Latest / Lab to Lives / From Grief To Global Advocacy For Clinical Research In Infectious Diseases with Christian John Lillis

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From Grief To Global Advocacy For Clinical Research In Infectious Diseases with Christian John Lillis · Lab to Lives

• 0:00
  SPEAKER_00: Welcome to another episode of Transformation in Trials.
• 0:02
  SPEAKER_00: In this episode, we'll dive deeper into the topic of patient advocacy and clinical trials from a patient advocacy point of view.
• 0:09
  SPEAKER_00: And in the studio with me, I have Christian John Hurdillas.
• 0:12
  SPEAKER_00: Hello, Christian.
• 0:14
  SPEAKER_01: Hello, how are you?
• 0:15
  SPEAKER_01: Thanks for having me.
• 0:17
  SPEAKER_00: I am I am good.
• 0:18
  SPEAKER_00: In fact, where are you right now geographically?
• 0:21
  SPEAKER_01: I live in Brooklyn, New York, and that's where our office is too.
• 0:25
  SPEAKER_00: Excellent.
• 0:26
  SPEAKER_00: Well, I am uh in Copenhagen today.
• 0:29
  SPEAKER_01: Okay.
• 0:29
  SPEAKER_00: And it is actually very, very, very warm here.
• 0:32
  SPEAKER_00: I think Scandinavia is experiencing a bit of a heat wave.
• 0:35
  SPEAKER_01: It's been quite hot in New York.
• 0:37
  SPEAKER_01: The heat is not as terrible as the humidity has been.
• 0:40
  SPEAKER_01: It's been pretty awful.
• 0:42
  SPEAKER_00: As we dive into today's topic, I would be curious to hear more about how did you become a patient advocate?
• 0:50
  SPEAKER_01: There's really two primary events in my life.
• 0:52
  SPEAKER_01: I'm a gay New Yorker.
• 0:53
  SPEAKER_01: I grew up in New York City.
• 0:55
  SPEAKER_01: And when I came out at the age of 16 in 1989, it was really the height of the initial AIDS crisis.
• 1:03
  SPEAKER_01: And, you know, at that point, the federal government was more or less refusing to recognize AIDS, refusing to help the mostly gay men who were acquiring AIDS and dying of AIDS quite rapidly.
• 1:17
  SPEAKER_01: Though I was quite young, there was obviously a lot of efforts to organize within the community and then take that fight and that advocacy to insist on recognition of the disease, federal funding for the disease, for awareness campaigns, for research into treatments and preventatives, a ton of safer sex education that was going on.
• 1:39
  SPEAKER_01: And I did quite a bit of that in high school and college.
• 1:42
  SPEAKER_01: And it was a kind of radicalizing moment, you know, to be 16 and 17 years old and to realize that there was this new deadly infectious disease.
• 1:53
  SPEAKER_01: And, you know, my community was being abandoned by our government.
• 1:57
  SPEAKER_01: And so then over the years, I was involved in a lot of activism.
• 2:00
  SPEAKER_01: Didn't quite see that through the lens of patient advocacy.
• 2:04
  SPEAKER_01: Like I saw it more as like standing up for our community when we were under attack or being left, you know, to this terrible epidemic.
• 2:11
  SPEAKER_01: But many of those skills remained relevant.
• 2:14
  SPEAKER_01: And I continued to kind of be an advocate, and, you know, not just for HIV, but for, you know, healthcare in general and wanting people to have good outcomes.
• 2:22
  SPEAKER_01: I spent several years as a fundraiser for NYU Langone Medical Center.
• 2:26
  SPEAKER_01: That was just sort of part of my DNA by that point.
• 2:30
  SPEAKER_01: And then in April of 2010, the real incident happened where, well, me and my brother, we lost our mother, Peggy, to a community-acquired C.
• 2:42
  SPEAKER_01: diffacile infection.
• 2:44
  SPEAKER_01: She was only 56 years old.
• 2:46
  SPEAKER_01: She had been a single mother for most of our life, so she was like the only parent we had.
• 2:51
  SPEAKER_01: And, you know, she had us both young, so we were adults, and you know, we assumed that we would have her for a very long time.
• 2:59
  SPEAKER_01: We went from thinking that she had just maybe the stomach flu because she did teach kindergarten, to then thinking, oh, she's dehydrated, we better take her to the hospital.
• 3:08
  SPEAKER_01: And then within an hour or so being in the hospital, they told us that our mother was the sickest patient in the hospital, that she was giving antiseptic shock, and they were going to do everything they could, you know, to save her.
• 3:22
  SPEAKER_01: And and, you know, we learned in that moment that, you know, she had this, she had a condition called toxic megacolon, which is when your colon is inflamed by bacteria and inflammation and that it was caused by a bacteria called Clostri Clostridoides difficile, which is very difficult to pronounce.
