Feb. 4, 2022

Where Does Congress Go from Here?

Where Does Congress Go from Here?

With Congress back in D.C. this week, the hill looks to debate on current legislation. This includes the  Build Back Better plan, which has several health policies that would affect patients, particularly those on Medicare. To discuss these...

With Congress back in D.C. this week, the hill looks to debate on current legislation. This includes the  Build Back Better plan, which has several health policies that would affect patients, particularly those on Medicare. To discuss these policies we hear from health policy expert Charla Penn from Winning Strategies Washington. While the future of BBB appears dim, she shares what policies might survive, be scaled down, or cut altogether. 

Plus, hear from Beth Waldron, a patient advocate who suffers from both deep vein thrombosis DVT and pulmonary embolism PE. Beth’s insurance company recently forced her to be non-medically switched from a blood-thinning medicine she’s been stable on for the past eight years. Learn more about how insurance companies can hinder the doctor-patient relationship for chronic disease patients across the country. 

And do you have a favorite Superbowl snack? Terry and Bob weigh-in.


Terry Wilcox, Executive Director, Patients Rising

Dr. Robert Goldberg, “Dr. Bob,” Co-Founder and Vice President of the Center for Medicine in the Public Interest

Kate Pecora, Field Correspondent  


Charla Penn, Health Care Policy Specialist, Principal at Winning Strategies Washington. 

Beth Waldron, Patient Advocate

Beth Steckler, Patient Correspondent


Build Back Better Plan

AARP Insurance 

Exclusive: US diabetes deaths top 100,000 for second straight year | Reuters

AARP's Stop Rx Greed Campaign Should Focus on AARP's Rx Greed

Terry Wilcox Op-Ed: AARP’s drug pricing conflict of interest

Real Stories from People Who Have Experienced Blood Clots - Beth Waldron | CDC

Non-Medical Switching Hurts Patients Rising Podcast Episode 

Center for Medicine in the Public Interest

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Charla Penn (6s):
There is a lot riding right now, not only in the administration, but it's the Democrats that are facing a midterm election. They need to have some results and they feel like this has been a long-time promise coming to address these sort of healthcare costs. Particularly for prescription drugs.

Beth Waldron (25s):
I personally, as a patient, would feel most comfortable with my doctor choosing my medication, as opposed to my insurance company.

Terry Wilcox (34s):
Today, a look at the fate of President Biden's social spending plan, Build Back Better. Where those healthcare policies in that legislation stand, plus some surprising conflicts-of-interest by one of America's leading senior organizations. That's all up next. Welcome to the Patients Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred-thousand member, strong organization of patients with chronic illness. I'm here with my cohost, Dr. Bob Goldberg, co-founder of The Center for Medicine in the Public Interest. He's also the self-proclaimed "dip-master" that you want at your Super Bowl party next week.

Terry Wilcox (1m 16s):
Okay Bob, let's settle the debate right here and right now - Buffalo chicken or spinach-artichoke. Do you have a preference?

Dr. Bob Goldberg (1m 23s):
Well, you need both, because you have Buffalo chicken, but the spinach-artichoke is your vegetable for the Super Bowl party.

Terry Wilcox (1m 31s):

Dr. Bob Goldberg (1m 31s):
That and ketchup. The last time I was at a Super Bowl party with my friends, someone decided to put out sliced-up cucumbers, celery and stuff, and that guy was banned for five-years. We need the spinach-artichoke, at least as a compromise to those people who are vegetarians.

Terry Wilcox (1m 51s):
What do you think about our Super Bowl? I mean, Los Angeles - The Bangles.

Dr. Bob Goldberg (1m 56s):
I am disappointed, because the Bills should be in the Super Bowl. They shouldn't have lost, because of a coin-flip. That being said, I always go for the underdog. In this case, you have the Bangles, that haven't been to the Super Bowl in 30-years. With all due respect to our Rams fans, in the Patients Rising community, I am going with the Bengals and frankly, Terry, all of this is just filling-up my time until baseball season starts.

Terry Wilcox (2m 30s):
I know.

Dr. Bob Goldberg (2m 31s):
Which may not happen. Speaking of upsets and games, Congress is back in town. Once again, we're trying to deal with legislation that will probably impinge, or affect access to care, for people in our chronic disease community.

