Arthena Caston: If I wake up in the morning and I know my name, and I know what today is, it’s going to be a great day. 

Dan Gorenstein: Hey, it’s Dan. 

This is the second part of our special series about the fallout from the FDA’s surprising approval of aducanumab, a new Alzheimer’s drug also known as Aduhelm.

The controversial treatment, with its questionable effectiveness and $56,000 a year price tag, is sending shockwaves through the U.S. health care system.

In the first installment of our series, we spoke with a doctor about how he’s navigating all of the uncertainties around this new drug. 

Today, part 2, we hear a patient’s point of view.

From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein, and this is Tradeoffs.

AC: Okay, it’s recording. My name is Arthena Caston. I am 56 years old. I was actually diagnosed with early onset dementia five years ago. 

DG: Arthena lives in Macon, Georgia with her husband and their two dogs, Sassy and Shippo.

She also serves on the board of the Alzheimer’s Association and earlier this year, she testified at the FDA in support of Aduhelm.

Her troubles with the disease first began about seven years ago. 

AC: I was actually working as an underwriter for an insurance company, one of the major insurance companies in United States. And then all of a sudden I got to the point where I couldn’t remember to call clients back. I couldn’t remember things that I knew I needed to do. And then one day I went to work. I left my car running. I got out of the car, went inside, worked 8 hours and got back to the car at night and I knew right then something was wrong. 

DG: Arthena’s doctors referred her to some brain specialists. During one appointment, in the middle of a simple test, Arthena’s diagnosis dawned on her.

AC: I knew because he asked me and I’ll never forget. He asked me to name 30 animals and I would start naming the animals. And he would say, Ms. Caston, you’ve already named that one. And I couldn’t get to 30 animals. So I knew then, and he knew at that point, because by that time I was crying.

DG: Arthena sat down with her own doctor soon after that visit. 

AC: It was really sad day  He just said very lightly. He said, I’m sorry the tests have come back and it is definitely mild cognitive impairment. I’m going to give you some medication but I need you to know is where we need to go from here. And that’s when I just kind of just got really quiet because I talk a lot, but I didn’t say anything because he said, “I’m going to give you five to 10 years. And then at that time you’ll probably be dead. And so I think you need to go home and get your house in order.” Someone tells you that it’s like, wow, I was 51 years old and you’re telling me that I’m going to be dead in 10 years. In five years, I wouldn’t be able to do anything for myself. What do you say? You can’t say anything and at that point. Excuse me. Every time I think about it, I think about what am I going to do?

DG: It’s been five years…and since that day Arthena’s exceeded her doctor’s prognosis.

She’s busy…speaking on behalf of the Alzheimer’s Association all around the country.

She does crafts, she’s got a part-time job. 

And…from the start, she’s been on medication.

AC: He put me on an Exelon patch but I laugh now because every morning I would wake up and the patch would be in the bed somewhere. It was always in the bed. And I always make the joke and said, “My bed had better memory than me. It was getting more medicine than I was.” It was always in the bed somewhere, and I was thinking, this isn’t working, this is not working.

DG: You’ve been on two different drugs…neither seems to have helped much.

Arthena, do you remember when you first heard the FDA had approved aducanumab?

AC: I was actually on a Zoom call for a professional group, speaking about issues with disparities and medicines for people of color. And it was like 35 doctors on the call – very, very professional call. And it came through and the young lady said, “I just have to say something. We just got the note now.” I was like, I just totally forgot the professionalism and said, “Yes! Yes! Yes!” That’s exactly what happened. Everybody just started clapping on the call because they were just so happy for me.

DG: You were, you were freaking out.

AC: I did, I started crying right then. Right then.

DG: Why?

AC: When I got to speak to the FDA I asked for just a little more time. That’s all I asked for. I want to be right here where I can still drive, or that I can be with my grandchildren, enjoy the time I have with my husband and my family, continue to talk about Alzheimer’s and give people the hope that says it’s okay, you may have this disease, but that does not mean it’s the end.

DG: Biogen has said this drug could delay cognitive decline by seven months…could be shorter…could be longer…but eventually that decline will come. How do you think about all this? 

AC: Seven months to me is like seven years. And I know you may not understand that because you don’t have the disease, but seven months to me is a long time. Each day is a long time. Each minute is a long time. You know, when I’ve talked to my children and I say to them, I want us all to come together for Christmas because I don’t know what the next Christmas is going to be. No one knows what is going to happen day by day. 

DG: After the break, Arthena’s first attempt to get an aducanumab prescription…and her take on its $56,000 price tag.

MIDROLL

DG: We’re back with Arthena Caston, a 56-year-old with early onset Alzheimer’s disease…and a board member of the Alzheimer’s Association.  