• 3:44
  SPEAKER_01: People just say C.
• 3:45
  SPEAKER_01: diff.
• 3:46
  SPEAKER_01: And that her life was very much in danger.
• 3:49
  SPEAKER_01: And despite the very best efforts of the doctors at that hospital here in Brooklyn, it was a small local hospital, she died the next day.
• 3:59
  SPEAKER_00: Wow.
• 4:00
  SPEAKER_01: And it was just emotionally and personally devastating, but it was also devastating in the sense of how could we lose our mother to an infection we'd never heard of?
• 4:10
  SPEAKER_01: Sorry.
• 4:11
  SPEAKER_01: That's my dog barking in the background.
• 4:13
  SPEAKER_01: In the days following her her death, was, you know, especially like once we'd gone through the sort of funeral and the initial stages of grief.
• 4:21
  SPEAKER_01: We were like, well, how did this happen?
• 4:23
  SPEAKER_00: Yeah.
• 4:23
  SPEAKER_01: You know, how did our mom go to the dentist, a couple of days later come down with diarrhea, not connect the two, right?
• 4:31
  SPEAKER_01: And then end up with this life-threatening infection and die so rapidly.
• 4:36
  SPEAKER_01: And the more we dug into it, the more we realized that this was a disease that was causing half a million infections every year, killing 30,000 people a year, just in the US alone.
• 4:47
  SPEAKER_01: And there was no patient advocacy organization.
• 4:51
  SPEAKER_01: And even the information, if you went and you looked up online, like it said, this is a disease that affects elderly people, people in nursing homes, people with immune compromise.
• 5:00
  SPEAKER_01: None of these things were our mother.
• 5:03
  SPEAKER_01: And so there was a moment where I thought to myself, I just don't want to get out of bed anymore.
• 5:08
  SPEAKER_01: And I think what got both me and my brother out of bed and and back to work was that our mother's death was not going to be in vain.
• 5:15
  SPEAKER_01: And that led to us starting uh the Peggy Lillis Foundation in the summer of 2010.
• 5:21
  SPEAKER_01: Yeah.
• 5:21
  SPEAKER_00: Wow, that is an amazing journey to have gone through.
• 5:25
  SPEAKER_00: But also just having a disease that is so serious but that is uh unheard of, that affects so many people's lives.
• 5:33
  SPEAKER_00: That is crazy.
• 5:34
  SPEAKER_01: At that point, as we were doing research, we found that only 20% of Americans had heard of that disease, had heard of C diff.
• 5:41
  SPEAKER_01: And when you think about, you know, the number of people who died from it, it's it's quite shocking.
• 5:47
  SPEAKER_00: I'm going to ask a very basic question.
• 5:49
  SPEAKER_00: As a patient advocacy organization, what do you do?
• 5:52
  SPEAKER_01: We are building a national and now increasingly international C diff uh awareness and advocacy movement by educating the public, so raising that baseline awareness if people have heard of the disease, empowering volunteers.
• 6:05
  SPEAKER_01: So those are mostly people who've either survived the disease or, like us, have lost a loved one to the disease.
• 6:10
  SPEAKER_01: And also then doing our best to sort of shape policy.
• 6:14
  SPEAKER_01: And that can be legislative, that could be something like recently the World Health Organization released its list of priority bacterial pathogens, and C.
• 6:23
  SPEAKER_01: diff was not included.
• 6:24
  SPEAKER_01: So our organization and organizations in Europe, we are, we are calling on who to put C.
• 6:31
  SPEAKER_01: diff in that category.
• 6:32
  SPEAKER_01: So it can be a range of different policies that can be state regulatory, you know, national stuff.
• 6:39
  SPEAKER_01: And to just give like a little bit more specificity, you know, we run an annual awareness campaign, you know, where we get people featured in the media.
• 6:47
  SPEAKER_01: We've had people on CBS Evening News, I've been on CNN, we've had both stories in like self-magazine, consumer reports, you know, really trying to reach outside of acad sort of medicine to get people to, you know, to say, like, oh, like my mother's a relatable person, you know, a 56-year-old woman, prime of her life.
• 7:07
  SPEAKER_01: But then we also have people that, you know, a young woman who had C default she was pregnant, and we have elderly people.
• 7:12
  SPEAKER_01: And so we're trying to get people to understand this disease.
• 7:15
  SPEAKER_01: And then in terms of the empowering volunteers, we heard a bit about my history, so I was kind of primed to do this work.
• 7:21
  SPEAKER_01: But oftentimes people want to take action, but they're a hairstylist or they're a pitch back repair man, or there's nothing in their training or the life has prepared them to talk to the media, lobby their Congress people.