Terry Wilcox (2m 46s):
We're continuing to track the Build Back Better Bill for our listeners and what folks both on, and off, Capitol Hill are saying about the health policies within this massive piece of legislation and what the compromises might be. This week I spoke with Charla Penn, from Winning Strategies Washington, a government-relations firm based here in DC. Charla has her finger on the pulse of all the health care measures within BBB, that's Build Back Better. She gives patients and caregivers an update on what to expect.

Dr. Bob Goldberg (3m 17s):
Then we're going to talk about a little company, or organization, called AARP, which used to be the American Association of Retired Persons. I think AARP is like the funniest name ever. It's like, are you sure it wasn't a character on Mork and Mindy? In any event, you've heard of them, right, Terry? I mean, I'm a member.

Terry Wilcox (3m 37s):
Yes, I've heard of them. They give you the discount stuff. They send you magazines. I've heard of AARP.

Dr. Bob Goldberg (3m 42s):
All that stuff. The other thing is that people don't know, this is a company that has about $2 billion in revenue and about 80% comes from insurance companies. If you've been watching TV the last couple of days, you know AARP has its own Part D Plan and its own Medicare Plan. That is the organization's biggest source of revenue.

Terry Wilcox (4m 8s):
Well, Dr. Bob, you and I have both written on this topic and whether or not AARP has a conflict-of- interest due to this relationship is something we're going to talk about today. I wrote an op-ed about this in late December, and to say it made a bit of a stir is an understatement, which is why we're having this conversation.

Dr. Bob Goldberg (4m 28s):
We did a white paper at CNPI, and thankfully, no one tried to beat me with an umbrella. It sounds like you got a lot more flack and I can't wait to hear about it.

Terry Wilcox (4m 40s):
What you need to know, folks, about Build Back Better, Health Insurers, and AARP, will be up shortly. Before we get to that, here's this week's healthcare news headlines

Robert Johnson (4m 56s):
In your health news, the second COVID Olympics is underway, this time in Beijing. China requires testing of all participants daily, and isolation if they test positive. The so-called closed-loop system, places severe restrictions on the hotels and venues where the games will take place. Despite these steps, more than 30 new cases of COVID-19 are being discovered every day. Also, the FDA has said to consider a COVID-19 vaccine, for kids younger than five-years-old, at a meeting on February, 15th. If approved by the FDA, and later by the CDC, kids as young as six-months-old would be eligible for a lower-dose regimen of the vaccine.

Robert Johnson (5m 38s):
The Biden Administration wants to know who benefits from tele-health, a practice that has gained widespread use during the pandemic. Some now argue, telemedicine is contributing to disparities, especially for people who have trouble speaking English. The White House has launched a series of round-table discussions to examine the value of pandemic-driven innovations. Finally today, President Biden's new Cancer Moonshot is audacious, according to his White House science adviser. The plan looks to be less ambitious than Biden's 2016 effort. It doesn't mention cures and doesn't call for new research money. Still, Eric Lander says the hard goal of cutting the cancer death-rate by half, makes the plan far more aggressive than its predecessor.

Robert Johnson (6m 27s):
That's your health news update for this week? I'm Robert Johnson.

Terry Wilcox (6m 31s):
Charla Penn, joins us shortly, to share her insights into the fate of Build Back Better, but before we turn to that conversation, let's look at the big news of the week. Some alarming news this week from Reuters. In 2021, there were over a hundred-thousand diabetes-related deaths in the United States. Deaths are now at record levels. 2021 was the second year in a row that deaths topped 100,000. It's clear that this is a growing epidemic that needs to be addressed with experts saying that it's time for Congress to take action to prevent the surge of Type II Diabetes. I have some thoughts on this, Bob, looking at it's 2020 and 2021. I don't think, since this pandemic, our lives have ever been more sedentary as a nation.

Terry Wilcox (7m 15s):
I'm not saying that's all of it. There are other things we need to address, but I'm saying it's interesting that it's come at the same time. It's in alignment with the pandemic, which started in early 2020.

Dr. Bob Goldberg (7m 30s):
Well, I think you're right. I think as we get more data about the interaction between undiagnosed, or people with COVID that did have diabetes and survived, that we may separate-out what the biological mechanism of the death was. All that is to say that, not only did we put our bodies on hold, but in terms of the ability to do follow-up treatment and testing and so on, it's had a consequence. The deaths from COVID have disrupted lives and our reaction to COVID has impacted the lives of people with chronic conditions, which diabetes is a pernicious one.

