Hilary Metz Esq., talks about her father's improvement on Simufilam
Interview with Hilary Metz (video link)
In introducing herself:
Metz: My father started having symptoms, I’d say in 2019 that were just very mild kinds of things that our family would crack jokes about like, “Jeez Dad is just not as sharp,” or something. Then in 2021he just went drastically downhill within a few months. It was pretty significant how much he declined within I’d say about 6 months.
Joe: Your father is currently in the open label study taking Simufilam. Can you tell us about him, when was he diagnosed, or anything about your father we didn’t cover yet?
Metz: He was diagnosed, I would say, very early 2021. I saw my parents for a couple weeks in May and he definitely just wasn’t himself, like his old sharp, fast self. It wasn’t to the point where we were thinking we might need to hire someone to help us care for him. It wasn’t to the point where we were thinking that we might need to make arrangements to help my mom out. It wasn’t to the point where we thought we couldn’t leave him alone. This is in May 2021.
By July, my mom and my sister who are in North Carolina with him, were calling me once a week or a couple times a week both of them saying, “Gosh you know you really need to come see Dad. He’s just gone down hill. “ One of the things my mom said [was] he can’t even check his email anymore, he can’t figure out how to log into his computer and check his email, he can’t figure out how to log into his bank account online. And he had been doing that for 10 years. He had stopped making his own coffee in the morning and he always for my whole life, first thing in the morning gets up and makes a pot of coffee. So simple mundane things like that for most of us but then you have to realize if he’s not able to do those things then that's pretty serious.
That was in July. August 1st I took a week off work. I went to visit them just because I needed to see for myself how could he have gone down hill so fast within a few months? I just saw them in May. While I was there a couple things happened. We left my father at home and me and my mother were at my sister's house. My sister has two kids, I have 3 kids, and they drive my dad nuts. So we were all at my sister’s house just spending some time together, my dad was at home. My mom called me the next morning to say that when she went home my father had, he’s wearing those pleated khaki shorts you see old men wearing with their dock shoes on the waterfront. He could not figure out how to get his hand in his pocket to get his wallet. With the pleats in the pants and things he couldn’t figure out how to get his hand in the pocket to get his wallet out, so he put his hand up under his shorts and ripped his whole pocket out of the pants in order to get the wallet out.
That’s one thing he did and then another time while I was there, it was just me and my father sitting at the kitchen table, and I just said something about my mom in passing, I said, “Oh you know Mom said we’re going to go to the store later.” Or something like that. Something Very mundane, and he said to me, “Well who’s Mom?” And I said, “My Mom.” And he said, “Well, but who do you mean when you say ‘Mom?’ Who are you talking about?” And I said, “My Mother. My mother, you know Mom.” Then he said well, “But who is that? I know you’re saying Mom but who is Mom?” So I said her full name to him and he said, “Well that’s my wife!” “Yes, she’s your wife, and my mom.” And he said, “Oh okay I see what you’re saying.” And I was like, “Yeah, Dad that’s who I’m talking about.” He tried to come up with some excuse, of course, for why he couldn’t remember. He said to me, “Well it’s just that you don’t normally refer to her like that.” And I said, “Um Dad, I have been referring to her like that since I could talk probably for about 40 years now, calling her Mom.” And he said “Ok ok.. Ok Hilary fine fine you’re right.”
So in the moment of that conversation, for a little while I thought he was kind of joking with me. Then when we were done with the conversation, it wasn’t until he said, trying to make the excuse of “Well that’s just not how you normally refer to her.” It wasn’t until then that it really hit me how serious it was. That I was just like “Wow.” I felt like tomorrow I could walk into the room and he not really remember who I really am… By the end of August into the first of September I had my parents down here for visits and they approved him for the study. September first he started on the medication.
Joe: What have you witnessed and what changes have your other loved ones seen as well?
Metz: It’s hard to even quantify it besides being able to just tell you a few of the things and major differences that when you look at it in the whole, it’s life changing. He’s back to doing his regular stuff like checking his email, he’s making his coffee again in the morning, he’s doing yard work, he’s cleaning the yard, he’s mowing the lawn. He had stopped doing all that stuff. They came down to Florida, I want to say in November. Yeah because I was with them for Thanksgiving. They have a house on the west coast of Florida. Oh, and my dad drove down here and he had stopped driving.
Joe: You’re kidding!
Metz: He had stopped driving and I thought my mom was driving them down and when they got down here I met up with them,
Joe: From North Carolina you said, right?
