How Nurse Navigators Can Help You

Faith Barron (6s):
We can then direct them in the right path of where to go, to get the right support that they need.

Sheridan Keck (11s):
She was my saving grace, having to deal with cancer.

Terry Wilcox (16s):
The healthcare system is complicated, confusing, and not at all transparent. Because of that, many health plans have recruited the help of Nurse Navigators to connect patients with the services they need at a price they can afford. Up next, a Nurse Navigator, and her patient, share the value that these programs can deliver to the chronic disease community. Welcome to the Patients Rising Podcast. I'm Terry Wilcox, Executive Director of Patients Rising. A group that advocates on behalf of the 133 million Americans who live with a chronic illness. I'm joined by my cohost, who has been getting some serious fashion inspiration following two weekends at Coachella.

Terry Wilcox (59s):
He's Dr. Bob Goldberg, Co-Founder of The Center for Medicine in the Public Interest. Hey Bob!

Dr. Bob Goldberg (1m 5s):
It would have been a lot shorter if Kim Kardashian, and I, fought over a Coperni swipe bag that was made out of opaque glass and it shattered. So, I spent half my time there getting glass picked-out of my fingernails. I am healing, but never get between a Kardashian and her fashion accessory, is the watchword.

Terry Wilcox (1m 30s):
Especially not Kim Kardashian, NO Kardashian I would say.

Dr. Bob Goldberg (1m 36s):
None, but in any event recovering from that, I am back here to work with you to unpack the latest healthcare policy updates from Washington DC, and help people explain new rules and legislations impacting the chronic disease community, and also provide updates on the latest healthcare trends that can improve access to care.

Terry Wilcox (1m 58s):
One of the major trends we've been focused on, at Patients Rising, is health plan benefit design. This is how your health insurance plan is structured. From your deductible, to your monthly premiums, to the services included in your plan. This has been a priority of ours lately, since we've heard from many patients who struggle to meet their yearly deductible and cost sharing requirements.

Dr. Bob Goldberg (2m 20s):
Right. On a recent episode, we heard from employers who received Health Plan Hero awards for their plans, that reduce cost-sharing and improved care. One common element that they all had was a Nurse Navigator.

Terry Wilcox (2m 35s):
Right, and these Nurse Navigators are truly incredible individuals. They take the complicated tasks of coordinating between doctors, pharmacists, and labs, out of the hands of patients. They also help them find affordable care options that are optimal for their health. It really allows the patient to simply focus on their health and have the peace-of-mind that they are being taken care of.

Dr. Bob Goldberg (2m 59s):
Most importantly, everything is subsumed under this category. It helps personalize healthcare, so instead of being on hold forever with United or Aetna, or fill-in-the-blank, big name, health insurer, they can call or text their Nurse Navigator and get the help they need from someone who intimately understands their healthcare situation.

Terry Wilcox (3m 20s):
Today we heard from a Nurse Navigator who discusses the personalized guidance they provide to patients. Her name is Faith Barron, and she's truly a guiding light for the patients that she works with. We also get to hear from one of those patients. Sheridan Keck is the spouse of an employee from one of our Health Plan Hero awardees, Matheny Motors. She gives her story of how Faith helped her navigate her cancer diagnosis. Both of them join us in just a moment, but first this week's healthcare news headlines.

Robert Johnson (3m 54s):
In your Health News, is the pandemic over? It depends on when you ask. On Tuesday, Dr. Anthony Fauci said the US was out of the pandemic-phase. A day later, be clarified his comments, noting the country is out of the "acute component of the pandemic phase." Also, this week, drug maker Moderna wants the FDA to approve its COVID vaccine for kids under five. On Thursday, the company said two doses given about a month apart, provide the same level of protection as vaccines for older children and adults. Final approval may not come until June. The CDC this week confirmed the first human case of H-five bird flu in the US.

Robert Johnson (4m 34s):
A Colorado man has tested positive. There's an outbreak of the virus in wild bird and commercial poultry flocks. The patient is in a Colorado state prison. He was culling poultry as part of a work-release program. Finally, the federal government has released its plan to ban menthol cigarettes and flavored cigars. The concern is the impact the products have on black smokers. It's believed a ban on menthol cigarettes could prevent between 300,000 and 650,000 smoking deaths over the next forty years. The plan is just a draft and is not likely to be finalized until next year. That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (5m 25s):
Before we get into our conversation on Nurse Navigators, there are several stories and news we want to cover. First, Bloomberg put out an article about the overwhelming lack of black patients in Alzheimer's clinical trials. They found that only two percent of clinical trial participants are black. Yet they are at a higher risk of developing Alzheimer's than their white peers. We just put out a blog post about clinical trial diversity on Patients Rising Now, that we'll link to in the show notes, but Bob, this is a huge equity issue facing patients. Again, it shows how CMS's decision to restrict coverage to Aduhelm hurts minority populations by only covering the treatment for clinical trial participants.