Terry Wilcox (8m 13s):
The Reuter's article tells us that 37-million Americans have diabetes and we have to take into account that that's Type II Diabetes. Only 1.6 million Americans, roughly, have Type I Diabetes, which is the type of diabetes that can't be controlled. If you have a better diet, or you exercise more, obviously that's totally insulin-dependent, but it's also a minuscule amount of the diabetes cases in this country. So I do think there is a lot to be said about preventative care, preventative messaging and language. I see it slowly changing. It's funny, I walked into Safeway the other day - Safeway is sort of one of those nondescript grocery stores. We have many fancy ones by us - Wegmans and Whole Foods, but I had to run into Safeway and they totally renovated it, and it looked like a Whole Foods.

Terry Wilcox (9m 2s):
It's like they were focusing on the healthy, they had made the floor wooden, so I think there is some attempt to change our mindset about how to eat and how to drink and all of that. They can tax everything to death, tax sodas and all that stuff. There are places to debate about that, but at the end of the day, we as Americans, have to take responsibility for our health where things like this are concerned.

Dr. Bob Goldberg (9m 26s):
Yes, I would love to dive into the data a little bit more to see if the mortality was people that were older, which would say a lot about the impact of COVID and not treating those people at higher-risk. That being said, along with cancer and other conditions, COVID has had more of an impact than the unfortunate number of people that have passed away from the disease itself.

Terry Wilcox (9m 55s):
Last up, before we get into my interview with Charla Penn about Build Back Better, let's get into our conversation on AARP, because there is a big connection between AARP and Build Back Better, that we'll be unmasking today. AARP offers, as we spoke about, more than just movie theater discounts or whatever, they also work with health insurers to create AARP-branded plans. Over 10-million seniors have plans with AARP's partnership with United Healthcare alone. That's a lot, and just for context, the money they get from United Healthcare, and they have different percentages - One for Medigap, one for Medicare Advantage, and I think they have just Part D Plans.

Terry Wilcox (10m 38s):
They have various plans, but they get a cut- back. Well, when you look at that, that's 45% of their revenue coming from United Healthcare alone. Now that's a big stake. To put that into context, when you're a nonprofit, there's a threshold. Certain companies won't fund you if the revenue is going to be more than 20% of what you bring in in a year, because that's considered starting to have sway over maybe what you're putting out. AARP is a nonprofit, therefore, I think this is a huge deal. They've come out demanding that we negotiate rates with Medicare, which is something obviously insurers love, and they've come out for various things, but what I pointed out, and bet that they didn't come out for, was for rebate pass-through, which would help more seniors than anything else.

Dr. Bob Goldberg (11m 34s):
They opposed any rebate pass-through. Remember last year, or two years ago, they ran a Stop Rx Greed campaign. They should continue it, but at least talk about themselves,

Terry Wilcox (11m 49s):
Right? I mean, they're part of the greed.

Dr. Bob Goldberg (11m 53s):
Yes, so that's one part they're perpetuating an unjust system, but it also turns out that they charge, in some states, a 5% royalty per member, per month of about 9 bucks. Now, for standalone insurance, for Medigap insurance, they charge 5%. United Healthcare's profit is 2%. The other thing is, they collect the premium payments for these programs and invest them in stocks and the securities market before they have to turn it over to United, so they make money on the arbitrage.

Terry Wilcox (12m 24s):
Wow. That's not a small chunk of change to invest for a few days.

Dr. Bob Goldberg (12m 32s):
No. So you said you got a lot of pushback from your op-ed. What happened?

Terry Wilcox (12m 37s):
Oh, there were a couple of letters. Honestly, I was curious - Whenever you write something, and it's going against a big, conglomerate, albatross, like AARP, I get somewhat leery of they're going to pull out - She's funded by pharma, but when I was weighing whether or not to do it, I was like, this is the right move. Seniors need to know this. So we got the usual suspects coming out, writing letters, and a few letters to the Editor. Oh, you did not reveal that Patients Rising has funding from pharma! and they listed our funders, or whatever. First of all, "It's not a paper's job to do that", was one of my responses, and the other thing is, you can link to Patients Rising and see who our funders are.

