, we’re taking an inside look at our ZERO360 program. ZERO360 is ZERO’s free, comprehensive patient support program. I’m excited that joining me today is one of our ZERO360 case managers, Beth Scott. Thanks for joining me, Beth, tell us a little bit more about yourself.
I worked in the medical office as a surgical technologist, helped the doctor during surgery and also worked as a clinical case manager. I was clinical coordinator there for about 22 years, but I always felt there was something missing. I felt like I really couldn’t help the patients as much as I wanted, especially when it came to insurance denials and things like that. We just didn’t have the capability of moving forward. I feel like this position has helped me make a difference, almost every day in somebody’s life.
A major part of what you do through ZERO360 is speak daily with prostate cancer patients and their loved ones. Could you talk a little about what being a caseworker means to you?
Being a case manager here is extremely a rewarding experience for me. Cancer diagnosis is really overwhelming to not only the patient, but I feel like the caregiver, the family, they’re all just as overwhelmed as the patient, not only appointments that they have to go to, medication side effects, transportation is sometimes an issue. I feel like I’m there by their side for them to just talk to me if they need to just talk or to refer them to somebody, a peer support person that they can show them and answer questions that I might not be able to answer.
I feel I’m there to walk with them through that whole cancer journey, whatever it may entail, not just insurance denials that I talked about before, but there’s a lot that goes on with patients when they get a cancer diagnosis. I feel like I’m there to help them with some of that stress that they’re experiencing.
Can you walk us through the process of what people should expect when they call and connect with a case worker through ZERO360?
Once they’re connected with a ZERO case manager it’s a one-on-one support service and of course, it’s no cost to the patient. Case managers do a lot of things. They might be able to look for potential sources of financial support, whether it’s for copays or physician co-insurances, transportation expenses. Some patients come to us and they can’t afford their rent due to their cancer diagnosis, utility costs. We help patients and we determine their eligibility for any financial aid programs that might exist through ZERO, as well as other external organizations.
We sometimes negotiate payment plans for doctors, whether it’s for the provider’s office or a hospital bill. We help patients enroll in insurance, whether it’s Medicare or Medicaid, social service programs, such as social security income, disability, insurance, Medicaid. Like I said, we help with insurance denials and appeals, but also with applying for social security disability. Medicaid waivers for patients that might need long-term care services. We do look and see if patients are eligible for clinical trials.
We review coding and billing issues and take that up, contact the providers and the insurance companies to make sure things are not denied based on some miscoding that was done. Again, help with the insurance appeal if it is denied, help guide offices on prior authorizations, and then talk to patients if they are still in the workforce. If they have any work issue that they might have like with short term disability or long- term disability, do they have questions about FMLA? Those are just in a nutshell of things that we do but it’s quite a bit of things that we do help with.
Can you describe how patients and caregivers are feeling when they first reach out to case managers like yourself?
Most people, when they contact us, they may have one thing that they’re calling us for. If somebody’s calling us, I can’t afford the gas to go to my appointment, but they may not realize how many things that they really need help with. In that conversation, in that initial conversation that we have with patients, they feel that we’re somebody that they can turn to, I feel like. Sometimes I feel like patients just really call us to talk to us, what can you help me with? They feel discouraged if they can’t afford their medications or they can’t afford their copays.
Then I feel like once they talk to us and realize that there is something that we can do, they feel a lot better, but again, going back to when they first reach out, it’s a journey. We keep saying a journey, it really is because when they call us and they just have, for lack of better term, a small need such as transportation, or I can’t afford my rent this month, what’s the real root of the problem. Then we start talking about do you need to apply for social security disability? Is this transportation that something’s going to be forever? Is it always going to be an issue with you going to the doctor? Is it just gas? Can you afford your car payments?
We delve into all those needs. Again, patients contact us for one thing and then down the road, it may be totally something different. My insurance has denied my chemotherapy medication, so then we start working on an insurance appeal. I think they feel good just knowing that we’re there by their side, somebody to talk to, somebody to bounce those issues off with.