• 7:35
  SPEAKER_01: And so we spend a lot of time training them how to do that.
• 7:39
  SPEAKER_01: So they can be effective.
• 7:40
  SPEAKER_00: Yeah.
• 7:41
  SPEAKER_00: Yeah.
• 7:42
  SPEAKER_00: When it comes to the intersection between patient advocacy and life sciences and developing new drugs that can potentially treat, how do you usually interact with life science companies?
• 7:53
  SPEAKER_01: We have a few different ways that we interact.
• 7:55
  SPEAKER_01: I mean, we to be completely transparent, you know, we receive a lot of funding and sponsorship from corporations, though we are completely independent of that.
• 8:05
  SPEAKER_01: Thankfully, the US government is very strict about trying to prevent influence.
• 8:09
  SPEAKER_01: Yeah.
• 8:10
  SPEAKER_01: But we do work with them, you know, in terms of partnership.
• 8:13
  SPEAKER_01: And there's a range of different things we do, from them supporting our awareness campaigns financially and also as partners.
• 8:20
  SPEAKER_01: We also work with them to promote the clinical trials that they're running.
• 8:25
  SPEAKER_01: And we don't promote like one company's trial over the other.
• 8:28
  SPEAKER_01: We just generally promote trials for C diff and recurrent C diff so that people can learn about them and hopefully participate in them so we get better treatments.
• 8:37
  SPEAKER_01: Excuse me.
• 8:38
  SPEAKER_01: Some very direct things that we've done is convening our volunteers to meet with representatives of life science companies who are developing a new treatment.
• 8:50
  SPEAKER_01: And so even before they start the clinical trial, they're getting input from patients to understand like, what was it like to have this disease?
• 8:57
  SPEAKER_01: What do you wish was different?
• 8:59
  SPEAKER_01: You know, like if you were in a trial, how did that go for you?
• 9:02
  SPEAKER_01: So we're noticing that companies are stepping up and trying to have a more patient-centric approach.
• 9:08
  SPEAKER_01: Another example is that when a new treatment does come up for approval, we don't necessarily advocate for the approval of a specific drug, but we will participate in like the FD advisory committee, you know, with volunteers who will talk about the impact of the disease to make it tangible to the advisory committee.
• 9:26
  SPEAKER_00: Okay, that that makes a lot of sense.
• 9:27
  SPEAKER_00: When it comes to patients who have an infectious disease, it seems to me that like the time you have to decide whether to participate in a clinical trial or not may be rather short.
• 9:37
  SPEAKER_00: How how is it to enroll patients suffering from C diff in a clinical trial?
• 9:42
  SPEAKER_01: I mean that is actually quite quite challenging.
• 9:46
  SPEAKER_01: And it's challenging for a couple of reasons, and it's one of the reasons why why we're doing our best to kind of help help promote them.
• 9:52
  SPEAKER_01: Most clinical trials are run out of academic medical centers.
• 9:55
  SPEAKER_01: Something like 75% of all NIH grants go to academic medical centers, and yet academic medical centers are responsible for only 6% of the healthcare delivery in the US.
• 10:05
  SPEAKER_01: So that means that, like, you know, I live in New York City.
• 10:09
  SPEAKER_01: There are multiple academic medical centers that I can go to.
• 10:13
  SPEAKER_01: But if I lived in Ohio or if I lived in Idaho, or, you know, my my options would be far more limited.
• 10:20
  SPEAKER_01: So I think one thing, especially when you're dealing with an infectious disease, is it's acute.
• 10:24
  SPEAKER_01: So how do we catch people when they're sick, right?
• 10:27
  SPEAKER_01: And then how do we ask them to potentially get a placebo, which is a little scary, especially in infection.
• 10:34
  SPEAKER_01: And typically those trials are designed so that you're not actually getting a placebo, you're just getting sort of the current standard of care, and then they're giving you the new fin to see if that works better.
• 10:42
  SPEAKER_01: But even that can be a little frightening.
• 10:45
  SPEAKER_01: So I think what we need to do is sort of figure out how do we make trials come to people instead of people come to trials.
• 10:52
  SPEAKER_01: And we've seen some interesting and novel things with having like decentralized trials where people were like basically the trial will literally come to you.
• 11:00
  SPEAKER_01: So there's a company we're working with now that is developing a treatment for a current C diff.
• 11:05
  SPEAKER_01: And if you don't live, I think within 50 or 100 miles of a place where they have a trial, they will send, they'll do like telehealth to get you diagnosed, and then they'll send a nurse who will walk you through how to take the treatment.
• 11:17
  SPEAKER_01: And obviously that's also like a bigger expense for the company, but it also means that they get a more diverse population.