Terry Wilcox (13m 22s):
You can't go to AARP's website and look at - Even if you read their 990, you have to know what the royalties are coming from to know, because United Healthcare isn't necessarily listed in there. You just know it, if you're savvy enough to know where they're getting royalties, right? Of that magnitude, of course they're coming for United Healthcare. For the most part, seniors on the message boards ,and other things were like - Hey, what does this mean? Do they have our best interest at heart? The truth is, sometimes they do, but not always. You should question that when you're thinking about what they're telling you.

Dr. Bob Goldberg (14m 7s):
I know we were going to have the CEO of Mark Cuban's drug, I forget the name of it. It's the Mark Cuban Pharmacy. We were going to have the CEO on about a year-ago, but he pulled-out because they weren't ready. Mark Cuban is basically saying, I'm going to buy the drugs and I'm going to make a little bit of commission on this, but that's it. That's what AARP should be doing, if they're supposed to be protecting seniors, not playing the rebate game like the rest of these clowns. So, they can accuse Patients Rising of what? There's no conflict of interest.

Dr. Bob Goldberg (14m 47s):
You're transparent.

Terry Wilcox (14m 50s):
There's no conflict of interest. We think, in looking at this, how can any organization, that represents patients, say that they do not want all patients to have lower prices at the pharmacy counter and support rebate pass through, which would minimally, if at all, raise premiums. Meanwhile, premiums have been raised anyways. 14.5%, because of a drug they're not really going to cover, which we've talked about in earlier episodes. How can you say that you're for the consumer seniors, that you represent, when the one thing that would actually help them, you don't even stand down, you adamantly oppose.

Dr. Bob Goldberg (15m 27s):

Terry Wilcox (15m 28s):
We'll have links to both my AARP op-ed, and your piece, Dr. Bob, in the show notes. Now let's turn to the fate of Build Back Better, which is still hanging in the balance. It seems like the big package, as we know it, is dead, but there could be an effort to push-through smaller pieces of it. That includes many of the healthcare provisions we've been talking about. There are two big reasons as to why the original package is hitting a wall. One, West Virginia Senator, Joe Manchin, said on Tuesday, that the bill was "dead". In a split Senate, that is not a promising outlook for those looking to pass a bill. Then on Wednesday, it was announced that Senator Lujan, from New Mexico, was tragically hospitalized due to a stroke.

Terry Wilcox (16m 14s):
It's a horrible situation for him and his family, and we are thinking of them and sending our well-wishes during this challenging time and hoping for a speedy recovery for the Senator. The political realities of this incident are the current makeup of the Senate is 49 Democrats and 50 Republicans. This means that the healthcare provisions, as we know under Build Back Better, look like they won't pass. That doesn't mean there isn't a path forward. For patients, we're looking at the health policies on the horizon that could shape access to care, both the good and the bad. That's why I spoke this week with Charla Penn, of Winning Strategies Washington.

Terry Wilcox (16m 58s):
She's a health-policy expert, who has been following the issues closely, and she shares what patients might expect to see from Congress in the months ahead. So Charla, thank you for joining us today. We are here to talk about the future of Build Back Better and where we head from here in reconciliation. It looks like, from conversations which would be of interest to our audience, that a lot of the drug-pricing healthcare stuff may get through. I would love to get your thoughts on what you think it might look like.

Charla Penn (17m 32s):
As you know, this has been a very long process, and the provisions from Build Back Better, have been whittled-down repeatedly. One of the people that have been integral to some of these negotiations has been Joe Manchin. You had mentioned the prescription drug provisions, which is actually one that he says he has been supportive of, and continues to be supportive of. As Build Back Better comes into focus, whatever this new package will be, I'm pretty confident that prescription drug provisions, and probably some of the provisions having to do with the ACA and Medicaid, will be those that remain.

Terry Wilcox (18m 13s):
As far as the provisions, it looks like the major drug pricing provisions in Build Back Better are obviously some of the things that we're very supportive of. Out-of-pocket cap for insulin, $2,000 max out-of-pocket in Medicare Part D. Do we think those can get through?

Charla Penn (18m 38s):
Yes, absolutely. I think those are two of the most popular provisions, even politics aside. There's a lot of agreement that the caps for insulin are redesigned to make more affordable for beneficiaries will be included.

