4 Things Patients Can Do for 2024

Levi Peterson  0:00  
I think it's really about having a clear goal, knowing what you want out of your healthcare for the year. Are you looking to finally diagnose that annoying undiagnosed thing that you're just dying to know what the heck it is? Well, you know, that's when you need to start making a list from you know, top to bottom.

Terry Wilcox  0:22  
This week on the Patients Rising Podcast, we speak with one of Patients Rising's Patient Helpline experts about what you need to do to set yourself up for the best possible health journey in 2024. We sat down with Levi Peterson, a resource coordinator and patient navigator with our Patient Helpline, and you're going to want to hear what they have to say. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, CEO of Patients Rising. I'm joined by my co host, who is currently looking for Boeing parts in his backyard. He's Bob Goldberg, co founder of the Center for Medicine in the Public Interest.

Bob Goldberg  0:58  
Yeah, Terry, you know, funny because I really hadn't been paying attention to the news, I was cleaning up after Hazel, our puppy. I started finding bolts and stuff. And I thought maybe the dog food we gave her was messing up her digestive system. But then I saw what was going on. And also, I have to report to the Transportation Safety Board FAA, a lot of airplane meals fell in my backyard unopened. What's surprising isn't the fact that they were unopened, but there were so many of them. And it ran the gamut from vegan to vegetarian to kosher, nobody was eating them. 

Terry Wilcox  1:37  
Well, today we're talking about setting patients up for great and more organized and smooth here. And we want to acknowledge that being a patient or caregiver is not easy. No matter what, unfortunately, the way our systems are set up, healthcare in this country is complicated. And it's why we spend every day working to make it more transparent, accessible, and affordable. And our Patient Helpline is dedicated to helping patients simplify the processes as much as possible.

Bob Goldberg  2:10  
Levi, whom you heard at the top of the show speaks with patients about their issues every day. And says the very first thing you need to do is write everything down.

Levi Peterson  2:19  
Document absolutely everything. A lot of people tend to not really think of this as a step, which I feel like can kind of impinge you more as a patient, where you know, if you're documenting everything, if you're taking pictures of all those weird symptoms, I mean, you don't know if certain things are going to be there when you go to see your doctor about whatever your chief complaint is. So being able to have a clear documentation of all of your complaints is always very helpful. It can actually help your doctor to make a diagnosis when he has that evidence present.

Terry Wilcox  2:51  
Well, writing everything down sounds like really good advice, beyond your healthcare, actually. Writing everything down is good, especially for households like mine, that have several patients with journeys and records to track. Now Levi tells us there's an efficient way to write it all down, that will help you and your doctor.

Levi Peterson  3:11  
Make a timeline. What's the number one thing you hear when you first walk into any doctor's appointment? Doesn't matter if it's your primary doesn't matter if it's a specialist, they always ask, how did you get here? What brings you in today? How did this start? And if you don't have a clear, concise version of how it started, it's not pretty, it can be very embarrassing trying to explain all of these different things. And when you're put on the spot, it's really, really hard to be able to communicate your needs effectively at that point. And then you end up maybe missing something that was really important. So being able to have that timeline of your health of when a symptom started, of how long it's been bothering you and how severe it's gotten, these are things that are going to serve your healthcare, and it's really kind of putting yourself in that advocacy seat, right? And you know, whatever you're dealing with these these different things, being able to have that documentation, that's just going to make it 10 times easier for the doctor to be able to find out what's going on.

Bob Goldberg  4:13  
Well, the first thing again, is to write it all down, and the second thing Levi wants us to know is to go ahead and get your medical records now.

Levi Peterson  4:24  
Don't wait until you need to see a specialist and another state who's really expensive that you desperately want to see to get your medical records, because it is a lot more difficult to get them when you need them fast. If you need them in 24 hours, you're looking at like a $50 charge for them being able to scan that, get it to you as quickly as you need it and potentially send it off to another facility. So if you get ahead of that, you're going to be 10 times better off and honestly everyone should have a copy of their medical records anyway, it is the number one most important part of your for healthcare journey, being able to have that text, being able to read through it know what's in there, know if you need to make amendments, because these are your rights as a patient. And if you're not educated on what is currently in your notes and what is in your medical records, you can't really advocate for yourself.

