April 8, 2022

The Real Costs of Diabetes + Alzheimer’s

The Real Costs of Diabetes + Alzheimer’s

The access and affordability challenges that face patients with Alzheimer’s and diabetes are not uncommon. In fact, they impact all patients within the chronic disease community. Hosts Terry and Dr. Bob explore underlying issues throughout the...

The access and affordability challenges that face patients with Alzheimer’s and diabetes are not uncommon. In fact, they impact all patients within the chronic disease community. Hosts Terry and Dr. Bob explore underlying issues throughout the healthcare supply chain that have hindered patient access, including rebates.

This follows the House of Representatives passing the Affordable Insulin Now Act, which would cap insulin costs at $35 a month. George Huntley, CEO of the Diabetes Leadership Council, shares what this would mean for patients, and patient correspondent CJ Walker explains how the bill fails patients who are uninsured. 

And in the wake of CMS' decision to restrict coverage of Alzheimer’s treatments to those in clinical trials, we air a conversation with Jim and Geri Taylor, who founded the Voices of Alzheimer's organization after Geri was diagnosed with Alzheimer's in 2012. 


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


George Huntley, CEO of Diabetes Leadership Council 

Geri Taylor, Founder of Memory Advocate Peers, Patient advocate

Jim Taylor, Founder of Memory Advocate Peers, Patient advocate

CJ Walker, Patient Correspondent 


Diabetes Leadership Council

Who We Are | Memory Advocate Peers

House Passes Bill to Limit Cost of Insulin to $35 a Month - The New York Times

CMS Proposes Medicare Coverage Policy for Monoclonal Antibodies Directed Against Amyloid for the Treatment of Alzheimer's Disease

More than $300 Billion in Health Care Spending Goes to Middlemen. We Need Accountability.

HRSA calls for Boehringer Ingelheim to be fined over 340B contract pharmacy restrictions | Fierce Healthcare

Insulin Copay Cap Passes House Hurdle, But Senate Looks for a Broader Bill | Kaiser Health News

Walmart, Amazon up the ante in pharmacy | Supermarket News

Medicare finalizes its restrictions on new Alzheimer's drug, despite pressure from drugmakers

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Jim Taylor (6s):
Participation in clinical trials is a crisis in this country. Less than one percent of people with Alzheimer's participate.

George Huntley (14s):
Even though getting insulin capped is only one drug. The problem with the broken health system, specifically with the pharmacy benefit, goes far beyond just the drug of insulin.

Terry Wilcox (26s):
Access to affordable medicines is out of reach for many patients. Today, we hear from members of the diabetes and Alzheimer's communities. What does their fight for accessible healthcare mean for millions of chronic disease patients? That's 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, who has been listening to the K-pop band BTS on repeat following the Grammys.

Dr. Bob Goldberg (1m 3s):
Oh, come on!

Terry Wilcox (1m 4s):
Have you really, Bob? He's Dr. Bob Goldberg, Co-Founder for The Center for Medicine in the Public Interest. Hi Bob!

Dr. Bob Goldberg (1m 10s):
No, no, no, no, no, no. I was listening to Tyler The Creator, alright? J. Cole, Nas, Ye, those are my people, so let's lay off this bubble-gum stuff. I'm hardcore, baby!

Terry Wilcox (1m 26s):
You are hardcore. I mean, I'm just going to say, and I'm going to out myself over here, I have no idea what happened.

Dr. Bob Goldberg (1m 32s):
Neither did I, of course.

Terry Wilcox (1m 35s):
I don't have any idea what goes on there. I'm like a Darius Rucker, Willie Nelson chick. I like lots of other things, and I like lots of music, but I am definitely a country music fan, being from Texas. It is my first music language, as they say.

Dr. Bob Goldberg (1m 54s):
Anyway, so our podcast. We do have lots to cover today, Terry, particularly on how proposed bills and regulations will help, or hurt, access to care for the millions of Americans who live with a chronic illness.

Terry Wilcox (2m 7s):
Look, Bob, you can't have access to care if it's not affordable. One of the biggest culprits of this is insulin. Something that lawmakers have grappled with solving for years.