Metz: Yeah from North Carolina. They spent the night in a hotel in Georgia so that’s not like they’re driving the whole way through, but still. But I thought my mom was driving them and my dad actually drove them the whole way and I said, “Why is dad driving?” And my Mom said, “Because he’s fine and he wants to!” And I was like, “Jeez, ok.” And before he was acting nervous about driving and wanting my mother to drive him, even just around their little town where they’ve lived for 35 years. He wasn’t even driving the trash to the dump by himself anymore.
As I was telling you when we spoke briefly before, in August when I went to see them I was already mentally making plans on how I could move back to North Carolina, work remotely, to be with my parents, to help my mom so she wouldn’t feel so stressed out and so trapped by all of a sudden having someone that she can’t leave alone. Fast forward to now, I have no plans on moving back to North Carolina at all, unless something changes that I just want to. As of now I’m actually just closing on a property here in Florida in the next couple weeks.
Metz: Thanks. Because I plan on staying here. As of now there’s no reason for me to be thinking I need to go back to North Carolina to help be a caregiver because they’re doing great. It’s not only amazing for my dad because he got some of his independence back, and I’m not going to say he’s 100%, he’s not back to where he was, let’s say in 2019. He still stutters a little bit, he still sometimes has trouble remembering the exact words that he wants to say. The biggest difference with that though, is now when I call and he answers, he sounds like himself and I can have full conversations with him. I can talk to him on the phone for 20 or 30 minutes and the only reason we get off the phone is because he’s not a big phone person, so after a while he’s like, “That’s all I’ve got for you. That’s all the updates here.”
But there were times before I went up in August, there was one time when I called him and he answered and I said, “Hey Dad how are you?” And he said, “I’m good. I’m going to get someone on the phone that can talk better than me.” And just handed the phone to my mother and walked away. And I was like, “Ok, well nice talking to you,” you know?
Joe: So impersonal.
Metz: Yeah. So my mother goes out and does whatever activities, and errands, and goes to lunch with friends, and leaves my dad alone now. He can stay there and do whatever he wants. He can get in the car and go to the dump or the store or whatever they want to do and it’s not an issue to leave him alone anymore. There’s still once in a while where I’ll ask him if he can do something, you know we’re working on all of their estate planning and just making sure all of that is in order. Especially since he is able to understand everything. There’s once in a while I’ll ask him to do something and he’ll act it’s much more difficult, and it’s a task that in the past there would be no hesitation, or no questioning it, or no “oh that sounds hard” it’s just oh you need to make a phone call and confirm something. Once in a while he’ll act like what I’m asking him to do sounds complicated, but if that’s the worst that’s happening then I’m all for it.
Joe: Do you know how long did it take for the changes to start to be noticeable to you or your mom or your sister?
Metz: So he started taking the medication September 1st and the doctor running our study, I asked him how long it normally took for people to notice any differences. And this was in private. I didn’t ask him in front of my parents. He told me that he has had reports from patients and loved ones as soon as 20 days that they’ve noticed a difference. I didn’t tell my parents that. I told my sister that just so that she could keep an eye out for it, but we agreed don’t tell my mom or dad that because we just want to see what is going to happen. After about 3 weeks I asked my mom if she noticed anything different, and my sister, and they couldn’t really tell anything different. And I asked my dad and he said, “Well, I do feel like I have a little more pep in my step.” Whatever that is supposed to mean. So something, something was happening. He could physically feel a difference…
It’s definitely a huge difference. He’s just more back to being my normal dad. He’s got his normal kind of confidence back, whereas before he was very concerned and second guessing himself about everything. Even if it was just like are we packing stuff in the car and is it time to go? He leaned on my mother to basically make sure every step he was taking was ok.
Joe: Have there been any adverse effects, any downsides that you guys have noticed?
Metz: Nothing. Literally nothing.
Joe: Did he seem to level off, decline a little, get better continually? Any notice there?
Metz: The last in person doctor visit he had was December 1, 2021 and that visit I remember went really well and he had passed some memory test that they were giving him. I think his score was the highest he’d had since starting the study and he himself was excited about that. He felt like he had won the test or something, you know like done good on the test…
So I’m not concerned about leveling off or if he still has room for improvement at this point. To be honest with you, if he never gets any better than he is right now, but he doesn’t get any worse, it’s a win all the way around…
Me personally, I don’t have expectations for him to be back to 100%, I’m just happy that he improved drastically from where he was and I feel like, yeah we could all definitely live the rest of our lives, however long that may be, with my dad at this state and be happy because we’ve got our dad and he remembers everything, and knows how to do stuff, and still participates, and I mean he’s driving around and doing well.
Joe: Driving from North Carolina, yeah!
Metz: Yeah. I mean I don’t necessarily want him to keep doing that, but he feels up to it so that’s the important part.