Terry Wilcox (6m 8s):
Underserved communities will not be able to access this new innovation. I know they say, "You know there will be a process to apply." I mean, oh, you can only imagine...

Dr. Bob Goldberg (6m 18s):
Right, once you hear that...

Terry Wilcox (6m 21s):
Process to apply with the government. I mean...

Dr. Bob Goldberg (6m 22s):
Right. You might as well try to get that glass bag from Kim Kardashian. It's not gonna happen. You know, what really annoys me is, that everyone loves to make these gestures about racial health disparities and CMS is actually going to pay doctors to create racial health equity plans, which will lead to nowhere. When it comes to paying for a new medicine, and evaluating a new medicine that could help African-Americans with Alzheimer's, sorry, we're just going to make it that much harder.

Dr. Bob Goldberg (7m 4s):
It's hypcrosy and stupidity sort-of combined in one lethal dose delivered by your friends at CMS.

Terry Wilcox (7m 10s):
Well, right. Just to be clear everyone, we don't know in a broad population of patients, how well this medication works. That's the point of these trials. We don't know. We're not advocating that it works and everyone should have it. We're advocating that people who fit into the subset of patients that did show some efficacy for, should have access to try it, and be part of that trial process, so that their data is collected and we can determine if this is a line of defense for Alzheimer's patients, going forward, in an area where there hasn't been a lot of success. There has been a lot of innovation that has failed.

Terry Wilcox (7m 53s):
I'm hopeful that patients will push on this enough, that CMS basically did exactly what they said they were going to do, after everybody commented.

Dr. Bob Goldberg (8m 1s):
Yeah. The other thing I need to say very quickly is, that CMS does a particularly poor job of tracking the clinical benefits of a product after it was launched. In large part, because that's supposed to be the FDA's job. Really the solution to this is to rip-up the coverage restrictions and try to come-up with some kind of partnership, which I think patient organizations would be more than happy to participate in, to see who this worked for in under worth circumstances. So again, a terrible, terrible decision. It once again shows that the problem with clinical trial diversity really stems from the government regulations and outdated approaches to clinical trials that shouldn't be there in the first place.

Terry Wilcox (8m 51s):
I mean, that's basically what the Bloomberg article is telling us.

Dr. Bob Goldberg (8m 57s):
Well, along those lines, Terry, the Senate Health Education and Labor Pension Committee held a second hearing on FDA User Fees. Those fees are paid by manufacturers to the FDA to help the agency build-up its infrastructure to review new drugs and medical devices per it's agreed upon requirements in the User Fee Act. We'll continue following these updates, because it seems sort-of ponderous and boring, but these discussions are integral in getting innovations into the hands of the patient quickly. Just to prove the point, here's a recap from a discussion that we had a while ago with former FDA Associate Commissioner, Peter Pitts, on one of the User Fees that goes by the acronym MDUFA, which is the Medical Device User Fee Act.

Peter Pitts (9m 49s):
Whether you're bringing forward a medicine, or a piece of medical technology like for example, a stent, they are different centers in the FDA, funded through different User Fees, each of which has to be passed by Congress and signed by the President. We're coming up on renewal right now, so the debate really is what does the FDA want? What is industry willing to give? What does political support look like, because these pieces of legislation are generally referred to as "Must pass legislation". You can't have the FDA run-out of money and not doing its job for even a day.

Terry Wilcox (10m 24s):
This only happens every five years, which is why you've heard us talk about it quite a bit. We won't talk about it next year, because it won't be happening again until 2027, which will get here before you know it, as we all know. That's one of the things that we will see. Congress is not doing much on healthcare at the moment, not for lack of trying, but nothing's really moving. This is something the User Fee Act is something that must move, and must be reauthorized by, I believe it's September. I think it's September 22nd that it must be done by that specific date. This covers generic drugs, new pharmaceuticals and biosimilars, et cetera, and obviously medical devices.

Terry Wilcox (11m 9s):
Now we turn to our conversation with Nurse Navigator, Faith Barron, she's a registered nurse and works for Concierge Nurse Navigators, where she shepherds patients through an often complicated healthcare system. She helps individuals find the best locations for imagery or surgery and guides them through the details of their health insurance plan. For patients living with chronic, or life-threatening illnesses, she explains the role she plays in triaging a variety of ongoing healthcare needs.