Dr. Bob Goldberg (2m 18s):
Now the House has recently passed a bill that would cap the out-of-pocket cost of insulin at $35, but it faces an uphill battle to get through the Senate. This insulin issue sheds light on many of the other drug access and affordability hurdles that patients face.

Terry Wilcox (2m 37s):
That's right. To help put the insulin debate in context with the broken healthcare system, as a whole, I spoke this week with George Huntley. He's the CEO of The Diabetes Leadership Council. He lives with Type 1 diabetes and he shared what listeners need to know about insulin, and broader drug pricing reforms, that will help all patients struggling to afford care. We are also going to hear from Alzheimer's advocates, and husband and wife duo, Jim and Geri Taylor. Geri was diagnosed with Alzheimer's disease in 2012, setting them off on their advocacy journey, which they continue today. We hear their conversation shortly, but first this week's Healthcare News headlines.

Robert Johnson (3m 22s):
In your Health News, the FDA's panel of experts wasn't consulted before the announcement that a second COVID-19 booster would be available to people 50-and-older, but the group still discussed it this week. Among the comments, a CDC representative wanted to know about the booster strategy going forward, asking what is enough? Others said new strains could continue to evolve every two-to-10 years. Despite the quick approval of the second COVID booster, a new STAT-Harris poll says six-in-ten Americans have decided they will get another shot if it's recommended. Another twenty-two percent say it depends on the severity of a new variant or a local surge in virus cases.

Robert Johnson (4m 3s):
The remaining eighteen percent surveyed say they have no plans to get the booster. Blood clots remain a concern for people who have had a COVID infection. A study of health records in Sweden confirms the danger and a possible timeline. Up to three months for clots in the leg, up to six months for clots in the lung, and up to two months for bleeding problems. Finally, veterans with video tablets, connecting them to mental health treatment and services, appear to suffer less suicidal behavior, according to a study in the Journal of the American Medical Associations Network Open. The federal Veterans Administration has given nearly a half-million tablets to veterans who live in rural areas.

Robert Johnson (4m 58s):
That's your health news update for this week, I'm Robert Johnson.

Terry Wilcox (5m 3s):
Okay, Bob.

Dr. Bob Goldberg (5m 3s):

Terry Wilcox (5m 4s):
Today we're starting out our conversation with Tom Brady. Yes, that Tom Brady. The one that's in your head, but don't worry, there's a connection to rebates. So just follow me on this for a bit.

Dr. Bob Goldberg (5m 23s):

Terry Wilcox (5m 25s):
In 2021, the entire pharmaceutical industry paid $350 billion in rebates and discounts to middlemen like pharmacy benefit managers. $350 billion! That is more money than the NFL has earned over the past 22-years. The equivalent of Tom Brady's entire career, just to put that into context. There's a great piece on this that we'll link to in the show notes, by Adam Gluck, of Sanofi, and no, nobody's paying us to talk about this. We found this in the news like everybody else. Yes, Sanofi is a sponsor of Patients Rising and Patients Rising Now. We are covering this of our own-accord. I say these things every time I mention a pharma company.

Terry Wilcox (6m 5s):
We're talking about it today with our focus on access and affordability, and despite the billions of dollars in payments, many drugs are still not affordable to patients. So where's the money going if it's not going to patients? Well, we can look at United Healthcare's earnings report. We can look at the fact that United Healthcare and CVS are in the top ten Fortune companies in the country. It's a very interesting piece. I've had this conversation with Popovian. These numbers to me are not new. This was just put out, I think, on LinkedIn, and that's where I saw it. I want to talk about this piece.

Terry Wilcox (6m 47s):
The amount of rebates is staggering on an annual basis. It's staggering. So where is it going? He goes into some of Sanofi's bottom-line. We'll link to it in the show notes if anybody wants to read it, but this is true in insulin. Their price has been going up, up, up, up, up, up, up, but the net price that they're earning from each vial of insulin, insulin pen, or whatever, is going down. The trend is going down. So there's this wider and wider gap of rebates, fees, and all this other kind of nonsense.

