As a heated election season wraps up, Terry and Dr. Bob examine the latest results and what they mean for patients and federal healthcare policy. Dr. Madelaine Feldman discusses tactics used by pharmacy benefit managers (PBMs) to profit at the expense...
As a heated election season wraps up, Terry and Dr. Bob examine the latest results and what they mean for patients and federal healthcare policy. Dr. Madelaine Feldman discusses tactics used by pharmacy benefit managers (PBMs) to profit at the expense of patients. Also, Kate speaks with TikTok sensation Marc Winski about his stutter and the ways he’s embraced it on social media to educate others about the condition.
Madelaine Feldman, MD, FACR, President, Coalition of State Rheumatology Organizations
Dr. Madelaine Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans, LA. She is President of the Coalition of State Rheumatology Organizations, Chair of the Alliance for Safe Biologic Medicines, and past member of the American College of Rheumatology Insurance Subcommittee.
Dr. Feldman is a Clinical Assistant Professor of Medicine at the Tulane University School of Medicine, and lectures extensively to patients, physicians, regulators, and legislators, both locally and nationally, speaking before the House Energy and Commerce Committee Health Subcommittee in 2019. She has spoken and written on the drug supply chain, particularly the effect that formulary construction and utilization management tools have on pricing and access to drugs, related to availability and affordability.
Dr. Feldman received her medical degree from the Tulane University School of Medicine.
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
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Ronna Hauser (6s):
That means that if a pharmacy does have to close, there's a complete loss of access. The patient has to find another pharmacy to take care of their needs.
Matt Seiler (15s):
The hope is that the FTC will begin to see the impact, that a lot of the things that we see as independent pharmacies, are having on our pharmacies and the impact that it's having on consumers.
Terry Wilcox (28s):
Patients in rural areas of the country depend on independent community pharmacies, but pharmacists say that practices by drug middlemen, otherwise known as pharmacy benefit managers, will drive them out of business. Will the government step in and squash PBM monopolies? How this could play-out is up next. Welcome to The Patients Rising Podcast. I'm your host, Terry Wilcox, Executive Director of Patients Rising, a hundred-thousand members 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. In some podcasts news, after two-plus years of doing this show completely remote, Dr.
Terry Wilcox (1m 12s):
Bob and I, finally got to reconnect in person this week in DC, which was fantastic!
Dr. Bob Goldberg (1m 19s):
What was even more fantastic, Terry, is that you walked up to me and hugged me instead of slap me. I was really thrilled! I know you did not slap me, of course not.
Terry Wilcox (1m 30s):
I'm not a slapper. If I'm going to go for it, I'm just going to punch you!
Dr. Bob Goldberg (1m 36s):
Yeah, exactly. That would have been the right thing to do.
Terry Wilcox (1m 38s):
No, I'm a lover and not a hitter.
Dr. Bob Goldberg (1m 40s):
In any event, it was a good kickoff. There was a lot of good energy, and that just reminded me again, why we do the show. Which is not just to break-down the latest healthcare news, but to really create a community, and the opportunity for people with ideas, about how to fix a broken system and make it better. It was really, really a great event and we'll talk a little bit about it later in the show.
Terry Wilcox (2m 6s):
We definitely will, and I have to say, we really introduced some of our partners to a whole community of people they don't have direct access to. I think that was one of the biggest wins of the day is that we had Main Street in the room, and that was nice. As the debate over drug pricing, and high healthcare costs continues, we've been looking at alternative solutions that the government can take to make healthcare and prescription drugs more accessible, and more affordable, for patients. Today's focus is on the middleman of the drug supply chain that go largely unnoticed, but they play a big, big part in high cost to patients. They're called pharmacy benefit managers.
Terry Wilcox (2m 47s):
We've talked about them before otherwise known as PBMs.