Terry Wilcox (18m 54s):
The questionable spaces, obviously Medicare Part B and D negotiation, and the ramifications of that on innovation. Obviously, that's pharma, and patients who are waiting for treatments, biggest concern in the rare disease community - all communities that are dependent on innovation, are concerned about that.

Charla Penn (19m 15s):
It has been narrowed, quite a bit, in terms of what it will encompass, in terms of the types of drugs, in which category, and what kind of manufacturers they're coming from. In general, the thought is that there is enough support for some form of negotiation to be included. I would be surprised if it fell out. The other part, that would be included in that, is the inflationary rebates in Part D, if manufacturer's price heads-up more than inflation in that current year. There would be rebate due back, not to the patients, but to Medicare Part D.

Terry Wilcox (19m 53s):
You said that it's been dialed-back on what they would focus on. Is it dialed-back on more rare medications that may be expensive, but maybe not as many people are using them? What are the provisions that have been rethought as far as what drugs they're going to put on this negotiation list?

Charla Penn (20m 15s):
First of all, the overall number has gone down. It will be ten, if there is a law that passes in 2025. They're going to be single-source, branded name drugs that don't have any competition on the market. They must have been on the market for 12 or 13-years, depending on whether they are generic or biosimilars. This would encompass some of the more rare disease drugs, so that could certainly be problematic. The small biotech firms, and their products, have been exempted, but I agree with you, it could present a challenge for some of those patients that are in the rare disease space trying to get some of these newer drugs.

Charla Penn (21m 2s):
However, it also needs to be one of the most used drugs, the most purchase drugs for Medicare. So, that is actually working in favor for some of the folks trying to get the rare disease drugs, because the volume is not there.

Terry Wilcox (21m 16s):
When you're talking about the negotiation with Medicare, and many people will come out and say this is going to lower prices for everyone, meaning in Commercial plans as well. If that's true, and it may be, I have no idea, can you explain what their thought is there?

Charla Penn (21m 39s):
Yes, yes, of course. The thought process would be, if there is a price negotiation, and there is money saved either by the government, or by individual insurance companies, those savings will be passed along in the form of premium discounts or copay discounts. There's no guarantee that that will happen. That being key to what happens to healthcare costs for everyone. There's really no mechanism to understand what's happening with that savings. If there's savings from negotiation, will the end users see it, and it's unclear.

Terry Wilcox (22m 17s):
You do believe that there's going to be some kind of reconciliation of this - Do you think?

Charla Penn (22m 23s):
Yes I do. Absolutely. There is a lot riding right now, not only in the administration, but as the Democrats are facing a midterm election, they need to have some results. They feel like this has been a long-time promise coming to address these sort of healthcare costs, particularly for prescription drugs. There will be a limited number of things passing, kind of before high-season for election comes along, after July. This will be part of those limited things that are passing in a special category because it is reconciliation.

Charla Penn (23m 7s):
They will need to meet that 50-vote threshold as opposed to 60.

Terry Wilcox (23m 14s):
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 council, 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 (23m 59s):
To Learn more, visit patientsrisingconcierge.org, or email us at askusanything@patientsrising.org. Up next, field correspondent, Kate Pecora, brings us her interview with Beth Waldron on non-medical switching and how it pits doctor's recommendations against insurance companies. Take a listen.

Kate Pecora (24m 10s):
Today, I'm speaking with Beth Waldron, an advocate within the pulmonary embolism and deep vein thrombosis, also known as the PE and DVT Community. Beth is going to share her story and talk a bit about the impact of nonmedical switching. Nice to talk with you, Beth.

Beth Waldron (24m 26s):
Thank you. Thanks for having me.

Kate Pecora (24m 27s):
So, let's start off with a bit about yourself and how your journey with deep vein thrombosis and pulmonary embolism has kind of taken root. I understand that you were in your mid-thirties when those symptoms began to develop and you've had a few experiences since then. Could you talk to me about those.

Beth Waldron (24m 51s):
Eighteen-years-ago, when I was 34-years-old, I developed deep vein thrombosis and pulmonary embolism. Those are blood clots in my legs and blood clots in my lungs. My blood clots were not initially diagnosed. My leg pain was attributed to a pulled muscle. My shortness of breath was thought to be a respiratory infection, for which I was prescribed antibiotics. It was only after a second, near-fatal pulmonary embolism episode, that I ended up with a rather long hospital stay, and I received the correct diagnosis. That was sort of my initial motivating factor for becoming an advocate related to blood clots.