Dr. Bob Goldberg (7m 20s):
Terry, here's another factoid for everybody. The estimates are that in 2021, we spent nearly $600 billion list price. That means that over half of the prescription drug spending in this country is going to middlemen, who in-turn, pass the money around to everybody except the sickest people, who's use of these medicines are generating the rebates. P.S., this is sort of regarding the Alzheimer's issue, don't buy the rhetoric that this is making medicines affordable, because there's something else that goes on when they're trying to "lower"

Dr. Bob Goldberg (8m 3s):
the price of drugs and that's lower access. For example, and we've talked about this a number of times, CMS, what they want to do, is only cover it for people in clinical trials and in certain kind of clinical trials. Not only would that be a burden on caregivers who have to schlep people to these trial sites, because a lot of these are not remote trials, but secondly, setting aside the fact that it's immoral to do that, but this is going to reinforce, devise an access to care in rural communities, and African-Americans where the incidents of Alzheimer's is growing faster, regardless of income, regardless of neighborhood.

Dr. Bob Goldberg (8m 50s):
How can CMS justify this kind of restriction is beyond me, Terry, and it's going to cover 500 people under their nonsensical approach. Just to unpack it further, there's no way that your Medicare Part B rates should jump $50-60 a month to cover a drug that will be used by a handful of people initially. By the way, will probably save money for Medicare down the road. Aduhelm became a poster-child for every stupid, venal, ICER-driven effort to undermine access to care. Let me just add another P.S. In the ICER discussions, one of the reasons that they said we shouldn't have access to this medicine is, people will live longer, and it will cost caregivers more so...

Terry Wilcox (9m 38s):
Well, I also think one of the things that we want to point-out to our audience here is, look, whatever side you fall on - There is enough data, not enough data - The role of the FDA, they did their job. They initially came out and said Aduhelm should be available to a wide variety of Alzheimer's patients. Then they stepped back a little bit and said, "Okay, let's look at this study piece. It should be for this population." and then they sort of dialed-back and said, "Okay, we think this population, this newly diagnosed or early diagnosed." and then that's that. They do have to do a confirmatory trial, which Biogen has to submit. I think they just did. They just submitted their envision trial to the FDA.

Terry Wilcox (10m 18s):
The point of this long rant here is, why is CMS trying to create the same thing? CMS is trying to create its own FDA lane and that's where I think they're out-of-bounds.

Dr. Bob Goldberg (10m 34s):
Yeah, absolutely.

Terry Wilcox (10m 34s):
Also in big health policy news, the House has passed the Affordable Insulin Now Act, which proposes a $35 monthly cap on insulin. I spoke with George Huntley, CEO of The Diabetes Leadership Council. He gave his perspective on the proposed legislation, and how it's a good first-step, but it doesn't go far enough to correct the root issues within the drug supply chain system.

George Huntley (10m 59s):
So those bills are wonderful and we strongly support the effort to put a national cap on insulin. The beauty of the bills that were in the Build Back Better Act, and the ones that are moving forward as standalone right now, are that it caps insulin at $35 in Medicare, as well as employer-based ERISA plans. That, to me, was the Holy Grail, because half the country is covered under employer based plans. Just capping Medicare doesn't help enough people. If you get either ERISA side of it done, then that's basically the commercial plans out there.

George Huntley (11m 40s):
We've been going state-by-state trying to pass insulin caps, and we think we've got it in a couple dozen states right now, at varying levels. Some are a hundred dollars. Some are as low as $20. $35 is obviously much better. At the state level, they can only impact state plans, small employers that are within the state exchanges, and things like that. This national-level federal bill, it's really promising. We certainly hope that something gets done. I know there's a lot of politics going on about whether they're going to give a win to somebody before the midterms, but we do hope they can put some politics aside and help a population that desperately needs it.

George Huntley (12m 24s):
Even though getting insulin capped, is only one drug. The problem with the broken health system, specifically with the pharmacy benefit, goes far beyond just the drug of insulin.

Terry Wilcox (12m 39s):
Just as a recap for everyone. We've talked about ERISA quite a bit on this show and ERISA is the Employee Retirement Income Securities Act of 1974. It's where all the protections are for employer- sponsored health plans, which is many health plans in this country, almost 50%. I just wanted to clarify what he was talking about. When he's talking about this cap, these standalone bills are really covering a much broader base than just Medicare. However, as an inside baseball analogy, I'm sure the Senate is rolling their eyes that the House passed this.