Dr. Bob Goldberg (2m 50s):
Yes, we've talked a lot about PBMs in past episodes, but our angle today is a little different, since we're looking at how they impact community pharmacies. We found that community pharmacies are important, because in a rural area, that's the pharmacy you're going to go to. They play a very important role in managing the drug-drug interactions of patients and making sure that they're staying on medicines and responding well. Whether you are able to continue to use your local community pharmacy, is really up in the air, since PBM practices caused these pharmacies to actually lose money on every prescription.
Dr. Bob Goldberg (3m 33s):
Every prescription! If they go out of business, it'll be a major blow to prescription access. I think continuity of care for patients in rural and underserved communities.
Terry Wilcox (3m 43s):
That's right, Bob. Often pharmacists are the bearer of bad news to patients trying to get a drug, when really, they're also the victims to unfair insurance practices and PBM clawbacks that don't allow them to serve the patients they need to.
Dr. Bob Goldberg (3m 58s):
Today we get to hear from a group that represents these pharmacists. They'll talk about how these PBM actions hurt them and trickled-down to patients at the counter. Ronna Hauser is the Senior Vice -President of Policy and Pharmacy Affairs at the National Community Pharmacists Association or the NCPA. She gives the pharmacist perspective on how PBM clawbacks, like you mentioned Terry, are causing them to lose money. Also from NCPA, we're going to hear from Matt Seiler, Vice-President and General Counsel. He's going to talk about what the government can do, specifically the Federal Trade Commission, when it comes to investigating and shedding some transparency on the actions of PBMs.
Terry Wilcox (4m 45s):
Ultimately, the end-goal of all of this is better healthcare access and options for patients, especially those in rural and underserved areas of the country. We hear from both Ronna and Matthew up shortly, but first, this week's healthcare news headlines.
Robert Johnson (5m 3s):
In your Health News, medical bills are at the top of the list for people worried about inflation. A new Kaiser Family Foundation tracking poll, says 58% of those surveyed, are worried about paying for unexpected medical expenses. More than half say they've managed their medical bills by delaying or skipping appointments, while a third reported going without dental care. About 10% said they saved money by not filling a prescription, cutting pills in half, or using a cheaper over-the-counter drug, instead of the one recommended by their provider. A new study of Ivermectin, a drug once considered by many as an alternative treatment for COVID-19, reveals it does nothing to keep people out of the hospital.
Robert Johnson (5m 48s):
The conclusion comes in a study of 1300 people infected with the virus in Brazil. The results are published in The New England Journal of Medicine. The FDA, this week, approved a second booster dose of the COVID-19 vaccine for people 50 and older, but the Agency stopped short of saying people should get the extra shot. The decision was made without consultation of the Agency's panel of experts. The President got his shot on live TV to promote the news. Finally today, does drinking more water improve heart health? A new study in The European Heart Journal looks at the balance of salt and water in blood. It finds higher salt levels were linked to an increased risk of heart failure.
Robert Johnson (6m 29s):
Besides reducing salt intake, the study says women should drink six-to- eight cups of water a day, while men need eight-to-twelve cups of water. That's your Health News update for this week, I'm Robert Johnson.
Terry Wilcox (6m 47s):
Now let's start off today with a bit of health technology news. Google is in the early stages of rolling out a new feature that will allow patients to find, and schedule appointments, with local providers online. Yes, you can filter by doctors and facilities that are covered on your health plan. Simply navigating to your healthcare coverage can be a challenge, especially when it comes to tracking down in-network providers and practices. This is an interesting solution from Google that we'll continue to watch as it rolls out. I'll be honest with you, Bob, I have a pretty good ability to do that with Aetna, which is my provider. I can just sign-in and they'll tell me what doctors cover me.
Dr. Bob Goldberg (7m 28s):
Can you schedule appointments?
Terry Wilcox (7m 30s):
I don't think I can schedule appointments in there. I guess that's a plus. Is that the feature that's going to be...
Dr. Bob Goldberg (7m 38s):
I think so. I have to learn a little bit more about it, but I know there's a company called Zocdoc, which allows you to schedule appointments online and maybe this becomes more ubiquitous. I think it's an interesting feature for a lot of people that may not have access to Aetna or some other organizations. It also gives you the opportunity to look at out-of-network providers as well. What would be great is if you could also look at the prices of the hospitals, and everything else that you're going to be paying, and receiving care from.