• 11:23
  SPEAKER_00: That makes sense.
• 11:24
  SPEAKER_00: Another thing we briefly discussed when we spoke during the pre-call was this aspect of new drugs being developed for an area where the way to figure out if it's a good idea or not is is it superior to the current uh treatment or is it inferior?
• 11:39
  SPEAKER_00: Where there may be some other parameters that are relevant for the actual patient population that might not just be so binary as non-inferiority.
• 11:48
  SPEAKER_00: Can you uh tell us more about that?
• 11:50
  SPEAKER_01: Yeah, I mean, so there's been a lot of there's been a lot of talk about like what are the proper endpoints.
• 11:55
  SPEAKER_01: I think particularly for you know an infectious disease, an acute disease, and and then C div specifically because it has this this nature where like you can have an initial cure and then a couple of weeks to months later the disease comes back.
• 12:10
  SPEAKER_01: So it's a little, it's a little novel in that way.
• 12:13
  SPEAKER_01: And you know, people who have sort of a primary C-div infection, if the treatment works, it's a little bit more disruptive than maybe having the flu or anything else, but they kind of then go back to their lives and they don't think about it.
• 12:26
  SPEAKER_01: But if you have recurrent C.
• 12:27
  SPEAKER_01: diff, and and just so people understand, the primary symptom of C.
• 12:31
  SPEAKER_01: diff is urgent frequent diarrhea.
• 12:34
  SPEAKER_01: So it's very difficult to work, leave the house, care for your family, you know, when you need to run to the bathroom every 20 minutes.
• 12:45
  SPEAKER_01: And, you know, you're afraid to drive, you're afraid to leave the house.
• 12:47
  SPEAKER_01: So in terms of inferiority to superiority, I think we need to think it we need to think about it not just from the sort of laboratory, did this drug perform better than the other drug?
• 13:01
  SPEAKER_01: Right.
• 13:02
  SPEAKER_01: So with C.
• 13:04
  SPEAKER_01: diff, one of the things they look at is not just that initial cure, but does this drug have lesser chance of there being a recurrence in the future?
• 13:12
  SPEAKER_01: So that's a different endpoint than just initial cure.
• 13:15
  SPEAKER_01: But I think we also need to look at things like, especially in the antibiotics and anti-infective space, like what is the mechanism of action?
• 13:22
  SPEAKER_01: You know, we have increasing antibiotic resistance, antifungal resistance.
• 13:28
  SPEAKER_01: So it's not just enough that a drug works slightly better.
• 13:32
  SPEAKER_01: It's like, can this be a you know, a bacteria, a pathogen-specific drug that we don't use broad spectrum stuff, you know, which is then contributing to those drugs being less effective over time.
• 13:45
  SPEAKER_01: And I think, you know, other things that really need to be considered is, you know, how well tolerated is it?
• 13:51
  SPEAKER_01: You know, for most, for most doctors, the first thing they prescribe for C.
• 13:54
  SPEAKER_01: diff is vancomycin.
• 13:56
  SPEAKER_01: And vancomycin is a very hard drug to tolerate.
• 13:58
  SPEAKER_01: You know, it makes people feel very ill.
• 14:00
  SPEAKER_01: It works.
• 14:01
  SPEAKER_01: But the other thing is that vancomycin is used for tons of stuff.
• 14:05
  SPEAKER_01: And so we increasingly see in people, even if they're not sick from it, we find traces of vancomyosin resistant enter cocci.
• 14:12
  SPEAKER_01: So the more we use vancomycin, the more we contribute to people being resistant to it.
• 14:16
  SPEAKER_01: And because it is such a powerful broad-spectrum drug, if we could move away from vancomycin for C.
• 14:21
  SPEAKER_01: diff and into there's another drug called pedaxamycin that's available now.
• 14:24
  SPEAKER_01: There are a couple of others in development that really just targets C.
• 14:28
  SPEAKER_01: diff, I think that is important.
• 14:29
  SPEAKER_01: You know what I'm saying?
• 14:30
  SPEAKER_01: Even if it only worked just as well as vancomycin, like just have something that is not contributing to antibiotic resistance, you know, but that requires us to look at the societal implications of the drug.
• 14:40
  SPEAKER_00: Yeah.
• 14:40
  SPEAKER_01: Right?
• 14:41
  SPEAKER_01: Not just the patient.
• 14:43
  SPEAKER_01: And then the cost effectiveness.
• 14:45
  SPEAKER_01: You know, is this a drug that's that's inexpensive to manufacture relative to something else?
• 14:51
  SPEAKER_01: Is it easy to manufacture?
• 14:52
  SPEAKER_01: You know, some drugs require incredibly complex labs and manufacturing facilities, others less so.