Faith Barron (11m 37s):
When a member who is facing a chronic disease, or a big diagnosis that perhaps is going to warrant a lot of calls - First of all, most of the third-party administrators that we work with, default those patient calls to us. They will contact us and send us the prior-offset information so we can do outreach on their behalf, and be that contact person for the patient rather than insurance calling them, a clinical person calling them and the pharmacist calling them. Oftentimes we coordinate with the local independent pharmacies. We have a close relationship with the PBMs. If there are medication issues, or supply issues, the PBMs will reach out to us and then let us reach out to the patient.

Faith Barron (12m 20s):
It is more of a centralized one person can contact that patient and reach out to them so they are not overwhelmed with the system. We can explain it in terms that are understandable too, so they get it and it is not so intense.

Terry Wilcox (12m 37s):
That's great that there's one, key-point person, that is working with the patient and on behalf of the patient. So many patients need that.

Dr. Bob Goldberg (12m 45s):
I think we all need it.

Terry Wilcox (12m 46s):
We all need that. I need that for other things, I just need somebody to triage my life. It's tough. All I do now is go through all of my texts and I get so much information - We all do - Shoved at me in my phone. I'm constantly writing the word STOP and sending it. I'm like, why are you writing me? Stop!

Dr. Bob Goldberg (13m 11s):
Yeah, why are you sending me these things?

Terry Wilcox (13m 13s):
Why are you sending me these things? I can imagine if you're a patient and you're sick, and you're getting a call from the pharmacist, and you're getting a call from this person. It's nice to have one point-of-contact working on your behalf. One of the other big benefits is that when you do have a problem, you aren't passed from person-to-person at a call center for one of the big insurers, which has definitely happened to all of us. Instead, you have a direct contact with your Nurse Navigator who understands your situation at a deeper level.

Faith Barron (13m 41s):
If it's a billing issue or a claims concern, they love the fact that they can just take a picture, or send a picture of - I've had people send me pictures of their wound or whatever. Like, I need help with this, what do you think this is, or where do I need to go for help for this problem? They love that secure feature that they can text a picture quickly and get to us. We can then direct them in the right path of where to go and to get the right support that they need.

Terry Wilcox (14m 10s):
Which is great, because a lot of times - Even now I have to tell you, Jonathan and I, have pretty good insurance. It's good and he still doesn't know where to get his primary care doctor. You know what I mean? It's just like okay, he can't really find one that's taking patients. It's quite fascinating.

Dr. Bob Goldberg (14m 37s):
Also, if you're monitoring a chronic disease, and your coverage changes, say you're switching from one insurer to another or one insurer to Medicare, having a Nurse Navigator to continuity of care, and letting people know, a new doctor, that maybe you ought to order an EKG or look at the medication. There are small things and it's such a great investment in care. If you want to look at dollars and cents, it is also associated with avoiding unplanned hospitalizations, unnecessary healthcare spending, and not just dis-including the ability to not waste time shopping around for something when a Nurse Navigator may already have that resource for you.

Terry Wilcox (15m 25s):
Well, and pushing on the routine things that you need to do. Faith said to me, one of the things she focuses on, is preventative care and how important that is, and trying to stress that to the patients she talks to, work with her, and engages with at the various companies. I also asked Faith about the top five percent of patients who are really in need of comprehensive healthcare services. You and I both know, Bob, this is across the board. These are the people who use their health plan frequently. They need it to work. She said that while she's frequently touching base with this group of patients, she also provides key services and reminders for healthy individuals, so that they can keep-up with preventative care.

Faith Barron (16m 11s):
There's definitely that top five percent that have big, serious conditions and we talk very frequently. We are in touch a lot, but we also do outreach to everyone else too to let them know we're here supplying diabetic testing equipment for people who are healthy, but still have some health issues, or outreach on how to maintain their health. Make sure preventative screenings are being done, make sure they're in top of health and that we're not missing anything. We don't want to have a Stage 4 diagnosis of colon cancer when it could have been avoided with a preventative colonoscopy. We do a lot of outreach education, posters, phone calls.

Faith Barron (16m 53s):
We monitor risk-analysis based on the claims data from the TPAs that we get, and the PBMs will monitor what meds are being filled, so if there is a concerning med that comes up, we'll do outreach to the member. We do try to get involved before they hit that top five-percent of they're in a big, bad place.

Terry Wilcox (17m 11s):
So, Bob, do you have a Nurse Navigator in your plan? Have you used one with your health plan with Advantage or Medigap? What did you end-up getting - Advantage?