Terry Wilcox  5:17  
Well, it's so important. I mean, I can say this from all of the different records of this sort that I manage and look at is being able to start on the right foot. And honestly, if you're really paying attention, Bob, you know this, almost every doctor now has the portal. I mean, every system, you know, if you have health insurance, if you're in or near a big city, you're usually in some kind of system, where I live it happens to be Nova, everything is Nova. You know, if your doctor is with Nova, and even if your doctor is not with Nova, if they do a test on you, like my main primary care doctor is Nova, and my other doctors have, you know, like a gynecologist or whatever, that is not Nova. But if you just put on that record to send the record to your primary care doctor, then everything ends up in your Nova.

Bob Goldberg  6:10  
Yeah, yeah. Well, the big part of taking control of your own health is taking control of your own health on your own time.

Levi Peterson  6:21  
Don't wait. You don't have to wait for everything, you're not walking off of your you know, your doctor's timeline, this is your health, you know. There is such a thing as a waiting list that a lot of patients don't know about. And it's something I got to see a lot when I worked in transportation specifically with patients, we would see all the time that, you know, the doctors offices would be running around trying to fit people in because they had so many people cancel out on one specific day. If you have something that's really, really important, and you know, you have a specialist, maybe, you know, they're booked way out, you can still get on a waiting list and nine times out of ten someone's not going to make it so your chances of getting in to see that provider sooner are ten times better the moment you start asking about waiting lists.

Terry Wilcox  7:07  
Yeah, I mean, offices are so busy. And it's funny too, because I just made an appointment for something. It was an annual thing. And I went in I made the appointment. It's like, man, I can't get this stupid test until April. But then all of a sudden, I got a text and it's like we have you scheduled for Thursday at 3:00. So yeah, there is you know, sometimes this schedule is way out. But as Levi said, there are a lot of opportunities for people to cancel we, you know, yeah, people cancel things every day.

Bob Goldberg  7:37  
People yeah, it's just like with theater tickets or other kinds of reservations. Yeah, there's always a chance, there's always some segment that isn't going to show up. So it's worth putting yourself on the waiting list and being aggressive.

Terry Wilcox  7:53  
Now, everybody, don't forget that Patients Rising has a variety of classes and courses that can help you in whichever area you want to improve in. Do you want to be a better advocate for yourself? You want to learn how to take the next step in your advocacy journey? We have resources for that. Levi's fourth tip is learn how to advocate for yourself and other patients on a larger scale.

Levi Peterson  8:15  
So for those patients that are really looking for, you know, how do I speak to my doctor? How do I understand insurance? How do I find transportation and find these resources for myself? Or how do I caregive for another human being? How do I make their lives easier? What do I need to know? I feel like that's where the you know, be your own best advocate class is really going to be helpful for you. But also going hand in hand with that, legislative advocacy is just as important, and I'm also a graduate of the master class so I've gone through it. It was very cool to be able to kind of peel back the curtain on legislation because I didn't really understand what the barriers were in my care. And I think once I kind of got to see the inner workings of legislation and who is actually making the important decisions regarding our healthcare in this country. It makes it easier to advocate yourself because then you know what you're up against.

Bob Goldberg  9:10  
I know Levi, living down the street, sort of on the Garden State Parkway, a really great passionate well informed well spoken advocate. Levi doesn't just talk the talk, Levi walks the walk as well so, couldn't have a better advocate on your side as far as I'm concerned.

Terry Wilcox  9:32  
Well, you know in our interview leave I also said that that you know, the "don't wait" advice also goes for you and your legislators and that's absolutely true. It's one of the tent poles that you learn in the Patients Rising Advocacy Masterclass, and now many of the members of the Patient Senate, they work for you. Your legislators work for you whether they're your federal representative or your state representative, and you don't have to wait for a hill day to voice your concerns or call their office or send them an email. So we hope that everyone will take the opportunity to take a look at the Patients Rising Advocacy Masterclass and our other offerings. Consider joining the Senate, the Patient Senate. Our goal for the patient Senate just so everyone knows it's a large, very exciting goal, but we want the Patients Senate and patients rising to mirror Congress. We want our Patients Senate to mirror Congress, so we want 535 members, one in every legislative district as well as two key leaders in every state, that is our goal. So if you're interested in joining and getting involved and engaged in that way, you know, please reach out. You can head over to our website and learn more about it.

Bob Goldberg  10:39  
Now, we mentioned not having to wait for Hill day or fly in to voice your concerns. Terry, any breaking news about this year's fly in?

Terry Wilcox  10:50  
Well, I do Bob, I do actually have some breaking news. This episode is airing on Monday, January 15. And this Wednesday, January 17, we're actually opening applications for our fly in scholarships for this year's event. Now make sure you check out the show notes to see how you can apply for a scholarship that can help offset your travel expenses. It will not cover your entire travel expenses, but it can help offset your travel expenses. So we encourage everyone to go to the website and apply when this opens. We'd love to have you there.