Beth Waldron (25m 32s):
It's not normal, for someone in their thirties, to develop a blood clot out of the blue. So after some tests, I discovered that I have a blood clotting disorder, a thrombophilia. I'm at high-risk for developing a clot recurrence, and for that reason, I'm going to be on lifelong anticoagulation or blood thinning therapy. My father, interestingly enough, also had DVT and PE. Unfortunately, while he was on anticoagulation, he developed a massive internal bleed, which the doctors were unable to control and he died as a result of that bleed.

Beth Waldron (26m 14s):
I'm afraid I know all too well, both the risks of my clotting disorder, as well as the treatment. Since this time, I've tried to take, what were negative events in my life, and transform them and try to use them in a way that can do some good with the belief that it takes both an informed patient, and an informed healthcare professional, to really have the most optimal health outcome.

Kate Pecora (26m 39s):
One of your biggest advocacy efforts over the past year, has really been for this idea of non-medical switching, which has come up a couple of times when we've talked. I know you've had your own personal experience with this, as have about 150,000 other people in the country, who are living with this cardiovascular condition. Could you share a quick explainer of what non-medical switching is, what your story is with it, and what does it mean for patients?

Beth Waldron (27m 19s):
Non-medical switching is when a patient's insurance company forces them to change their medication for reasons that are not medical. Usually the reasons are related to cost. The insurance company, or the pharmacy benefit manager that the insurance company subcontracts with, gets a better deal from one pharmaceutical company over another. For example, in my case, I take a blood-thinning medication to prevent a clot recurrence. It's a process that many patients will find familiar. My doctor of 18-years, and I, revisit my treatment options regularly to ensure I'm on the appropriate drug therapy.

Beth Waldron (27m 60s):
We talk about the latest clinical trials. We discuss my medical history. We evaluate my risk for clotting. We evaluate my risk for bleeding, and then I share with him my personal preferences, and together we make a decision on what medication is going to be best for my unique needs. I have been stable on my current blood-thinning medication for the past eight years. My insurance has been the same throughout this entire time. I received a letter from my insurance company's pharmacy benefit manager, CVS Caremark, right before Thanksgiving. The medication I've been on for the past eight years is no longer going to be covered and I should ask my doctor about writing a new prescription for a different listed medication.

Beth Waldron (28m 48s):
That was it. The letter provided no phone number to call, if I had questions, and it did not mention an appeals process.

Kate Pecora (28m 53s):
So that leads me with a good number of questions about what happened next. So that was back in November. Were you forced to switch, is my first question. Did you end up having to switch to another medication that was now covered, or were you able to work with your doctor and the PBM to find a way to remain on the medication you were stable on?

Beth Waldron (29m 27s):
The first thing I did was I contacted my insurance company, and the PBM, to find out if there was an appeals process. I learned there is a way my doctor could file for an exemption. However, the approval criteria required that I first take, and fail the new medication, or have other clinical indications. If the exemption was approved, it would be at a higher copay tier, which would make it subject to co-insurance and deductible. In practical terms, it's only after a documented adverse event, on the new medication, that I would be able to continue going back to my current medication of eight years.

Beth Waldron (30m 8s):
My costs are going to rise by about $2,400 a year. From a practical standpoint, that's just not very practical. After consulting with my hematologist, we made the decision to take the path of least resistance and to switch medications. That's where I'm at right now.

Kate Pecora (30m 24s):
Have you had adverse events on it? Have you had any changes? I'm wondering what the biologics of the drugs are and are they that similar, that there truly isn't a difference between the two, or have you noticed any different side effects between the two medications?

Beth Waldron (30m 42s):
Well, I have only just recently picked-up my prescription for the new medication, so I don't have an experience on that yet. I think every patient is different and that is why all drug choices are needed. I think we don't know. I think all options need to be available. I personally, as a patient, would feel most comfortable with my doctor choosing my medication as opposed to my insurance company. I think the jury is still out. I haven't given it a try yet to see what's going to happen.