Dr. Bob Goldberg (13m 16s):
Yes, right.

Terry Wilcox (13m 17s):
What are you doing? Like this bill is not going to pass as is over here, so have fun.

Dr. Bob Goldberg (13m 24s):
Yeah. Knock yourselves out.

Terry Wilcox (13m 26s):
Knock yourself out. It's hilarious, because it is all politics. Everything is about politics this year, so you have to look at everything through that lens. It does look like, not necessarily Rafael Warnock's bill, isn't the one getting discussed in the Senate. There is some talk around the one that Susan Collins co-sponsored. We'll see. It's going to be tough over there too, to get sixty votes, because Republican's big issue with it isn't that they don't want to have an insulin cap. They want it paid for. Basically, on the House side, if you look at how they're going to pay for the $35 insulin cap, is by not implementing the rebate rule. They're going to kick that down. They're going to just keep that rule on the books so they can use the money to play with the pretend money and they're going to pay for things with it.

Terry Wilcox (14m 15s):
The Republicans don't like that sort of monkey math. We'll see how it all pans out. George also talked about how the rebate system has contributed to the high-cost of insulin and other medications. Here's George again.

George Huntley (14m 31s):
The other thing that they've done, that is illustrative of how messed-up the rebate system is, is they've come out with generics of their own drug. Two of the insulin manufacturers came out with generics of their own insulin. It's going through the same manufacturing plant and the same drug is going into a vile. They're just putting a different label on it. One's a generic and one is the brand. The brand is retailing at $335 a vial, roughly, and the generic is half, well-less than half that, I think. I haven't looked at it recently, but I think they've even lower it even. They did that so that they could offer a lower-cost drug. It's still too much. At half, $330 is still too high.

George Huntley (15m 11s):
I know that that number is driving down even further, but the illustrated pieces, they actually had to create a generic of their own drug in order to put something on the market that people could get at a lower price. There are now biosimilars of insulin hitting the market, and notably one of the biosimilars that hit the market, they were saying, "We're not going to play the rebate game. We're going to come in just at a low-cost so people can afford it." and they had to come-up with two versions of their own biosimilar. One with a rebate and a brand name, and one without, that could be sold at a lower price. The reason they had to do that is they couldn't get on any of the commercial insurance formularies, because the PBMs would only allow a drug on it, that had a high rebate, so they can make money, because that's how the PBMs make their money.

Terry Wilcox (16m 5s):
I hear stuff like this and then people want to tell me that list prices are pharma's fault - All pharma's fault! They've got to lower their list prices. Well, David Mitchell, what do you say to this? What do you say to the lower list prices here where we've had to create two drugs? What do you say that?

Dr. Bob Goldberg (16m 23s):
He doesn't care.

Terry Wilcox (16m 25s):
He doesn't care. He doesn't have an answer, because that's how complicated it is. This is very reminiscent of what happened, I believe it was with Amgen a few years ago, they had a PCSK9 inhibitor, I think.

Dr. Bob Goldberg (16m 35s):
That's right.

Terry Wilcox (16m 35s):
It came out at $14,000 a year. Amgen cut that in half to roughly $7000 or $6000, or something around that area. They had to do the same thing. They couldn't get on the formulary with the $7,000 one, because they're like, "No, no, no., we want the $14,000 one so we can get the rebate of $7,000" or whatever it is. Then they also still have the luxury of charging various patients with high deductibles or their co-insurance off that list price. See, that's what people don't understand. They still are charging you off that list price. That's why list price matters. That's one thing I will agree with David Mitchell on, list price does matter when people are being charged off that.

Terry Wilcox (17m 19s):
The fact is they shouldn't be. One of the last questions I posed to George was on the new ways patients are accessing insulin. Walmart, Amazon, and others, are jumping into the prescription drug market. Because it's not the most traditional method of accessing medicine, some patients are skeptical. I asked him about the current landscape of insulin, particularly on these new generics that we're seeing at Walmart, Costco, and other retailers. Here's what George had to say.