• 14:59
  SPEAKER_01: So, to the extent that we can also think about like how likely our patients to be able to access this drug, I think that's another important consideration.
• 15:07
  SPEAKER_01: I mean, again, all things being equal, we don't want to give people a cheaper, inferior drug.
• 15:12
  SPEAKER_01: But if it's as effective, if it's maybe even slightly more effective, like there are other considerations that I think should be taken into account.
• 15:22
  SPEAKER_01: Yeah.
• 15:22
  SPEAKER_01: So that makes a lot of sense.
• 15:25
  SPEAKER_00: Yeah, that it's it's not just about like the specific drug one-on-one.
• 15:29
  SPEAKER_00: It's like the whole ecosystem that this treatment is happening in, and how can we improve like basically the the whole ecosystem for the better, be it for that specific patient or be it for the whole community of diseases.
• 15:41
  SPEAKER_01: Yeah, and I think that you know, one of the things that we that we see now is given, you know, international travel and you know, people crossing borders, which I'm not against.
• 15:52
  SPEAKER_01: Uh but you know, like even something like the EU, where everyone can travel between, you know, citizens of the EU can travel between all these different countries, it is much easier for a pathogen to escape, yeah, you know, a small community and re-you know it can travel around the world.
• 16:05
  SPEAKER_01: We saw this with COVID, right?
• 16:07
  SPEAKER_00: Yes.
• 16:08
  SPEAKER_01: So, you know, we we need to think globally.
• 16:13
  SPEAKER_01: You know, and I think, you know, we're seeing troubling signs of things, you know, like lessening of vaccination, both in the US and elsewhere.
• 16:20
  SPEAKER_01: So we're seeing diseases that were considered, you know, gone, like measles or smallpox that we're now seeing a return to.
• 16:28
  SPEAKER_01: Maybe you don't personally want to be vaccinated against something, but what about the other people?
• 16:33
  SPEAKER_01: And obviously that's, you know, to some extent a case-by-case basis on how communicable particular diseases.
• 16:38
  SPEAKER_01: But you know, measles is more communicable than the flu or the common cold.
• 16:42
  SPEAKER_01: So very dangerous.
• 16:43
  SPEAKER_00: Yeah.
• 16:44
  SPEAKER_00: Now, of course, uh, C diff based on your organization's efforts is more well known.
• 16:49
  SPEAKER_00: But what about other diseases that are also small and that only a few people have heard of?
• 16:54
  SPEAKER_00: How do we make sure that they still stay present in the eyes of uh the sponsors for developing drugs?
• 17:00
  SPEAKER_01: Yeah, I mean, there's been a lot of effort, a lot of different efforts in the US to incentivize the development of new antibiotics and specifically but then anti-infectors more generally.
• 17:12
  SPEAKER_01: So there's been the GAIN Act, which was passed over 13 years ago, that's generating Antibiotic Incentives Now Act.
• 17:19
  SPEAKER_01: Uh there's also the LPAD, which is limited population.
• 17:23
  SPEAKER_01: So when you have something like CRE or VRE, which are terrible, terrible infections that are very, very difficult to treat, but they're also very uncommon, thankfully, but not easily spread.
• 17:35
  SPEAKER_01: But, you know, so it's very hard to get a hundred people because we may not even have a hundred people in the country in uh places to visit the US that have CR at the at the same time.
• 17:44
  SPEAKER_01: So I think, you know, we need, and you know, we're in a sort of anti-government moment in the US.
• 17:50
  SPEAKER_01: So this is not going to be popular among those people.
• 17:53
  SPEAKER_01: But I think we need to actually think about, you know, a drug development that is guided by science and by societal need rather than by profit or patient demand.
• 18:04
  SPEAKER_01: And right now, profit and patient demand, and by patient demand I mean like organized groups of patients, like cancer patients, AIDS, HIV patients.
• 18:13
  SPEAKER_01: Like these are people where you have hundreds of thousands of people that will call their senator, that will like be really angry, that will insist that you know they they continue the funding.
• 18:22
  SPEAKER_01: You don't have that for VRE.
• 18:23
  SPEAKER_01: You don't have that for even C diff.
• 18:25
  SPEAKER_01: And we're trying to build that, but it's a it's a much smaller disease.
• 18:28
  SPEAKER_01: So I think the government, whether that's the US government or other governments, they need to take more of a hand and say, like, we need to look at like what is missing.
• 18:36
  SPEAKER_01: Like, what do we not have any treatments for?
• 18:38
  SPEAKER_01: And if the public needs to pay for that, then the public needs to pay for it, you know, because the danger, you know, I think if you look at something like the gains that we've made in in oncology, right?
• 18:50
  SPEAKER_01: I mean, cancers that in our that, you know, in our lifetimes were virtually untreatable, were a death sentence.