This episode of the Patients Rising Podcast is brought to you by the Patient Helpline. The free service is a great way to get your questions answered about medical transportation, health insurance, even caregiving. All of these topics and more can be covered in a phone call or in an email to our helpline. Our navigators like Levi have handled issue after issue for patients and caregivers just like you. If you or someone you know has a healthcare question, challenge or issue, we are standing by and ready to help to get in touch, leave us a voicemail or send us an email using the link in the show notes.

Bob Goldberg  12:06  
Now before we go today, there are a couple of stories in the news we just have to talk about, starting with this one. I love this one Terry. HHS is named its first chief competition officer. And they say that the officer will work with regulators to tackle industry consolidation in an effort to rein in rising healthcare costs.

Terry Wilcox  12:32  
Well, the last part sounds good. I mean, I would love to rein in rising healthcare costs. Oh my gosh, seriously? Chief competition officer. I mean, it's I thought it was a joke. I literally thought it was a joke. I was like this is...

Bob Goldberg  12:47  
You know what they should worry about? I mean, I'll give you an example, is that just having a GlaxoSmithKline is replacing its primary inhaler flow vent with a authorized generic, the idea was to create competition in that class by offering a lower priced product. The problem there, of course, is that the PBMs and by extension, HHS will get fewer rebates as a result.

Terry Wilcox  13:17  
Look, I'm not going to pull any punches here. I often try to toe the line. I'm like, maybe this is the stupidest idea I've ever heard. I'm not going to pretend that it's smart. I'm not going to pretend that it's going to work. I'm not going to pretend that they have any idea what they're doing. I'm not going to pretend it's going to be a giant waste of American tax dollars. It is. That's all I can say about this. I don't have anything good to say about it.

Bob Goldberg  13:39  
It's just pre election gesturing. So, next.

Terry Wilcox  13:43  
They say they're going to work with the FTC. Oh, okay, great, let's get better health care by working...and the DOJ and the DOJ to focus on consolidation in the healthcare industry, right, sharing data, creating reciprocal training programs and developing new competition policy. What does that even mean?

Bob Goldberg  13:58  
I don't even know. I'm getting reflux just thinking about it. One last story. Eli Lilly has a new website that offers telehealth prescriptions and direct home delivery of certain drugs including weight loss drugs, according to a report from CNBC.

Terry Wilcox  14:20  
So Bob, you know, once I read the article, I felt like a lot of it has to do with some of the counterfeits as well as some of these other things that we're going to talk about here. But the potential for counterfeits of these very popular, you know, everybody wants to lose weight. 

Bob Goldberg  14:34  
Yes, yeah. 

Terry Wilcox  14:36  
So why is this a big deal though overall, Bob? why is this story a big deal?

Bob Goldberg  14:40  
Well, first off as you said, you know, supply chain integrity people are the main ingredient or the active ingredient in many of these drugs that regulate appetite and lipid levels and A1C levels, semaglutide, and people you can buy semaglutide from, from a sourcing and try to make it in your bathtub, and people are doing that in a counterfeit manner. So the supply chain integrity is one. Second: It's a way of getting around the denials that a lot of people are facing with these new medications. And that means that it offers people a way to get these drugs and may have to pay something out of pocket. But if they're willing customers, why not? I think it will help patients. Look, there's always bad actors, and there's always the outliers that I'm sure the media will pick up on. But by and large, being able to order a prescription or do telehealth, for drugs for mental illness, or for specific chronic diseases, makes a lot of sense.

Terry Wilcox  15:55  
So does this help at all with the PBM problem? I mean, how I kind of see it is if they were already covering them, if your insurance covers them, then you're already covered and you don't worry about this. But does it does this affect the PBMs at all, or the PBM is too big for this, you know, one website offshoots? I guess part of it depends on who is Lilly using, as their you know, sort of back end pharmacy delivery service, right> I mean, who is that?

Bob Goldberg  16:21  
That's a good question. I don't know, for instance if Eli Lilly is using this as a way to coordinate benefits. I don't think they can legally. So my answer, of course, you know, I'm wrong at least once every five minutes on the show. But my guess would be that this isn't going to help with the PBM problems. It's going to help people who won't normally have the drugs covered by their insurer but able to get it. So that's all for today. So thank you for joining us and make sure to follow the Patients Rising Podcast on your favorite podcast player, so you can be notified as soon as a new episode is live.

Terry Wilcox  17:00  
Until next week for Bob and everyone at Patients Rising. I'm Terry Wilcox, stay healthy.