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Tony on clinical trials

Curious about clinical trials? Interested to learn more about how to take part? Keen to hear from someone who has been there and done that? In this episode of the CFStrong podcast we chat with Tony about his experience getting involved in clinical trials. Tony shares his experience and his advice for anyone interested in putting their hand up for a clinical trial.

Tony, sitting on a jet ski on a trailer. He is wearing a red t-shirt with Cystic Fibrosis written on it in white.

Look, I would say it's important they do the homework, read a little bit about the medication, if you can. Nine times out of 10, it's there's nothing about on the internet, but in saying that the hospital staff, you know, or the clinical staff or whoever the person that's helping you with the trial, they give you enough information, to give you a very good understanding of how the drug works and what the background is behind it. I would basically make a list of questions and I would ask, you know, the clinical trial staff, all the questions and concerns I have.

Transcript

Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first person stories, conversations with health professionals, friends and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice. And you should always follow the advice of your clinic team regarding your health.

Kirby: Hello, I’m Kirby and in this episode of the CFStrong podcast, we’re talking with Tony about his experience participating in clinical trials. Thanks so much for joining us today, Tony. Can you start by telling us a little bit about yourself?

Tony: Hey, how you going. So, I’m Tony Hanna. 39 years old, live with cystic fibrosis. I live in Melbourne, Victoria.

Kirby: Awesome. Thanks, Tony. And yes, thank you so much for joining us. Let’s chat a little bit about clinical trials. So first off, what is a clinical trial?

Tony: Basically, a clinical trial is a research study. It’s performed on people who basically basically want to try out different drugs or, you know, hospitals or medical fields or even companies. They want to try different drugs. So, they put you in a study where a drug is trialed on you. And basically, that’s that’s a little bit about what a clinical trial is.

Kirby: And when did you first participate in a clinical trial? When was your first one?

Tony: Um, my first clinical trial would have been? I was about 25 years old. Yeah, I was 25 years old. That was my first clinical trial.

Kirby: So that’s about 15 years ago, roughly. Yeah,

Tony: Yeah. Yeah. Wow.

Kirby: And how many trials have you been a part of in the last 15 years?

Tony: I’ve actually, I’ve done three in the past. And I’m actually doing one at the moment so four in total, including this one.

Kirby: Can you tell us about one of the clinical trials that you have been on in the past? I know we can’t talk much about the one that you’re on at the moment. But can you tell me about one of the trials that you’ve been on in the past? And talk to me about what what that whole experience was like?

Tony: Yeah, yeah. Look, the experience, it’s overwhelming. It’s a, it’s a good feeling. It’s definitely going into a trial, you, you question it, it’s normal. And once you’re in the trial, it’s like you’re in the zone, you know, things are going good, and you feel good about yourself. For me, you know, when I did my last trial, which would have been about, was pre COVID, it actually felt, felt good. Going in there was overwhelmed. A little bit hesitant. But with reassurance, I kind of went in with, you know, basically, a lot of knowledge, it was a good feeling, exciting feeling. Straight off the bat, I felt a change and improvement. This was an inhaled medication, which I did. Definitely, definitely helped me definitely felt good to be able to, not only, you know, basically reduce, you know, hospital admissions and, and, you know, my coughing and, you know, things like that, but it was more of a, hey, I feel good, I feel well, and I feel good to be able to do more stuff. You know, this is a drug that’s going to be on the market one day, and it’s going to be able to help the new kids now, the newborn, the new kids that are coming up with cystic fibrosis to live, you know, a healthy life.

Kirby: When you’re, when you start a clinical trial is I mean, you’re starting a new, a new drug treatment or new medication or something like that. Is it challenging sometimes, to try and get into this new routine of like this new drug? Is that sometimes a challenge?

Tony: Yeah look, you know, because you’re basically introducing a whole new routine into your life. So, whether it’d be a tablet or a puffer, or syrup you’re drinking or even a medical device. You basically have to add time into your day, and a regime that’s going to work for you to introduce this medication and you kind of have to admit it, medication is not going to work if you work with the medication basically. So, it’s very important that you basically use the medication on time every time and and you’re going to be able to get your best result. But yes, you have to put a regime in place and say, you know, I will do my medication at eight o’clock in the morning, and I’ll do it again in 12 hours, eight o’clock. So, you’re not having big gaps or small gaps, you kind of have to stick to a regime. Yeah.