• 18:56
  SPEAKER_01: Now people live with them, people recover from them.
• 18:59
  SPEAKER_01: And it's not really the same for infectious diseases.
• 19:01
  SPEAKER_01: If if you accept HIV, you know, I think, you know, HIV is the one where like there's been a huge amount of development.
• 19:08
  SPEAKER_01: But I don't think you have that if you don't have the community organizing and the relentless pressure of patient groups over the past 35 or 40 years.
• 19:18
  SPEAKER_00: And that that makes a lot of sense.
• 19:20
  SPEAKER_00: What what about like the individual perspective?
• 19:22
  SPEAKER_00: What can the individual patient do to influence how the treatment that they receive and the treatment that is available?
• 19:28
  SPEAKER_01: So I think that's a two-part question.
• 19:30
  SPEAKER_01: So I would say for patients who want to like advocate for themselves, we always offer, and this is something that I do myself, despite being, you know, like a professional patient advocate.
• 19:41
  SPEAKER_01: So I think the first thing is we really need for people to get more sort of media literate, more discerning.
• 19:48
  SPEAKER_01: Like you got people getting their health information from TikTok and Instagram, and you know, so we kind of had the return of like snake oil salespeople, where people are promising you, you know, an unapproved drug or supplement or something and saying it's gonna change your life and make you skinny and you know, cure your allergies or whatever.
• 20:07
  SPEAKER_01: And so we might we have to get people to like understand discernment.
• 20:10
  SPEAKER_01: And then, you know, if you if you do have an infection, if you need to go to the ER, anything like that, take somebody with you, spouse, family member, adult child, you know, it can be difficult if you're sick.
• 20:21
  SPEAKER_01: I I go back to thinking about my mother.
• 20:23
  SPEAKER_01: My mother was going into septic shock, and though she was conscious and speaking, sepsis affects your brain.
• 20:30
  SPEAKER_01: So we had to take, we had to take responsibility for her.
• 20:33
  SPEAKER_01: We had to sign papers saying that we were her healthcare proxy because the cognitive effects of sepsis.
• 20:39
  SPEAKER_01: Even with some without something that's that severe, like people are nervous, they're scared, they don't feel well.
• 20:44
  SPEAKER_01: So having somebody with you who can, you know, remember what you might not remember.
• 20:49
  SPEAKER_01: It's a scary situation.
• 20:50
  SPEAKER_01: Write, take notes, maybe record things on their phone that the doctor is saying, all very important.
• 20:55
  SPEAKER_01: And then if you're in, if you're not in such an acute situation, like we always say, like, prepare for your appointments.
• 21:02
  SPEAKER_01: Write in any issues with your condition, the treatment, any whatever has changed.
• 21:06
  SPEAKER_01: And then, you know, doctors are very busy.
• 21:08
  SPEAKER_01: So I tell people, you know, make sure they've answered all your questions.
• 21:12
  SPEAKER_01: Be polite, but be firm.
• 21:14
  SPEAKER_01: Like, don't be nasty, don't yell, but you know, be insistent that you get your questions answered or that you have the opportunity to share what's going on with you.
• 21:23
  SPEAKER_01: And so that's kind of your individual thing.
• 21:25
  SPEAKER_01: I think the other part of it, which is like, you know, maybe you had C.
• 21:29
  SPEAKER_01: diff or you had a MRSA infection.
• 21:31
  SPEAKER_01: My neighbor's business partner just got a mosquito bite golfing and it developed into a terrible MURSA infection.
• 21:37
  SPEAKER_01: He was in the hospital for six days.
• 21:39
  SPEAKER_00: Whoa.
• 21:40
  SPEAKER_01: So I think we need more people to think about that thing that happened to them and think about how lucky they were, and therefore be very interested in making sure that there are better treatments for MRSA and that there's better awareness of what MRSA looks like.
• 21:54
  SPEAKER_01: I mean, even my own house, my husband had like a blister on his foot from us running in the rain.
• 22:00
  SPEAKER_01: And we both work from home.
• 22:02
  SPEAKER_01: We we like constantly together.
• 22:04
  SPEAKER_01: And so for four days, he didn't say anything about it.
• 22:06
  SPEAKER_01: And then we were supposed to go to an event, and he was like, I don't think that we can go my foot.
• 22:10
  SPEAKER_01: And he took his sock off, and it was terrifying.
• 22:13
  SPEAKER_01: Oh no.
• 22:14
  SPEAKER_01: I was like, okay, we're going to the ER, you're getting that lance, you need antibiotics.
• 22:19
  SPEAKER_01: And he's the son of a doctor.
• 22:21
  SPEAKER_01: Like, he's I mean, let's just me.