Terry Wilcox (8m 17s):
I think that's going to be the next wave. We talked about this yesterday. I've talked about it a lot with David Blatt and the Free2Care folks. You know, transparency and pricing, people being able to look at a price and be like, "Okay, if I go here, I can do this thing for $2,000. If I go here, it's going to cost my insurance company, or my employer, in many cases, this amount of gazillion dollars and I'm still going to pay this copay for doing it there." I think that price transparency is the wave of the future for everything in healthcare. I think patients are getting savvier. I hope that's the case, because I think it will help control healthcare costs and we'll be able, as we discussed a lot yesterday, to focus-in, hone-in, and have the resources to pay for new innovations for more expensive treatments.
Terry Wilcox (9m 9s):
For things that people need, that right now can either fall through the cracks, or just simply be denied, because they're out of financial reach.
Dr. Bob Goldberg (9m 17s):
Terry Wilcox (9m 18s):
So Bob, let's transition to the focus of today's show, PBMs, which we talk about a lot here, by starting with a look at what is happening at the state level to chip-away at their power and help lower costs for patients. Several PBM bills, signed into law in Michigan, forced a lot of things now on PBM transparency. Filing transparency reports, including their profits. Prohibiting gag-clauses for pharmacists. Gag-clauses prevent pharmacists from notifying patients that out-of-pocket costs could be cheaper for medication than the insurance copay. Ban spread pricing. Now, shred-pricing is where they charge payers, like Medicare, more than what they sell the drug to the pharmacy for.
Terry Wilcox (10m 2s):
It's driving-up their profits. So these are all good things. What are your thoughts on this, Bob?
Dr. Bob Goldberg (10m 14s):
Well, especially the gag-clauses. Thank goodness I have good RX and some other apps, because in some cases, I can pay less out-of-pocket then I get charged by my drug benefit plan. Of course the spread pricing thing, to me, is still outrageous. It's the sick, subsidizing the healthy, because most of the rebates are made on the sick patients and then subsidizes everybody else. Good to see those actions taking place in Michigan, but as you and I know, progress on this is slow and steady. It's not obviously moving as fast as advocates would like, especially as pharmacists continue to be under-the-heel of PBM practices that hurt them and their patients.
Dr. Bob Goldberg (11m 2s):
We did interview Ronna and Matt, and started off with Ronna Hauser, who is the Senior VP of Policy and Pharmacy Affairs for The National Community Pharmacists Association, NCPA, on how PBM practices are making it difficult for community pharmacists to stay in business, and how that trickles down to the patients they serve.
Ronna Hauser (11m 21s):
You know, our members really are at the mercy of pharmacy benefit managers. Ninety-plus percent of prescriptions are covered by insurance. It's not a cash business anymore. It used to be a cash business and patients will pay out-of-pocket, but things have drastically changed over time, especially with the advent of Medicare Part D and employer insurance, clearly the Affordable Care Act. Things have changed, and more patients are insured, and more patients use their prescription drug coverage benefits. That means that our members have to negotiate contracts with pharmacy benefit managers, to be able to keep those covered lives and those patients in their pharmacy. If they don't want to lose that patient-base, and lose the care they provide to them, they really are at the mercy of these entities.
Ronna Hauser (12m 4s):
The PBMs have really, I'd say, consolidated to a great extent the last several years, to the point that you're at a point in time where three PBMs control up to almost 80% of the market. We have extraordinary pressure from these entities, on our member, to drive prices down. The contracts that our members see, and if they want to keep those patients in their pharmacies, they really are take-it or leave-it contracts with little, to zero, negotiation involved. Our members, and it's growing, the number of times that they are paid less to dispense a prescription, than what it costs them to purchase the drug.
Ronna Hauser (12m 47s):
Again, NCP's role is to ensure that there's a strong and viable network of independently-owned community pharmacies across the country. Therefore, one of our top priorities has been to reform these pharmacy benefit manager practices over time.