George Huntley (17m 43s):
I think those are wonderful. I really do. Getting the current versions of the insulins - this is the insulin that came out in the nineties, not the ones that came out in the eighties. We were talking about Humalog, NovoLog, and Lantus-type insulins, that came out in the nineties, that are what most people are still on today. Not the old R and N from the eighties, which I was on originally. Getting that at $25 is fantastic, $35 or whatever their low price is, I think that is a marvelous thing. I want to be optimistic and say, I think we are close to solving the insulin crisis in this country. From a pricing perspective, we're not quite there yet. Congress could certainly help more retailers coming out with it.

George Huntley (18m 26s):
Of course if you buy your insulin through Walmart, Amazon, or whoever's selling it, you're not getting a credit for your deductible. You're doing it outside of your health plan, but if it's only $25 or $35, you don't really care, because you have access to a drug you need to survive.

Terry Wilcox (18m 41s):
Right. If you're in some sort of high-deductible plan or a temporary plan, because you're between jobs, there's all kinds of reasons that you don't have the drug coverage that you might have in a regular employer plan. I agree with you. I think it's great. I wanted to get your take, because I know initially, Walmart used to sell more of the stuff in the eighties. It was like, don't send me to a Walmart, but now I think that's been upgraded.

George Huntley (19m 9s):
I know many people that kept them alive, so I applaud that they still have that out there, but now let's get them the good stuff.

Terry Wilcox (19m 24s):
Absolutely. The Diabetes Leadership Council is a great organization that we're going to be doing some more work with, especially on the rebate issues. I know George is gearing-up for a lot of work in that space, as we just demonstrated, is so important. 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 (20m 9s):
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 askusanything@patientsrising.org.

Dr. Bob Goldberg (20m 33s):
Now we hear how access to clinical trials and care impacts the Alzheimer's community. Our field correspondent, Kate Pecora, recently spoke with husband and wife, Jim and Geri Taylor, who are the Founders of Voices of Alzheimer's and Memory Advocate Peers. This interview was recorded before CMS released their final coverage decision for Alzheimer's treatments and it reinforced its original goal to limit coverage for those only enrolled in clinical trials. Their conversation gives perspective into who this decision will affect and why it's going to be devastating to the Alzheimer's community. Take a listen.

Kate Pecora (21m 15s):
Today I'm talking with Jim and Geri Taylor. They are supporting new Alzheimer's organizations. I wanted to talk to them to get their thoughts about ongoing research in Alzheimer's as well as the organizations that they're building. So Jim and Geri, what is your tie to the Alzheimer's community? Why did you get involved with this kind of work?

Geri Taylor (21m 44s):
I have Alzheimer's and I want to be part of the help for people with Alzheimer's.

Jim Taylor (21m 50s):
Geri was a healthcare professional for her entire career. She was a nurse and then she got her MPH, Master's in Public Health at Columbia, and she built programs to help. She ran the largest long-term care facility in New York City. While there, built new programs to support people, and people living in their homes. Taking care of people is just her nature. Immediately when she was diagnosed, ten-years-ago, she knew that she wanted to become involved to support herself, and get the good feeling that taking care of others has given her throughout her life, but also she knows that she has a message.

Kate Pecora (22m 34s):
She has a voice that will help other people. We had to enter a long article about us, in the New York Times, about six-years-ago. That kind of catapulted us to a national level where we could be more prominent and really begin to make an impact. Geri lives with a very specific philosophy and that philosophy is to live well, happily, purposefully, as long as we can.

Jim Taylor (23m 9s):
Secondly, to continually find new strategies that enable her to accommodate a declining cognition.

Kate Pecora (23m 15s):
The Memory Advocate Peers program, as you were developing this, what was some of the philosophy you thought should be front-and-center, as people become advocates for the program, and can train others who are going through the same thing. What are some of the messages you'd pass along?

Jim Taylor (23m 36s):
Initially, we wanted to bring emotional support and that's so important, I think, especially during that first year. Secondly, we wanted to help the newly diagnosed couple. By couple, dyad is the term that's used often in the industry. It's support-partner, and the person living with the disease, bringing them information over that twelve months. This organization only supports for the first twelve months, the new dyad. To bring them information about the disease in regular intervals. We have a number of focus groups, and they say there is so much information out there, it's overwhelming.