You mentioned discouraged. Can you talk a little bit more about the emotional state of the typical patient or caregiver when they first call how they’re feeling?
Again, patients contact us. They may not even know what we do. We tell them exactly what we can help with, but I think they feel discouraged that the doctor says, this is your treatment and you’re going to be sick from chemotherapy or radiation. They may feel like they don’t have anybody to talk to about that. At that point, we may reach out to some peer support through the ZERO mentorship program. Then there’s some external organizations that also help with that. I think just hooking those patients up and those caregivers up with those outside people that may have gone through the same experience as they have, I think that’s a very helpful thing for them because I can’t always answer those questions. I’m not a male. I don’t know what prostate cancer side effects may be, other than reading it like they do.
Even the doctor, if he hasn’t had prostate cancer himself, he can’t answer the questions that sometimes the patient is looking to answer. I’m having this chemotherapy and the patient sometimes wants to talk to somebody that has had that same chemotherapy drug or that same radiation treatment. Or are there people out there that’ve had other things done for prostate cancer. I feel like a lot of men when they reach out to us and it’s in the early stages of prostate cancer, they really don’t know what to ask. At that point we usually do try to connect them with somebody else that’s gone through the same experience.
They ask us for treatment options for them to review. It’s a lot of information that’s discouraging to them at first because they don’t know who to ask. Do I ask my doctor? The wife is at home. She knows that there’s going to be side effects from prostate cancer. Is there somebody she can talk to? I feel like ZERO is a good place to start because we then connect them to other people that may be able to answer those questions. Like I said, somebody that’s already gone through that situation.
Can you share some examples and stories of patients that have reached out to you that you’ve helped find support?
Just recently I helped a patient. He originally contacted us for an insurance denial. He had gone out of network to a provider out of state actually. He did not know that it was going to be denied until he actually got there for the surgical procedure. He was told then that he could either pay a portion of the procedure up front, or he could not have the procedure done that day. He had already flown, he had already paid for his plane ticket. He already had things prepared at home. He had already prepared himself to spend the night and fly home a couple days later.
He went ahead and had the procedure done and he reached out to us afterwards. We did the insurance appeal for him. During that time, because appeals take a long time. We also reached out to the facility to ask if they had financial assistance. We were originally told that we only offer financial assistance to patients that live in this state, but I encouraged him to go ahead and apply. Never hurts to apply and that’s the same thing that they told him at the facility, go ahead and apply and we’ll determine that. We did the insurance appeal, and it was denied. Same denial, you went out of state, but we actually contacted the financial assistance department back again and he was given financial assistance.
They actually wrote off the balance because they realized he really needed to have the procedure done. He didn’t have the balance that he had started with, which was upwards to almost $20,000. They were willing to work with him. They accepted his down payment that he made, but he was not responsible for the rest. He was very grateful to ZERO because he felt like without us being with him to encourage him to apply for financial assistance, and then follow up with him and reach back out to them to ask them questions, that he wouldn’t have been granted the financial assistance.
Just recently, I helped another patient who contacted us for– he was having some difficulty paying for his copay of a medication that he takes as well as getting to his doctor’s office. He has to go every three weeks for chemotherapy. He was having a difficult time paying for that. We connected him with the ZERO drive and then some other copay assistance programs. He was able to not only get the medication and the infusions paid for, but also his transportation paid for. Very grateful patients, they can’t express enough how much they’re grateful that we’re here. Again, to not only help them with financial needs but also just support, like going back to the peer support. I feel like that is one of the best things that they get out of contacting ZERO.
ZERO is attempting to meet unmet patient needs even when the patient may not know they have it. Can you think of a time that you’ve been able to educate a patient or a family about programs like our mentor or caregiver connector?