Terry Wilcox (12m 60s):
I have heard a lot about this. The community pharmacists have been up-in-arms for years. This has been a long time coming. It's good to see that it's finally getting some traction in the sense that it's getting more public recognition.
Dr. Bob Goldberg (13m 17s):
Right. I wouldn't say they have been fighting a losing battle, but they have not regained any ground that they need to survive, I think.
Terry Wilcox (13m 28s):
And look, we need our community pharmacists. People depend on them.
Dr. Bob Goldberg (13m 32s):
Terry Wilcox (13m 33s):
Many people prefer...When my mother-in-law, and my father-in-law lived in LA, they were surrounded by CVS and Walgreens. They continued to go to their community pharmacy, because they loved that pharmacist behind the counter. He never steered them wrong. He would always ask them questions. He knew them and that was important. Pharmacies kind of lost that, now that there's a Walgreens, CVS, or whatever, on every corner. What is the end-game, you think Bob, for the large PBMs who know they're doing this? They know they're not giving them enough to survive. They want to drive them out of business.
Dr. Bob Goldberg (14m 11s):
Right? If you're losing money on every prescription, there's a message telling you that we're only keeping you alive for as long as we need to. Again, just to reinforce the fact that half of Americans in rural areas, and in medically underserved communities, rely upon these community pharmacies. When they close-up, do you have to go to a chain pharmacy, which could be miles away, if you don't have transportation?
Terry Wilcox (14m 39s):
It can be many miles away in rural areas. Even my grandmother, who lived in a really small town in Arkansas, which had her community pharmacists. From where she lived, was like twenty miles away. You can imagine, CVS isn't in the twenty-mile place. CVS will be further away, you know, Jonesboro...
Dr. Bob Goldberg (14m 60s):
In a galaxy far, far away.
Terry Wilcox (15m 2s):
In a galaxy far, far away. Well pharmacists, or any business, can't survive if they're losing money on every prescription. That spells bad news for the patients in these communities, as we've discussed, so here's Ronna on what this means for patients.
Ronna Hauser (15m 17s):
That means that if a pharmacy does have to close, there's a complete loss of access. The patient has to find another pharmacy to take care of their needs. It means, a lot of times, that the large PBMs are steering patients into pharmacies that they have an ownership interest in. Whether it's a mail-order, a pharmacy, a specialty pharmacy, or a community retail pharmacy where there's an ownership interest, we see the PBM steering patients into those networks either by force, by mandate. In Part D for example, they'll structure preferred pharmacy networks where out-of-pocket costs for patients will be significantly less if they do receive their drugs through a preferred pharmacy. Sometimes for seniors on a tight budget, they're forced to make that change from their local, trusted pharmacy to a big-box retail pharmacy, where there's not that personal relationship, unfortunately.
Ronna Hauser (16m 6s):
Their out-of-pocket costs are lower, because the PBMs can structure benefits and that's how they want it.
Terry Wilcox (16m 17s):
It's such a racket.
Dr. Bob Goldberg (16m 21s):
Terry Wilcox (16m 21s):
I know we stated at the beginning that it's something like 80% of the market is covered by three PBMs. I think I heard that 97% of the market is covered by six PBMs.
Dr. Bob Goldberg (16m 33s):
Yeah, that's probably true. That's probably true.
Terry Wilcox (16m 36s):
It's like all those other little independent PBMs, that are outside of those six, are in that three percent.
Dr. Bob Goldberg (16m 45s):
That is crazy. Eighty percent is bad enough. When you have that large of a stake, obviously you have control over the prices. That's why they can force upon a retail pharmacy, a higher out-of-pocket costs, which to me is also outrageous. There are differences at the retail level, in the out-of-pocket costs, and price of things. That said, at the very least, you can look at those retail prices and compare them online. You can't do that with the PBMs. The community pharmacies are transparent about the costs of, not just the medicines, but everything else that they sell.