Jim Taylor (24m 18s):
It's wonderful information, but I don't know what to start with, and what to end with. So we're trying to sort through that and bring information to our clients, and care partners, over time. Finally, Geri and I strongly believe that participation in clinical trials is a crisis in this country. Less than one percent of people with Alzheimer's participate.

Kate Pecora (24m 43s):
Have you been able to participate in a clinical trial yet?

Geri Taylor (24m 47s):
I have been in a trial for...

Jim Taylor (24m 50s):
Seven years.

Geri Taylor (24m 51s):
Seven years and yeah, that's it. I'm still in.

Jim Taylor (24m 53s):
So we were really fortunate. We got into Aducanumab which is now approved, Aduhelm, by the FDA, the first trial to be approved. It's controversial, we know, and whether or not you believe, we believe very much that it did help her. When she was off for a year, when they stopped the trial for a few months and then had to restart it, we noticed a significant decline in that interim period when she was off the medication, which kind of confirmed what we had previously believed. She was benefiting by very slowly declining, but the psychological benefits, when you've got Alzheimer's, there are not a lot of positive options.

Jim Taylor (25m 35s):
You can't choose between - If you have prostate cancer, you can choose between three or four approaches. When you have Alzheimer's, until Aduhelm, there's been nothing to choose from. There's some approved drugs - Aricept, et cetera, that are inhibitors that mitigate the symptoms, but they don't slow the progression of the disease. To have something positive you can do, to participate in a clinical trial. I often joke that we've traveled up to Yale, in our case initially, to get an infusion once a month. I kind of felt driving home that I had Madame Curie in the car. Geri was so enthused.

Jim Taylor (26m 9s):
She felt like she was on the bench. She was right there with a microscope, helping the scientist, who's doing everything she could. Especially if you have children, and you have a familial chain, it's not just about trying to help yourself, helping your friends, or compatriots who have Alzheimer's. It's your direct descendants, your progeny, whose odds of developing the disease have been increased possibly, or probably, by inheriting a gene that increased your disposition to develop Alzheimer's.

Kate Pecora (26m 46s):
There are a few things that I do have to say. Obviously, Aduhelm was FDA approved earlier back in 2021. As a disclaimer, it is an FDA approved medication under accelerated approval. I believe we had an episode a couple months ago about the whole approval process and why. Like you said, it was a bit controversial. Nonetheless, many people are seeming to benefit from it right now, including you, Geri. The last thing that I want to talk about is The Voices of Alzheimer's organization that you've recently developed. Could you go over what you hope to achieve starting this organization? What was the promise that you set-out to bring about as you were developing it?

Jim Taylor (27m 28s):
Geri is a very outstanding person. I'm sorry she has reached the point where she doesn't speak-up as much, because it's a huge loss not to have her be able to articulate the evolution of the changes in her mind and her cognition. I hate talking so much, but obviously it doesn't hold me back, as you've noticed. I've often wanted to find a group of colleagues in whom she would find a similar mission and was dedicated to speaking-out and helping others. Recently we've met some outstanding individuals and I talked to each of them and I said, would you be interested in getting together a small group of outstanding individuals and forming an organization, which we subsequently have called, The Voices of Alzheimer's.

Jim Taylor (28m 22s):
We have five people, living with the disease, and myself. I call myself the Secretary of the group. We've incorporated as a nonprofit, but our goal is to speak-out and provide a platform. I've sent many emails to make the community aware of our availability. So pro bono, we are willing to meet with researchers, pharmaceutical companies, advocacy groups, and answer their questions. In just a few months, Kate, it's been wonderful. We've already gotten quite involved. You probably know, I'm sure you do, that The Center for Medicare and Medicaid Services, CMS, has decided in a preliminary basis, not to cover, for a large part, Aducanumab Aduhelm, so our group has been asked to speak out about that.

Jim Taylor (29m 12s):
We've been very vocal about that and our voice has been projected, picked-up and heard nationwide.

Kate Pecora (29m 26s):
What do you think is the most valuable thing to come out of any one drug? What would you like to see as a good clinical outcome?

Geri Taylor (29m 35s):
I would imagine another drug that would work for more people. It seems at this time, it's a very thin group of people who can take the drug in a way that they are comfortable. I think more can be done for more people.