Sometimes it’s just encouraging patients to, a lot of times they’ll say, well, I want resources for peer support, or I want resources for copay, but a lot of times patients are very hesitant to reach out. A lot of patients, especially older patients, they don’t want to reach out to an organization. They feel like I’ve been able to go my whole life without anybody helping me and then they get this cancer diagnosis. They feel very apprehensive reaching out to a stranger. Yes, I’ve talked to an elderly patient and his family, same situation. He was going out of network. He actually had out-of-network benefits.
He and his family did not know how to navigate the system to ask for a referral to go out of network, even though he had out-of-network benefits. Then the person that was affected, the patient, we had to navigate that situation. How do we convince the patient, yes, you have rights to go out of network. You have that. How do we go about it? They were very grateful to find out that they could ask for a referral to go to a medical center that had a prostate cancer specialist. Whereas when he was at home getting his local care, he was not getting the best care his family felt.
They convinced him to finally work with us here at ZERO so he could get an out-of-network referral where he got an option to have a whole cancer treatment center involved in his care and he’s doing really, really well. I feel like sometimes patients don’t want to take that step. What can this free service help me with? A lot of people are very hesitant to ask questions. As we’re talking to them, we do uncover that they do have other issues. I can’t afford my rent. We’ll have you apply for social security disability because you haven’t been able to work.
We could just talk all day about patients that during the whole time that we might have an appeal open, or we’re helping to apply for social security disability, that they run into other issues that they never thought they had. A lot of those, well, I got an insurance denial, but I thought because it was out of network, I had to pay it anyway. Or I had an ambulance bill because I had to go to the ER because I had some issue with my prostate cancer and they went ahead and paid it. Then once we look at it, we realize, well, the insurance should have covered it.
A lot of times as this is going on, it’s an ongoing process so we try to help them and once the issues are resolved, we always try to encourage them. If something comes up in the future, they’re more than welcome to reach back out again.
A lot of patients do call about asking for financial assistance, insurance issues, medical bills, things as you’ve discussed. Are you finding that a lot of those people also have peer support needs? You’ve touched on this a little bit, but do you often end up directing them to some patient support programs like those that ZERO may offer such as Us TOO Support Groups or mentor programs or caregiver connector programs?
Yes, during that process, as you said, a lot of times as they’re talking to us, well, they just have some questions about do you know anybody that’s had the surgery before, or I’m looking into this type of procedure. My doctor told me that I could just wait. Not only like I said, the caregiver has some questions, and connecting with those programs or is sometimes helpful because the family members don’t know what to expect either.
As we’re going through this whole situation, normally when a patient contacts us, if they start asking questions about what procedure should I have, who do I ask the questions for, of course, we encourage them to certainly reach out to their physicians, but we also encourage them to reach out to us to our ZERO mentorship and then the caregiver support, because that’s going to connect them to somebody that’s already gone through those same questions. They might be able to answer the questions again better than I can as a case manager and even better than a physician can.
As we wrap up. Can you tell us what your favorite part of your job is with working with these prostate cancer patients and their families?
I feel like I’m able to effect a real change and bring to the patients the real issues– I feel like every day when I’m on the phone with these prostate cancer patients and their family members– Again, it’s not always the patient that contacts us. A lot of times it’s the family member, whether it’s the wife or the child. I just feel like once they talk to us, they immediately are relieved that we can help with so many different issues that they may not even realize that they had when they contacted us. I just feel like it’s really enlightening, not only to me but to the patient.
We got a lot of good feedback saying that they were very excited that we could help them through these issues that they didn’t think they were able to get a resolution to. I feel like we’re really getting a real-life solution to something for patients that are all over the United States that we may never see. We don’t know who they are, but when we talk to them over the phone, they feel like they’re getting the best results that they can out of what we’ve tried to do for them.
Well, thank you so much, Beth, for sharing all of those stories, and thanks for all you do with ZERO360.
Thank you so much.
Thank you for listening to Prostate Cancer Uncensored, a podcast produced by ZERO – The End of Prostate Cancer. To download more podcasts and to learn more about ZERO360, head over to zerocancer.org.