Kirby: And I guess, you know, in your sort of general day to day life, you can maybe be a little bit flexible with how you do things. But when you’re doing a trial, you kind of have to stick to what they tell you to do, because it’s all being tested.

Tony: Yeah, that’s exactly right. That’s exactly right. You know, and they ask you questions, you know, along the way, what aren’t you taking medication? You know, what time you’re taking medication? It’s a common question, you’re asked. Did you introduce any other medication, so you kind of have to go with how they tell you to do things. You can’t just pick up and do what you want to do. But I mean, there’s a reason for that. And the reason is, the medication works, when it’s taken out a particular hour of the day, with a particular gap in between.

Kirby: Tell me a little bit about the process. How do you find out about the clinical trials?

Tony: With with the ones I’ve done in the past, basically, my, basically, hospital reached out to me on a few different occasions, and they basically reached out to me and said, hey, we’ve got a new drug. How do you feel about a trial? And that’s how I found out about it. There is sometimes information that goes around and says, hey, you know, we’re offering a trial for in our drug, how do you feel about participating? But in my instance, I was actually approached by this, you know, the hospital and medical stuff.

Kirby: And then what happens next? So, they’ve approached you about a trial that’s happening, are there any sort of like tests or, like processes that you have to go through before the trial kicks off?

Tony: Um, yeah, look, you know, they’ve they’ve heaps of tests involved, you know, you got blood tests, X rays, you know, ECGs, that you test. Basically, they check everything, you know, cholesterol, blood pressure, and it’s all done in house or in hospital, and they do good check. And they check you on a regular basis throughout the actual trial, to make sure you don’t, you know, get worse or deteriorate, and that the drug is effective and working.

Kirby: So, you’ve signed up for the clinical trial, you’ve done all the tests and everything to sort of tick all the boxes to say, yes, you can be a part of the trial. What’s it actually like doing a clinical trial?

Tony: Look, clinical trials are good fun. They’re definitely nerve wracking. You don’t know what to expect exciting, but you don’t know what to expect. Look, feels good. Knowing that you’re participating in a drug that could potentially help you and others in the future. I, in the past, when I’ve done my clinical trials, and carried one of those now, I’ve always had that overwhelmed feeling is like, hey, we know, I’m getting picked by me. It’s definitely a good feeling but.

Kirby: What about through the process? How have you found the support that you’ve received from the sort of doctors and the research researchers? Like, how much support do they give you when you’re in when you’re doing a clinical trial?

Tony: Look the sky’s the limit. There is that much support, you know, they’re there for you at anytime you need help or assistance. You know, you can ask any questions or your questions to ask. I think when it comes to clinical trials, they had peak, the staff that do the clinical trials, there’s no shortcuts taken, definitely, you know, all your questions can be answered. Everything’s explained to you, you know, really well. You know, it’s, it’s one of the things it’s one of the things where you go into it, like I said, you go in a little bit overwhelmed, but they give you reassurance, they make you feel good, you know, and yeah, so it’s a good, good feeling.

Kirby: Talk to me a little bit about what the, some of the challenges might be of doing a clinical trial,

Tony: The biggest one is going backwards. So feeling, you know, not the greatest when you had a hope that you’d feel better. For me in the past, that was the you know, for example, cystic fibrosis, you know, there’s a lot of coughing involved. When I’m well and then you know, you introduce a drug that may make you feel worse, so you might cough more you know, you may become I’m a little bit more of a logic, these are the things that go into that go into a clinical trial. So you have to, you have to understand that there is going to always be a little bit of, I’d say, hiccups, you know, but for me, you know, thankfully, I’ve had, you know, a smooth run before my clinical trials.

Kirby: Yeah, and I guess, look, you never know how you might respond to the treatment, I guess. So, you know, there might, there might be some of those, you know, you might feel end up feeling worse, I guess.

Tony: Yeah, that’s right. That’s exactly right. You don’t know. You don’t know until you basically try the drug. And you may become better, you may become worse, you may stay safe, stay stable, you might have no change.

Kirby: And have you ever had an experience where the clinical trial hasn’t sort of gone to plan and you have decided that you don’t want to be a part of it anymore?