She’s sharing her hopes and concerns about aducanumab, the first new treatment for the disease to hit the market in nearly 20 years.

Arthena, have you talked to your doctor yet about maybe taking this drug?

AC: I did speak with him briefly. He said he was waiting to see what more data was coming out. He just kept saying, I’m thinking it may not be good, but it could be good. He’s just kind of saying, let me think, let me see. That’s all he just kept saying, let me see. And I said, okay, so we’ll see.

DG: When you got off the phone, what did you think was the first thing you thought?

AC: I’m going to have to find me a new doctor because I can’t wait for you to decide for whatever reason. I mean, I understand a lot of physicians aren’t as excited for whatever reason they aren’t. But the fact is, think about your patients who are asking for help and say, let me see what I can do for you as much as I possibly can. That’s what I feel.

DG: As you may know, the drug did cause some side effects during the trial things like brain swelling and headaches, and it’s unclear exactly how big of a benefit it has in terms of slowing cognitive decline as you and I already discussed. How are you thinking about, for you, weighing those risks and benefits?

AC: You know, my husband and I discussed that and he’s very, very worried about the headaches and, and the, the brain bleeds and so forth and so on. And I would be not telling you the truth if I said I don’t worry about that also, but at the same time I think about this, what else do I have to lose? Because I know at some point in time, I am going to be that person who is the one that’s sitting in a chair watching, Leave it to Beaver all day. I know that. So I don’t want to have the side effects, but I want to have a little more time.

DG: Do you think that the $56,000 price tag that Biogen put on this drug is a fair price for something that does not stop or cure this disease?

AC: Well, the first thing, and I’ll be very honest, when I heard the cost of the drug, I was totally like, oh my God, that, what can I say? Because my husband and I both said there’s no way that we can afford that. I don’t know anybody. That can, to be honest with you except one, man, I know one man can buy it. That’s it. Because I’m always speaking about health disparities, especially among people of color, I’m worried about that. I really worried about that. Why would you charge people $56,000 when you know that most of the people who are going to take this drug may not afford that? That’s just plain ridiculous. 

DG: And maybe the price will get changed, who knows, but let’s say a million people ended up taking this drug that could cost more than $50 billion a year. People’s premiums would go up. Taxes would go up. The deficit would climb. If a lot of people end up on this drug, it could cost so much money. There’s less for other things. How do you weigh the benefit of you having more time versus the big price tag that the whole society has to pay to cover it. You know what I’m asking?

AC: That’s such a hard question for me, because this is the way people feel about Alzheimer’s as well as cancer or any other disease. Until it touches you personally, it is not important to you. If you went home and said, you know, I’m having symptoms of so-and-so you’d want everybody and their mom to go and be for your cause. Cause that’s what you want. And that’s what we see. I understand what you’re saying about Medicare and Medicaid. I honestly do. God knows I do. But right now I’m thinking, can I just get a little more time? It’s selfish of me. I’ll be the first one to say it’s selfish of me, but everybody wants to live as long as possible. Would you not say that?

DG: I would.

AC: And that’s why we are where we are now.

DG: And Arthena, I guess this is my final question. You have played an important role in this debate that our country is having, you know, not everybody goes and testifies up in front of the FDA. if you had a chance to talk to Biogen about their $56,000 price tag, what would you tell them?

AC: Oh my gosh. I would say, let me ask you a question. People that work at Biogen are the persons who set the price tag. They may be able to afford that medication. But suppose you have a sister or brother or whoever that could not afford that medication, would you still have set the price tag at $56,000? No, you would not.

DG: And the company Biogen and other drug makers have historically said they need that money to fund all the risky research that takes them years and years to do. And one of the reasons Biogen was able to come out with aducanumab is because they charge high prices on other drugs. And that money helped fuel all this research into this very difficult disease that is Alzheimer’s.

AC: And I understand that. Believe me, I understand that, I really do, and I don’t have the answer to that. I won’t say I do. I’m just saying I would love to have the medication. I can’t afford $56,000. I don’t know anybody, but one person that can, so therefore, I may not get the medication who knows, but we’ll see, we’ll see.

DG: Arthena thank you very much for taking the time to talk to us on Tradeoffs.

AC: Thank you for giving me the chance to voice my opinion and say what I got to say.

DG: After our interview, Arthena spoke with the insurance company that covers her through her husband’s job. 

They’re still deciding whether they’ll cover Aduhelm and how much she’d owe. 

Arthena’s also thinking about switching to Medicare, which she’s eligible for due to disability, though it’s not clear yet if Medicare will cover the drug either.

As for her doctor, he’s decided against prescribing Aduhelm for now. 

But he is committed to helping Arthena find a doctor who will.

I’m Dan Gorenstein and this is Tradeoffs.