Terry Wilcox (17m 25s):
Because of that, Bob, there's been some movement from the FTC to investigate PBMs, which advocates have been clamoring for a while about this. Just this past February, when they went to vote on an investigation, it didn't go anywhere. It was deadlocked in a 2 to 2 vote, which is just ridiculous. Who's paying those guys off? It's like, come on!
Dr. Bob Goldberg (17m 51s):
Is somebody's kid being held hostage? It's like what's going on? No! No, we don't want to learn more about PBMs and...
Terry Wilcox (18m 2s):
We don't want to learn any more about corruption. Oh my Gosh, no.
Dr. Bob Goldberg (18m 6s):
As you can imagine, there was a lot of back-and-forth as to why the Federal Trade Commission, the FTC, couldn't decide whether to ask more questions. Here is Matt's take on the vote. Again, he's the VP and General Counsel of the NCPA.
Matt Seiler (18m 25s):
The FTC, and I think going into that vote, there was some alignment. What we understand happened was, there were changes the last couple of days, maybe even in the last hours, that were made to the study that was proposed. Those changes didn't really give the commissioners time to review what those changes were, the impact that it would have on staff, and different resources. I think I'm cautiously optimistic that the FTC will undertake a study of PBMs. I felt like they were close the last time, and frankly, the Republican Commissioner's comments provided the commission leadership, a really good roadmap on how to get there. There's bipartisan support for a study.
Matt Seiler (19m 5s):
I do think we will get to a study.
Dr. Bob Goldberg (19m 10s):
Well, I'll see it when I believe it. I hope Matt's right. He did tell us a little bit about what this study, if it's commissioned, would hopefully investigate. That includes how PBMs can force patients to make changes based on what is, and isn't, on the formulary. God knows we have lots of different examples from our patient correspondents about that, and where, and why, consumers are overpaying for prescriptions that they need.
Matt Seiler (19m 35s):
The hope is that the FTC will begin to see the impact, that a lot of the things that we see as independent pharmacies, are having on our pharmacies, and the impact that is having on consumers. The patient steering question, I think that will give them greater insight into what is actually happening, with respect to patients steering, and how does that impact the lives of consumers. Do they get forced into a mail-order when they have medications that require close management with a pharmacist? They'll look at things like adhesion contracts. Are these contracts something that can actually be negotiated between the PBMs and the pharmacies and what does that mean.
Matt Seiler (20m 20s):
Could they do rulemaking around those contracts to put everybody on a level playing field? They could also use their UDaB authority to investigate unfair and deceptive trade practices related to these post point-of-sale claw-backs that happen, and the consumer overpayment with co-insurances, copays, or even both. One of the things we see that negatively impacts consumers is that the prices, at the point- of-sale, are being inflated by the PBMs to enable claw-backs after the point-of-sale. After the patient gets their medication from the counter. It also has a negative impact on the consumer themselves, because the consumer's co-insurance oftentimes is based on that inflated price.
Matt Seiler (21m 4s):
The insured is actually paying a higher copay, in some cases, than what they need to. Co-insurance, I think, is the proper word.
Dr. Bob Goldberg (21m 12s):
Just hearing that, just what a racket!
Terry Wilcox (21m 16s):
No, it's a total racket, and patients are somewhat unaware of this, except for when it really does affect them. They're suddenly forced into mail-order. We've had stories of some patients, who've been forced into mail-order situations where their medications actually had to be temperature-controlled in some way. They did lose their effectiveness in that process, because they weren't taking care with those, but they didn't have a choice. It wasn't covered if they didn't do it that way. I think there's a real racket where they create these things to their benefit, and they don't really think about the patients they're serving, which is unfortunate.
Dr. Bob Goldberg (21m 53s):
Again, the most effective tool that we can give patients right now, to fight back, is price transparency, which we talked about earlier. That was one of the components of the Michigan State laws, that were recently passed, and here's Ronna on how she thinks that could be a game changer.