Dr. Bob Goldberg (17m 21s):
Medicare Advantage.

Terry Wilcox (17m 22s):
Medicare Advantage.

Dr. Bob Goldberg (17m 22s):
So, I don't have a Nurse Navigator, hopefully won't need one, but there aren't enough of those in the larger insurance companies. I think it's something, that when you think about it, and you've seen it in action, why isn't this being done throughout? I think a Nurse Navigator is someone that could coordinate, get ahead-of-the-curve, as she pointed out, preventing that advanced stage cancer by doing some simple tests. These are the things that we ought to bring-to-the-table more often to patients, and as she pointed out, maybe not get that five percent at all, because that's when things really get bad.

Terry Wilcox (18m 2s):
Right. Trying to keep your workforce healthy, obviously, is part of her job and she is hired by the independent benefit design plan that the employer has put together with their independent benefit designer. She is part of that package, but from all of the Nurse Navigators that I have had conversations with, they really are working on behalf of those patients. They have the parameters within which they work. If patients have a direct primary care contract, and if they go here they can get free service, or they can go to their doctor and pay $30, or another doctor and pay $30 if they're not a direct primary care, or whatever the case may be. They're working within the confines of whatever plan was designed, but they are working on behalf of the patient.

Dr. Bob Goldberg (18m 48s):
It is important to point out, that the plan they're working for designed this intentionally to create that connectivity, and kudos to the third-party administrators and plans that have thought and organized the benefit design around what patients might need, and help them before they do need it. It's all part of that whole benefit design issue that we've been hammering upon for the last few months, Terry.

Terry Wilcox (19m 14s):
Absolutely. I see a huge trend in benefit design changes and how it's all going to work in the future. It's a very interesting thing to watch as we sit here, but at the end of the day at Patients Rising Concierge, or any time we're talking to patients about navigation issues, it is all coming down to that benefit design piece. Absolutely every single bit of it. There are cost parameters in that, but whatever your benefit design is, is what you're working with for what is going to get paid for. We have more information on this story, and others mentioned today, in the episode show notes.

Terry Wilcox (19m 57s):
This episode of the Patients Rising Podcast is brought to you by Patients Rising Concierge. A new service from Patients Rising, that helps patients and caregivers, find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more. Our team is standing by to help you navigate the healthcare system and connect you to the services you need.

Terry Wilcox (20m 41s):
To learn more, visit patientsrisingconcierge.org, or email us at askusanything@patientsrising.org. Up next, we get to hear from the patient that Faith has worked with. Sheridan Keck is the spouse of an employee from Matheny Motors, a Health Plan Hero company, recognized for its outstanding plan. We heard part of her story during our Health Plan Hero podcast episode, but today, we're airing her full conversation with Field Correspondent, Kate Pecora. She shares how Faith helped her through her cancer diagnosis. Take a listen.

Kate Pecora (21m 12s):
Today I'm talking with Sheridan Keck. Sheridan is another member of our Health Plan Heroes series. She's going to speak to us about her experience on her health plan. So, Sheridan, what brought you into using this new health plan that you are a fan of in the past couple of years?

Sheridan Keck (21m 30s):
Well, it's what has been offered through my husband's employer. I believe this is the second year, if I'm correct, that they have been using JP Farley as their healthcare administrator. It's just something that we use through his employer.

Kate Pecora (21m 48s):
So, prior to having this particular health plan, were you having a different experience on the previous plan?

Sheridan Keck (21m 55s):
Absolutely! I mean, we've had many different health plans since we've been married throughout the years. I have not had the experience of how this is administered, in the way that this plan is administered, versus previous plans. Before, it was this is your plan, these are your benefits, end of story. This has been a different experience as in, there's just so many more people that have been involved in helping us through any process that we're going through, that I've never dealt with before. It's not just an experience of having services rendered through a provider and then having claims submitted and paid.

Sheridan Keck (22m 37s):
It's so much beyond that. There's a lot more involved than with previous plans that we've had. I don't feel like I've ever had advocates, or people on my side, helping me through these processes before this particular company.

Kate Pecora (22m 53s):
Can I ask, when you were using things like the advocates and Nurse Navigators, what were some of the things that you needed help with? Did you go through a circumstance where you needed more healthcare in this typical year than you would have needed previously?

Sheridan Keck (23m 16s):
Absolutely! 2021 was not my best year. In December of 2020, it was discovered that I needed further testing after an abnormal mammogram. I will say that fear kicked-in enormously, because ninety percent of my immediate family has been diagnosed with cancer. It wasn't necessarily an issue of - At that point knew it was going to be inevitable even without further testing. When I mentioned it to my husband, the first words out of his mouth were, "You need to call Faith." My response to him was, "What is she going to do for me?" because I had never had any health issues up until that point.