• 22:23
  SPEAKER_01: But I think people, you know, I think particularly in the US context, I think Europeans are a little bit more chill about this, but people are like, Oh, I gotta go to work, oh, I gotta do the thing.
• 22:30
  SPEAKER_01: Oh, this will be okay, oh, it's gonna cure itself.
• 22:32
  SPEAKER_01: You know, yeah.
• 22:34
  SPEAKER_01: Care about yourself and then care about the people who may have the same infection that you had and maybe weren't so lucky.
• 22:41
  SPEAKER_00: Yeah.
• 22:41
  SPEAKER_00: Yeah.
• 22:42
  SPEAKER_00: No, that's uh that's great advice, also for basically everyone listening.
• 22:46
  SPEAKER_01: Well, and be interested.
• 22:48
  SPEAKER_00: Yes, exactly.
• 22:49
  SPEAKER_00: Like in yourself too.
• 22:51
  SPEAKER_00: Yeah.
• 22:52
  SPEAKER_01: I mean, I'm often amazed, like, you know, in the US, we when we have political, you know, we have elections or campaigns, you know, they'll be talking about like insurance and this and that, never talk about public health.
• 23:03
  SPEAKER_00: Yeah.
• 23:03
  SPEAKER_01: Like they never talk about, well, how much more money are we going to invest in public health to just make sure that people don't get infections, to make sure that sanitation is clean, that kids don't live in in areas where they're likely to get asthma because of superfund sites or pollution.
• 23:17
  SPEAKER_01: You know, all of those things, you know, if we want to talk about cutting costs or saving money for healthcare, preventing all of those things will make healthcare cheaper.
• 23:26
  SPEAKER_00: Exactly.
• 23:27
  SPEAKER_00: I couldn't agree more.
• 23:28
  SPEAKER_00: It's somehow absent.
• 23:29
  SPEAKER_00: It's more about like how do we get more treatment, but not how do we prevent disease from happening in the first place.
• 23:34
  SPEAKER_01: Yeah.
• 23:34
  SPEAKER_01: Well, you know, there's not a lot of money in prevention, it turns out.
• 23:39
  SPEAKER_00: No, no.
• 23:40
  SPEAKER_00: And then we're back to the system.
• 23:42
  SPEAKER_00: How do we provide health?
• 23:44
  SPEAKER_00: And should it be a profit game or should it be a public good?
• 23:48
  SPEAKER_01: Yeah, I mean, I mean, listen, I I think, you know, if you invest a lot of money and you know, you know this as well as I do, that clinical trials can be enormously expensive, hundreds of millions of dollars for a vaccine development, sometimes a billion dollars.
• 24:01
  SPEAKER_01: So obviously, I mean, I run a nonprofit.
• 24:03
  SPEAKER_01: We can't spend a billion dollars if we can't raise a billion dollars.
• 24:07
  SPEAKER_01: And we're not even talking about anybody getting a profit.
• 24:09
  SPEAKER_01: We're just talking about, you know, paying for costs, paying for things.
• 24:14
  SPEAKER_01: So, you know, I think like what can we do to make to make trials less expensive?
• 24:18
  SPEAKER_01: Like, is there a way to do that?
• 24:20
  SPEAKER_01: I mean, what I've noticed in trials, to be honest, is there's a lot of sub-vending.
• 24:26
  SPEAKER_01: There's a lot of like companies doing trial, they hire this vendor, that vendor hires a second vendor.
• 24:32
  SPEAKER_01: And my feeling is like throughout all of that, if they're for-profit companies, they're all trying to make a profit.
• 24:37
  SPEAKER_01: So that money is actually not going as far as it could have if the company just kept, even if the company just kept their clinical trial thing in-house and just paid their staff.
• 24:46
  SPEAKER_01: Do you know what I'm saying?
• 24:47
  SPEAKER_01: Because they're they're not paying for the profits of another person or another group of investors.
• 24:51
  SPEAKER_01: Yeah.
• 24:52
  SPEAKER_01: And again, I, you know, I don't mind some people making money, but you know, well, in this space, there's a bit of a moral uh Exactly.
• 25:01
  SPEAKER_01: We we obligation also.
• 25:03
  SPEAKER_01: Yeah, we need to keep front of mind, and and I think this is true of a lot of things in in our country and in the world where it's like, you know, I think one's ability to make a profit has to always be held side by side with the ethical and moral implications of that profit.
• 25:16
  SPEAKER_00: Yeah, I completely agree.
• 25:18
  SPEAKER_00: Well, as we start rounding off our conversation, I always ask the same question of my guest towards the end, and that is if I gave you the transformation in trials magic wand, and this magic wand can change one thing in the life sciences industry, what would you wish to change?