Joe: Cassave is currently recruiting AD patients for its phase 3 studies. Do you have any message for those that have a loved one with Alzheimer’s Disease?
Metz: Yeah it would be do whatever possible to get them in the study…
…If you can, you shouldn’t hesitate to do it. Or you should just find out where the nearest study is. I would have flown to North Carolina every month if I had to and driven them 5 hours to appointments, if I had to. It’s worth it because after a month or so you really start to see that that person is getting their life back and that affects all of us. Everyone around us.
Joe: (chat question) Would it be possible, in the name of your father, to file a petition to the FDA to expedite treatment? So many people in need of treatment. I think Anthony might be thinking here of the fact that you’re an attorney as well. To add some color to this there’s a petition right now to stop these trials as if there’s safety concerns.
Joe: And so Anthony is wondering would it be possible in the name of your father to file a petition to expedite the treatment instead?
Metz: I have thought of it, I just haven’t had a chance to look into it. The petitions that I’ve looked at that are asking to stop the trials, I don’t think they are going to hold any weight or anyone with any real background in this is going to give it any significant treatment at all. But I have thought about it, I just haven’t looked into how to do it and whatnot. I have thought about doing it though mostly just because of all the people that are against it. I just feel like they’re greedy and ignorant.
…There’s no way, they’d be signing their loved one up for the study faster than they could apologize to everyone.
Joe: Had your father been on any other medications for the symptoms?
Metz: He had started on one medication, I’m trying to think of the name of it, I believe it’s Aricept or something like that.
Joe: Yes yes yes yes, Aricept. Correct.
Metz: What I know about the drug is that it's known for not working after 6 months.
Joe: Yes. It’s a stimulant.
Metz: My father had already been taking that for well over 6 months when he started the SAVA trial and it was obviously not working because he went downhill pretty fast there towards July and August, so obviously it’s not working.
Joe: (chat question) Can you tell us more on feedback on the trial you’ve heard from your site doctor?
Metz: Well obviously he wouldn’t be telling me about specific patients and I wouldn’t ask that but he did comment to me that he has never had a patient in the trial that didn’t show at least some signs of improvement and some improvement from taking the drug. He didn’t go into detail as to how much “at least some” meant. Also I don’t know if there’s people that are accepted into the trail with more severe symptoms than my father that maybe then they don’t improve as much. I really don’t know. All I know is [the doctor] did comment to me one time that he hasn’t had a single person in a trial for this drug that didn’t improve some.
Joe: (chat question) What do you think/feel about your father potentially coming off Simufilam in the placebo trial? Should the FDA grant Breakthrough Therapy Designation?
Metz: …I’m worried what could happen in that 6 month period if he’s on a placebo. I really think that they should just do away with the placebo trials. The placebo part of it was how he acted before he got on the drug and I think to put people through a placebo phase in something like this is just cruel. You see their markers when they come in, why make them go back to being on nothing? And I know it’s not up to the company. This is what they have to do in order to get approval, so I’m not upset with it but I think that something needs to be changed.
I want to hope that my dad will be a lucky one to not be on the placebo but that doesn’t take away from the other people in the study that might get a placebo and not the real drug. It’s very scary to me. I just really hope that the FDA approves this drug before these trials are done so that the people that have already started on the medication continue to have it and that it opens it up for everyone to be able to go to their doctor and get a prescription for it.
Metz: (in response to many thank you’s from chat)
I never could have thought that the results would be this great and how much it was affecting everyone when my father, before he started taking the medication or after. It’s really life changing to go from one set of thoughts of what you plan you think you need to do, to now. I’m really happy for my dad but also my mom who feels like she can live her best retirement life now and not feel stuck at home being a caregiver. I’m just happy for both of them. I was as worried about my mom as I was my dad and now I don’t have to be.
It’s a big deal and I just hope that other people can get access to this as fast as possible because I do know some people that have family members that have Alzheimer’s that are way, way further down the road in the progression of their disease when my father started this. They either didn’t feel like they could get help for their family anymore because it was too late. One person I spoke to whose dad was much worse than my father at the point when he had started the study, I tried to convince him to at least go get his dad checked out but there’s just so much suspicion about drug trials in general. I probably would have been someone suspicious of drug trials until I was in the position where I had no other options and there was nothing out there that could help my father. I felt like there was no downside to trying it. I was desperate to not have him go down the road that his father went down. I was desperate to not have to be losing my dad but living with him physically for the next 5, 10, 15 years.
You make your decisions on things differently when it affects you personally and your family personally and I think that if the people attacking Cassava Sciences, the individuals that are attacking it I think that they just have probably a financial interest in the stock going down, and they’ve probably never had anyone in their family going through this because if they did they would do whatever it took to try to find help and a solution for their family member.