Sheridan Keck (23m 56s):
I'd never needed to figure-out a lot of the things that needed to be figured-out at this point and had not used a Nurse Navigator in anyway. So, my response to my husband was "What is this woman going to do for me?" Well, this woman has done everything for me. My husband reached out to her immediately, and we were on the phone, and have been in constant contact ever since. She was my saving grace having to deal with cancer.

Kate Pecora (24m 28s):
So, she was the first person that you reached out to?

Sheridan Keck (24m 33s):
She absolutely was. Even after I had my biopsy, and had the unfortunate experience of receiving my results via email, the first person I reached out to was Faith. I texted her. I didn't call my husband. I didn't call my family. I reached out to Faith and I sent her my biopsy results via email. She reviewed them, and we made arrangements to speak later that afternoon, and we did. After my meltdown that I had, she calmed me down, we came up with what was next and how to go from where we were at that point.

Kate Pecora (25m 14s):
So not only did she kind of help with the initial shock of diagnosis, but she also was able to help setting-up next steps and taking care of any of the concerns that you had around, how will this be paid for. Was that helpful to you as well?

Sheridan Keck (25m 30s):
Oh, absolutely! It was not just Faith. I will say there were some - I don't know what her position was called. I think because of the way the plan is administered, it can be difficult for some providers to understand how to submit for payment. I never had to get involved in doing any of that. It was either Faith taking care of it, or Darlene, who at the time was the account manager, or a different side of what Faith did. They would make phone calls and they would send correspondence. I basically told them what I needed and they helped me either figure-out where I needed to go. I already knew where I was going, because I had already chosen my surgeon - It was my mother's surgeon a few years ago.

Sheridan Keck (26m 15s):
I basically didn't have to do anything. When there were problems in figuring-out what was owed, and what to expect at my appointments, they took care of it. Basically, all I had to do was show-up, which was nice, because I had enough on my mind to not have to worry about the logistics of it all. Again, I just had to show-up and deal with what I had to deal with and not worry about the unpleasantries of insurance.

Kate Pecora (26m 43s):
As I understand it, you actually had your deductible waived. Can you talk to me about what made that possible.

Sheridan Keck (26m 51s):
To be perfectly honest, I don't know. It was offered to me. I didn't know it was something that was possible. I just assumed, because of standard healthcare, you have a deductible and you have percentage copays. I never knew that that was something that was even an option for me. Again, it was offered and taken care of. Any correspondence regarding deductible waives was articulated to whoever I was having my service done. They took care of all that for me. All I really had to do was show-up.

Kate Pecora (27m 23s):
So, as you go into this next year, you said you were initially diagnosed in December, 2020, let's talk about, we're now in 2022, how have things been since then? Are you still on this health plan? Are they managing long-term management of life after a diagnosis of cancer?

Sheridan Keck (27m 45s):
Yes. Again, this all kind of began in December of 2020 and I've been dealing with it all of 2021. Unfortunately, when I went for my regular mammogram this past December, they found something again on my mammogram. I'm in the waiting room at the imaging facility and I'm texting Faith, as here I am again, going through that again. Thank God that came back to be benign. I wasn't really prepared to have to deal with that again. I have voiced my opinion to my husband's employers, that I hope this is something they continue with, because it is a healthcare service that I'm not used to dealing with.

Sheridan Keck (28m 26s):
Having my own healthcare since I was in my early twenties, and I'm now in my late fifties, it's just a form of health care that I'm not used to dealing with. I'm hoping that my husband's employer continues with it, because it has been a blessing having to deal with what we've dealt with.

Dr. Bob Goldberg (28m 53s):
We want to hear from patients and caregivers all across the country about the healthcare policy issues that are important to you and to them. Please share your story right here on the podcast. Become our next patient correspondent. All you have to do to get started is send an email to Terry, and me, at podcast@patientsrising.org.

Terry Wilcox (29m 13s):
Thank you for tuning into today's episode. If you learn something new, share the episode with a friend, this helps us reach more members of the chronic disease community.

Dr. Bob Goldberg (29m 21s):
If you weren't following us, what are you waiting for? I mean, come on, follow us on your favorite podcast app. We'd love to have you join us and that way you won't miss out on a future episode.

Terry Wilcox (29m 35s):
Join us here again next Friday for the latest news, patient stories, and updates for patients and caregivers. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!