• 25:33
  SPEAKER_01: This is probably not gonna be shocking, but I would really like to make trials in particular, but also just healthcare in general, much more patient focused.
• 25:41
  SPEAKER_01: You know, we spoke a little bit earlier about like where are the areas that we lack effective treatments?
• 25:46
  SPEAKER_01: How do we prioritize that?
• 25:47
  SPEAKER_01: How do we pay for that development, right?
• 25:49
  SPEAKER_01: How can we make trials more inclusive of diverse groups of people?
• 25:53
  SPEAKER_01: I mean, you know, it was within our lifetimes where most trials were basically drugs were tried on men, women weren't included, people of color weren't included, elderly people weren't included, disabled people weren't included, and yet, so we want to make sure that the drug is effective, right?
• 26:09
  SPEAKER_01: But we also want to make sure that it's effective for everybody and not just for a relatively healthy, somebody like me, a relatively healthy middle-aged white guy, right?
• 26:18
  SPEAKER_01: Yeah.
• 26:18
  SPEAKER_01: Um, and then I think another thing that I think about is like, how do we keep the provider-patient relationship during a trial so patients don't just feel like a number, right?
• 26:27
  SPEAKER_01: You know, and then I think is sort of touching on what we last talked about like how do we motivate people to participate?
• 26:32
  SPEAKER_01: How do we the US in particular, though I think Western culture more broadly is very individualistic.
• 26:38
  SPEAKER_01: And we need people to start thinking about themselves as being in community.
• 26:41
  SPEAKER_01: So, like if your loved one had C diff and there's a C diff vaccine trial and you meet the criteria, join the trial, you know?
• 26:48
  SPEAKER_01: And then I think, you know, especially in the wake of COVID, I think something that everybody from regulatory agencies to local public health departments to industry, we need to think about like how do we communicate accurately and effectively with patients?
• 27:05
  SPEAKER_01: You know, most people do not have advanced degrees.
• 27:09
  SPEAKER_01: You know, most people write and speak in about an eighth grade level, eighth grade in the US.
• 27:15
  SPEAKER_01: So like middle school, the end of middle school.
• 27:17
  SPEAKER_01: And so, and I grew up very working class.
• 27:19
  SPEAKER_01: I was the first person I finally get a college degree.
• 27:21
  SPEAKER_01: So, like, how do we talk to those people in a way that is sympathetic, empathetic, isn't patronizing, isn't talking down to them and motivate them to want to be involved, not just for them as a patient, but for their larger community.
• 27:37
  SPEAKER_01: And I think that that is something that maybe decentralized trials, maybe sort of meeting people where they are, something that I really appreciate that happened in New York, thanks to some of our congresspeople when the COVID vaccines were first available, is that they brought trucks to the communities.
• 27:52
  SPEAKER_00: But that's great.
• 27:54
  SPEAKER_01: Communities that are underserved and also are not native English speakers.
• 27:58
  SPEAKER_01: And I think that that actually enormously helped the uptake of the vaccine.
• 28:02
  SPEAKER_01: And again, maybe like I I think we need to think beyond ourselves because the people in those communities are also the people who work in hotels, they work in restaurants, they clean up after white-collar professionals.
• 28:15
  SPEAKER_01: Vaccinating those people is going to protect us and protect them.
• 28:19
  SPEAKER_01: So, you know, so even if you need to have a little bit of a selfishness in your interest, you have an interest in those people being vaccinated or being treated for their communicable disease and not giving it to you, you know.
• 28:32
  SPEAKER_00: That that makes a lot of sense.
• 28:33
  SPEAKER_00: Well, uh, where can my listeners find more information about your foundation?
• 28:37
  SPEAKER_01: Well, you can go to cdiff.org.
• 28:40
  SPEAKER_01: So cdif.org.
• 28:43
  SPEAKER_01: That is the website for the Peggy Lillis Foundation.
• 28:46
  SPEAKER_01: You can also follow us on on most social media.
• 28:48
  SPEAKER_01: We're on Instagram, TikTok, LinkedIn, Facebook, all at Peggy Fund, because Peggy Lillis Foundation is too long.
• 28:58
  SPEAKER_01: You just look us up.
• 28:59
  SPEAKER_01: I mean, Peggy, you know, my last name, which of course is my mother's last name, is very uncommon.
• 29:04
  SPEAKER_01: So if you Google Peggy Lillis, you'll find us.
• 29:07
  SPEAKER_00: Awesome.
• 29:07
  SPEAKER_00: Well, it was such a pleasure talking to you.
• 29:09
  SPEAKER_00: Thank you so much for taking me.
• 29:11
  SPEAKER_01: Same.
• 29:11
  SPEAKER_01: Thank you for having me, Vana.