Tony: No, no, I haven’t actually, I’ve, I’ve been fortunate enough to respond well, to most of the clinical trials that I’ve done all of the clinical trials. Like anything you feel, you don’t feel the greatest at the start. And I think that’s just medication changes in the body reacting. But I haven’t had any, I haven’t done any studies where I’ve had to basically pull the pin and say, no, I’m not going to do it anymore. I’ve continued with my studies.

Kirby: But have you felt through the process that that was an option for you? Like you never felt pressured? You always felt like if it wasn’t working, you could walk away?

Tony: Yeah, 100%. You know, and they kind of tell you say, listen, you know, you’re in a trial this is a process, this the procedure, this is the list of things that can happen through free to pull out anytime. It’s there’s no pressure, definitely no pressure, you know, they will not let you go if you have to go. And you know, whether it’s for a personal reason, or if you feel like the medication isn’t working for you, you’re free to leave at any time.

Kirby: So, I guess that makes the process a little bit a little bit easier. Because you know that you’re not sort of locked in if you need to, if you need to pull the pin, as you say, you can.

Tony: Yeah, that’s right. That’s exactly right. So if you feel like you need to leave, then you can leave it.

Kirby: So Tony, I’m curious to know, you’ve done for clinical trials over the last sort of 15 years or so. What is it that you what is it that keeps you going back? Why do you keep putting your hand up to be a part of a clinical trial?

Tony: A couple of things. The main one is to basically give all the new kids that are born with cystic fibrosis opportunity to live a full and healthy life. And that’s honestly the main reason. Another reason is to that, you know, you get, you basically get a second chance at life. We’re given a drug that potentially is meant to help us. And and, you know, out of the four times that has helped me and it’s improved my health. But, you know, I like to go back and do a trial. You know, like I said, just just to help, all the newborns that are coming up, you know, with cystic fibrosis in the future.

Kirby: Yeah, I guess if you participate in a trial now, that could be a drug that could change somebody’s life.

Tony: That’s exactly right. That’s exactly right. And, you know, it’s a good feeling, knowing that have been have been able to help somebody in the future, to live a basically a normal life.

Kirby: And what would you say to people who were maybe thinking about getting involved in a clinical trial? What would your advice be to those people?

Tony: Look, I would say it’s important they do the homework, read a little bit about the medication, if you can, nine times out of 10, it’s there’s nothing about on the internet, but in saying that the hospital staff, you know, or the clinical staff or whoever the person that’s helping you with the trial, they give you enough information, to give you a very good understanding of how the drug works and what the background is behind it. I would, I would basically make a list of questions. And I would ask, you know, the clinical trial staff, all the questions and concerns I have, think about, like, you know, the risks and benefits, you know, so these are all questions that you’d have to ask and make sure you know, you’re in the right. You’re participating in the right, you know, drug for the right reason.

Kirby: Yeah. And I guess, that you’re comfortable with, with what that trial might mean for you.

Tony: Yeah, that’s right. You know, you’ve got, you know, rights and responsibilities and, you know, to participate in a drug and, and to the clinical trial staff, they basically, they basically give you a better understanding and make sure you know, you’re confident enough to get into the trial, you know, they don’t just sign you up, they basically become like your best friend, you know, you got a lot of a lot of contact with them, you know, you talk to them, you know, on a sample on a weekly basis, you know, sometimes on a daily basis.

Kirby: And they can provide you with that sort of extra information. If you’re, if you’re worried about something, you can ask those people and they can answer your questions.

Tony: Yeah, that’s right. That’s right, exactly. Right. You know, you’re not in the dark. If that’s what you’re thinking you definitely are in the dark, you know, they basically, they help you through the process, they fill in, you know, all the blank spots that you might have.

Voiceover: Thanks for listening to this episode of The CFStrong podcast, make sure you subscribe on your favorite podcast listening platform, so you don’t miss the next episode. And if you enjoyed this podcast, we’d really appreciate if you could leave us a review. It helps other people find safe, strong, or share us with your friends. Also, a quick reminder that the views expressed in the sea of strong podcast may not be reflective of cystic fibrosis community cares viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible thanks to support provided by the Australian Government and was produced by CF Community Care and CF Western Australia. Our theme music is spark of inspiration by Shane Ivers from Silverman Sound. Thanks for listening, and we’ll talk to you next time.

This podcast was published in October 2022. If you would like to share your story, please contact us at admin@cfcc.org.au. We’d love to hear from you and so would our listeners.