Ronna Hauser (22m 9s):
I think, oftentimes, it has put the pharmacist in an untenable position of having to be an insurance agent, and try to explain benefits to patients at the pharmacy counter, which is just a very unfair role to put pharmacists in. It's clearly the PBMs that are setting prices up-and-down the chain. They're setting how much the pharmacy gets paid. A pharmacy that's competing with one of their own pharmacies, they're setting the price that the consumer pays at the pharmacy counter. They're setting what drugs the patient can take, so it puts the pharmacist in a very unfortunate situation of having to explain all this to the patient. As Matt was discussing earlier, there's many PBM tactics that inflate those out-of-pocket costs at the pharmacy counter. It's very difficult for pharmacists to explain that. Unfortunately, there could have been a lower-cost option for that patient, but because of their insurance benefit, and because of the PBM, they're having to pay more out-of-pocket than they should.
Ronna Hauser (22m 55s):
We think that there needs to be a lot of reforms that can lead to a day where patients are truly paying the lowest cost for the drug that's going to benefit them most, not some drugs that the PBM got the highest rebate on. Lots of reforms still needed.
Terry Wilcox (23m 14s):
We've talked about that a lot.
Dr. Bob Goldberg (23m 16s):
Yes we have.
Terry Wilcox (23m 17s):
We've talked about that a lot this week, and in recent months, and it's interesting to hear some people are just like, "Nah, whatever, whatever, whatever with the rebates.", and we're like, "Pass the rebates on." I don't know, I'm still with pass the savings onto the patient at the pharmacy counter, whatever it may be. If rebates stay, or rebates go, whatever the case may be with how rebates pan-out for the future of the supply chain, they're there now, but we should be creating savings for the patient. Patients shouldn't be charged on list-price, just period. They just shouldn't be.
Dr. Bob Goldberg (23m 51s):
Terry Wilcox (23m 51s):
It's just stupid and I don't know why that simple change just isn't. It seems to me, if I was running a company like that, it would be the ethical thing to do. It would just be the right thing to do for people who are struggling.
Dr. Bob Goldberg (24m 9s):
Terry Wilcox (24m 9s):
I know, that's why I'm not running a PBM.
Dr. Bob Goldberg (24m 12s):
You're asking too much.
Terry Wilcox (24m 15s):
They would fire me.
Dr. Bob Goldberg (24m 15s):
Yeah, right. In the meantime, what can our listeners do?
Terry Wilcox (24m 17s):
Ronna also gave us some advice, to patients, on how to try and get the best price you can for medicine, even if things are stacked against them. So here's tips from her.
Ronna Hauser (24m 27s):
I think patients can be savvy shoppers. I think they need to be savvy shoppers with their prescription drugs, just like with other things they're purchasing. I think it's best to work with your local, trusted, independent pharmacist, and ask them what they can do to help you lower your drug prices. There's sometimes things that the pharmacist have learned, over time, that can help lower out-of-pocket drug costs, so ask the pharmacist how you can lower drug costs. Sometimes you do get lower costs not using your insurance. Several years ago, there was a law passed that banned gag-clauses in PBM contracts. There used to be language, in PBM contracts, that basically prohibited pharmacists from discussing options for patients that were off insurance.
Ronna Hauser (25m 7s):
Since we've seen gag-clause bans, our members are more free to talk to their patients about options for payment outside of their drug benefits. That's just one thing I can think of. A tip to offer patients. Always talk to your local pharmacist about other options that may best suit your individual situation.
Terry Wilcox (25m 27s):
That's always a smart thing to do. I know that we've done that. Actually, I've been able to get medications for my son cheaper just by asking that question at the pharmacy counter. They'll punch something in, and they'll do something else, and my copay would have been, I think in this particular instance was going to be like fifty bucks. He's like, "You can get it for $28.94." I was like, "We'll take the twenty-two bucks."
Dr. Bob Goldberg (25m 58s):
Okay. Yeah, yeah. There's always these coupons and versions. There's All Care and Good RX, and if you speak to your pharmacist, a lot of times they do come-up with a solution that can at least mitigate the high out-of-pocket costs, if not eliminate them.