Jim Taylor (29m 48s):
First of all, I think we've got to resolve this Medicare issue. I'll put that aside, even though it's a huge thing to deal with. I think most of the researchers believe, that to have an effective, we want a slow cognition. I don't think there's anything on the map right now that we think will be a breakthrough and cure, or prevent Alzheimer's, but to slow cognition by multiple years. Most of these medications remove plaque from the brain amyloid. That's one benefit.

Jim Taylor (30m 29s):
We need a cocktail, like aids patients have, that will address the plaque on the brain. Also, the tangles inside the brain which do damage. Also, drugs that will slow the inflammation. The drugs, the MAB drugs, monoclonal antibodies, are the farthest along in removing the plaque, but that's a limited benefit. We've seen that. We now need to look at what can you accomplish by adding a TAL drug, and an anti-inflammation drug. These are much less developed, but there is some exciting news on both of those fronts. Some positive Phase 2 with TALs and positive inflammation drugs.

Jim Taylor (31m 10s):
To be able to do that, and to build a cocktail, the savings of delaying the onset of the symptoms, or prolonging the life of someone living with Alzheimer's, is a phenomenally positive business case.

Dr. Bob Goldberg (31m 23s):
Thank you, Kate, for bringing us that conversation. It's that time of the show where we get to hear from patients about the healthcare policies and issues that are affecting them. Here is this week's patient correspondent.

CJ (31m 35s):
My name is CJ. I have latent autoimmune diabetes in adults. I am a resident of the Seventh Congressional District in Virginia. As a patient advocate, I have people reach-out to me, because they're not able to afford insulin. As a result, they ration the insulin that they have left. Not only is this extremely heartbreaking, but extremely dangerous. When I first heard the Affordable Insulin Now Act was passed by the US House of Representatives, capping insulin prices at $35, or twenty-five percent of a patient's insurance plan, I was thrilled. However, after doing some research, I realized that the Affordable Insulin Now Act, does not necessarily mean affordable insulin for people who are uninsured right now.

CJ (32m 22s):
To me, this is a huge problem, because people of color make-up the majority of the uninsured, the people that I serve. Although the government has increased Medicaid, and marketplace coverage in recent years, thirty-seven percent of Americans are not eligible, because the states that expand Medicaid, their income was too high to qualify for marketplace subsidies, or their immigration status made them ineligible. Uninsured Americans with diabetes are much more likely to use cheaper and less effective insulin than their insured peers, pay full list price for insulin over people with insurance or Medicaid plans, spend more out-of-pocket than the privately insured, and in part, being unable to afford prescription medications more often.

CJ (33m 6s):
The cost of prescription medications is out-of-reach for many uninsured patients, even through compassionate use, or discount programs. It does nothing for the people who make too much for Medicaid and not enough for private insurance. That does not sit well with me. When the diabetes community says, make insulin affordable for everyone, we mean for everyone, regardless of income, insurance coverage, or lack-there-of. Until that happens for everyone, the fight continues.

Dr. Bob Goldberg (33m 39s):
Do you want to share your healthcare story or advocate for a policy that affects you? Join us right here on the podcast and become our next patient correspondent. All you have to do is send us an email at podcast@patientsrising.org. That is podcast@patientsrising.org.

Terry Wilcox (33m 50s):
Thank you for listening to today's episode. If you've been enjoying the podcast, and we hope you are, let us know by leaving us a rating, and a review, and feel free to pass the episode along to friends and family. This helps us grow our audience and raise awareness for the health policies that impact patients and caregivers just like you.

Dr. Bob Goldberg (34m 8s):
Use the "follow" button to get alerts on when our next episode is live. It's free. It won't hit you back and you'll get the latest episode sent straight to your favorite app.

Terry Wilcox (34m 17s):
I'll be out next week, but field correspondent, Kate Pecora, will be filling-in and joining Dr. Bob. Don't miss that episode, which will be live next Friday.

Dr. Bob Goldberg (34m 17s):
You're going to leave me unsupervised? Alright...

Terry Wilcox (34m 17s):
You're unsupervised.

Dr. Bob Goldberg (34m 17s):
Alright. Okay, alright.

Terry Wilcox (34m 17s):
Until then, for Dr. Bob and everyone at Patients Rising, I'm Terry Wilcox. Stay healthy!