Kate Pecora (31m 10s):
I think the point that you most want to drive-home is the fact that this decision is being made by somebody who doesn't necessarily have knowledge of your specific medical needs. Who hasn't sat with you and examined you, and your medical history, the way that your doctor has. Because of that, and having them make those decisions on your behalf without consultation of your doctor, and making you fail at a product, just to prove that you can't take something, that is financially beneficial to them - It's a frustrating situation to be in. I do agree with you, that this should be a decision between you and your doctor.

Beth Waldron (31m 50s):
Absolutely. I trust my doctor. I've seen the same physician for 18-years, since right after my diagnosis. He knows me and has seen me through surgeries, through challenges, through everything. If he were to say, you're not doing well and we need to switch your medication, I would have no problem. To get a letter out-of-the-blue, where my insurance company wants to change me, for non-medical reasons - I think that i the key point - This has nothing to do with clinical indications. It's not that one is better, or worse than another, or they found a safety issue, this is simply because of contractual reasons.

Beth Waldron (32m 33s):
It's a non-medical reason. Given the class of drug this is, anticoagulants are the number one class of drugs for adverse events, I think it's a very risky thing to do. I think it's something that an expert physician needs to be managing blood thinners, and not the insurance company.

Kate Pecora (32m 49s):
Just from the little bit I read about you, and the work that you were doing before we decided to do this interview, it sounded you really like to educate other people, right? One of the ways you've done this over the years, is by volunteering with these different blood clot organizations. By actually co-founding a blood-clot education program at the University of North Carolina in Chapel Hill. That program is called Clot Connect. Could we talk about some of the passion-projects that you've been working on and hope to engage in over this next year?

Beth Waldron (33m 27s):
Oh, absolutely. I'm a big believer that it takes both an informed patient, and an informed healthcare professional, working together for us to have the most optimal health outcome. Knowledge is power, and so with that in mind, this year I'm going to continue to do what I've done for the past two decades. That i to collaborate with thrombosis organizations. Especially with Clot Connect at UNC, which is near and dear to my heart, to ensure that both patients, and clinicians, have access to the resources they need to be able to make the most informed decisions. I think that's especially important for those who live in rural and under-served areas.

Beth Waldron (34m 8s):
Health equity is a huge issue in our country and everyone needs access to the most up-to-date clinical information - both patients and physicians. Beyond that, I have a new goal this year. I want to make sure that third-parties don't come between those informed decisions that patients and doctors are making. I plan to put a great deal of energy, this year, towards advocating for legislative changes to protect patients from non-medical switching like what I've just experienced.

Dr. Bob Goldberg (34m 41s):
Thank you, Kate, as always. Now it's that time of the show where we get to hear from you, the members of our Patients Rising community, and here is this week's patient correspondent.

Beth Steckler (34m 54s):
My name is Beth Steckler. I am from North Dakota and my congressional district is at large. I have been a caregiver, and a care-partner, over the last 23-years. My husband, and my two children, have hereditary pancreatitis, or PRSS, which is a rare, genetic condition that impacts the pancreas. Even though my children's illness greatly impacted their education, it was a struggle to access educational supports and services for them. My daughter was never identified for an IEP. My son was, but it was not until high school. Due to the lack of proper identification through idea, and thus the lack of supports and services, my kids did not complete high school.

Beth Steckler (35m 38s):
It is so important that the state educational entities, districts, and schools, understand that chronic illness often is a disability which impacts student's education. Too often, if a student has a chronic illness, it is not seen by the school through a lens of disability. This must change in order to assure what happened to my kids, does not happen to others. All kids with chronic illness deserve an education.

Dr. Bob Goldberg (36m 12s):
We want to use this platform to elevate your voice and to bring light to the healthcare issues that concern you and everyone else in the chronic disease community. Why don't you become our next patient correspondent? All you have to do is send an email to Terry and me at podcasts@patientsrising.org. That is podcast@patientsrising.org.

Terry Wilcox (36m 30s):
We're so glad you joined us for today's episode. Let us know what you think of the show by leaving us a rating and a review. We would so appreciate it. You can also share the episode on social media.

Dr. Bob Goldberg (36m 41s):
Make sure to follow us on your favorite podcast, AARP. I mean a app!

Terry Wilcox (36m 41s):
We will be right back here again next Friday with another new episode on healthcare policies in Washington and across the state that affect you. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!