Terry Wilcox (26m 19s):
Well, if you want to make your voice heard on this issue, the FTC comment-period is still ongoing. We're going to be commenting here at Patients Rising. Find out how you can submit a comment by heading to the episode show notes. 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.
Terry Wilcox (27m 5s):
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. To learn more, visit patientsrisingconcierge.org, or email us at firstname.lastname@example.org. Up next, field correspondent, Kate Pecora, continues her interview series where she speaks with caregivers, patients, and chronic disease advocates. April 1st marks the start of World Autism Month. She brings us her conversation with Mason, who lives with both autism, and Crohn's disease. He shares how he advocates for both communities in today's conversation. Take a listen.
Kate Pecora (27m 44s):
Today we're speaking with Mason. He's an advocate in the UK for Crohn's and autism awareness. April is Autism Awareness Month, so we're glad to spend some time with him talking about his advocacy work and also his own podcast. Mason, could you tell us a bit about yourself and your advocacy journey.
Mason (28m 4s):
Hi, I'm Mason and I have Crohn's disease and autism. I was diagnosed with Crohn's in 2017 and I was diagnosed with autism in 2009. They're two completely different things, but why I've raised awareness is because I enjoy it. I'm passionate about it. I wasn't confident when I was younger, but now since I've gotten older, I am. Part of what I do is, I have my own podcast as well. I speak to different people, which helps, especially with mental health too. Raising awareness, and helping other people raise awareness, is really passionate and really important to me.
Kate Pecora (28m 38s):
All right, so let's talk about your podcast, which is called Crohn's and Autism Awareness Advocate. How does this play a role in the work that you do for both Crohn's and autism?
Mason (28m 48s):
So, some things I do is I reach out to different people. There are some people that reach out to me. For example, other than having a podcast, I like to do different things. In the past, I've done a confidence building program for young people. That does help them raise their confidence. I would want them to have more confidence, than when I was younger, because I think being confident about something that you want to raise awareness about, is really important. Because if I didn't have confidence, I wouldn't be on a podcast or have my own podcast. That's something I'm passionate about when talking about different things. Going to events as well, is something that really helps, and late last year, I did a little block-talk about autism and Crohn's.
Mason (29m 36s):
There are so many different ways that I can raise awareness and if other people to do that as well.
Kate Pecora (29m 42s):
For our listeners who might not be familiar with Crohn's, could you describe how it affects your everyday life?
Mason (29m 46s):
What I want them to know is that it's different for everyone. You can't see it. As much as it can be visible, it's not if you don't know what it is, because if you don't know what it is, it's hard, because when I was diagnosed, I didn't know about Crohn's. It was learning. I had to learn about it. What I want someone to know is that it impacts everyone differently. For example, for me, unfortunately I've got one of the worst forms of Crohn's called pachypans. So there's different types. For me, it will affect from my mouth down to my bum area, so it affects differently. If I have a flare, which means that you're bowels are inflamed. It's all red inside. Basically, what I want someone to know, is don't judge someone, because not everyone likes to raise awareness or talk about their story to other people.
Mason (30m 36s):
It's just that personally, I like to do that. I suppose it's a hobby for me. It is for many people, that you talk about something that you really want to talk about, to spread that awareness. Just don't judge and everything is just not physical.
Kate Pecora (30m 51s):
Since World Autism month starts in April, I wanted to talk to you about autism advocacy and your own personal experiences. Is there anything that you would want people to know, or maybe better understand, about autism?
Mason (31m 4s):
I would like people to know, one major thing I'd like people to know, is that it's not an illness, because an illness is something that is not curable. Although autism isn't curable, it's something that can affect your day-to-day life. Everyone has it differently. What we want people to know is, embrace having autism. It's not a disease. It's something that people may find harder and some may find easier. It's like, for example, being autistic myself, and talk to different people about it, is that if you really engage with your hobby.
Mason (31m 44s):
For example, if you like a particular show, like me for example, I quite into Dr. House, so I will talk about that all day long. All day long I would tell people. That's one of the things I'm passionate about. I'll want to tell people that I have autism, that it's okay to talk about it, and it's okay not to talk about it if you don't want to.
Kate Pecora (32m 6s):
So you live with both autism and Crohn's disease. I want to wrap-up by asking how you speak to both of these on your podcast and how it kind of intertwines with some of the other topics you might talk about, like mental health.
Mason (32m 19s):
With my podcast, I actually started my podcast in 2020, kind of when the pandemic started and the lock-down. I was bored and I personally didn't know what a podcast was at the start. I was talking to myself, and then I decided, just hang-on a minute. Would it be better if I had guests on there? Then the name has changed quite a lot of the times. I've got a name where it's currently called, Crohn's & Autism Awareness Advocate, which I think goes really well. Not too long ago, actually, I updated the logo. In the middle, it has a purple ribbon, which stands for Crohn's, and it has the little jigsaw pieces that are for representing autism.
Mason (33m 8s):
On it now, I have on the left-hand side, chronic illnesses, because now I speak to different people that have different chronic illnesses, which I find really interesting. The right-hand side, the logo is mental health. I speak to different people about mental health, because mental health can affect everything really. Mental health with autism, mental health with Crohn's, it is really impactful on people and what they talk about. I talk about all those different kinds of topics. It kind of keeps me going, I suppose, because with my having Crohn's disease, that makes me, and the medication I take, that cancer patients take, that makes me extremely clinically vulnerable. Having some face-to-face with people on my podcast is really engaging and it keeps me going.
Mason (33m 49s):
Even now, as the pandemic is still going on and on, and different events going on in the world, I feel like a podcast is a great way to engage people and meet new people even if they're all the way over in Australia, or something like that, and spread to different people across the world. I think it's quite amazing, that on the podcast, you can do that. Just have a conversation for an hour or more with someone about a topic they're passionate about. Which they want to spread awareness, and they have the opportunity to share their story, as well as relating to them.
Dr. Bob Goldberg (34m 29s):
Thank you Kate and thank you Mason. Now we get to hear from you, the members of our Patients Rising community. Here's this week's patient correspondent Alyssa Komar, a patient advocate who shares how PBMs affect access to care.
Alyssa Komar (34m 46s):
My name is Alyssa Komar, and I live with rheumatoid arthritis, Sjogren's and Myasthenia gravis. I've been a patient advocate for many years and my professional background is in healthcare administration. Since 2017, perhaps nothing has affected my chronic illness journey quite like pharmacy benefit manager "gotchas". Those terrible, impossible-to-manage and plan-for surprises, that PBMs are allowed to put upon the patients they're supposed to serve. Some years ago, I coined the term "insurance injury" and insurance injury is any occurrence where my care, or the care of my family, is negatively affected due to sketchy insurance and PBM behaviors. Things like intentional delays from prior-authorization policies, or PBMs making money-grabs, on patient-assist funds that are intended to help me and my family.
Alyssa Komar (35m 32s):
Wouldn't it be helpful if we could track this information and truly learn the scope of the problem upon patient? How often it happens and how deeply it affects our care. I wanted to introduce this term, and encourage all of the listeners here, as you fight-back for your care and your family's care, keep track of how often the insurance injuries happen for your family and exactly what the effect is upon your care.
Dr. Bob Goldberg (36m 4s):
Thank you, Alyssa. Do you have a healthcare story you'd like to share? Become our next patient correspondent and make your voice heard. All you have to do is send an email to Terry and me at email@example.com.
Terry Wilcox (36m 17s):
Thank you for tuning into today's episode. We'd really appreciate it if you could spare a few seconds to leave us a rating and a review. This helps us grow the show and reach more members of the chronic disease community.
Dr. Bob Goldberg (36m 24s):
Please follow the podcast on your favorite podcast app, or just ask Alexa to play the Patient's Rising Podcast for you.
Terry Wilcox (36m 24s):
Join us here again next Friday for another new episode. Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox - Stay healthy!