HEATHER MCCARTHY PODCAST EXTRAS
AM: So over time, antibiotics have — the message that they’re not all good is definitely out there and people have received that message, but from my point of view and I think many others, I would assume, the reasons that we know that they’re not altogether good for us is not usually connected to mental health issues. I mean, it was news to me to discover that there was a black box warning attached to an antibiotic, and I think that would probably be true of many people, that they were not aware of that. Your son experienced the skepticism and disbelief of medical professionals throughout the time that he was dealing with that. In the years since he’s not been with us, have you encountered that skepticism from people as you’ve told the story because people don’t identify antibiotics with that kind of outcome?
HM: Yeah. And I want to be clear. You know, the issue with Levaquin is a huge issue with me, but his death was much more than Levaquin. His death was a whole system that failed him and a whole perspective on behalf of medical professionals. I mean, what can I say? No one wanted me to pursue this. You know, initially it was like “this is some type of manifestation of your grief. You know, everyone has to figure things out and come up with an excuse” —
AM: And who’s saying this to you?
HM: You know, I think people have that — people are very uncomfortable with death. People are very uncomfortable if there might be a death that’s self-inflicted. So I think that they try to kind of project on the person who’s dealing with it, whether it’s their family member or loved on, that it’s their way of coping, to come up with this. And who’s saying that? You know, friends. I don’t think it’s someone’s bad intent; I just think that’s the way our culture sees these things — friends, other family members, you know. If they can talk about it, if they do have the strength to even think about it — which a lot of people don’t; they don’t talk about it at all; they can’t; it’s too painful. And I can certainly understand that. And that’s why it’s important for the people who can talk about it to speak up.
But I still think that there’s some skepticism, but I could tell you, we did depositions; the more you talk about it — and I’m never afraid to talk about it. I don’t take things personal. If someone doesn’t want to listen to me, that’s fine; that’s not going to hurt me. But I do feel obligated, if I think that there’s an issue with a medication, to speak up. But we were doing a deposition in one case dealing with Levaquin and the cameraman who videotaped it stayed behind and he stayed behind till everyone left, walked out, and he asked if he could see me for a minute, and he’s like, I’ve had all those — I took Levaquin like four years ago. Another main effect from Levaquin is a lot of people have joint ruptures and tears, especially with the Achilles heel, because what Levaquin does is it causes mitochondrial damage, which is damage at the cellular level, which affects your ability to think. It can affect your joints. It can attack your whole body, including your brain and your mind. But it’s just been amazing the more I talk about it and all the emails I get and all the letters I get from people — “this happened to me,” “this all makes such perfect sense now.” Like, people who are thinking they are having all these mental health issues, and it was from the Cipro they took. You know? It’s just — once people put it together, it becomes so crystal clear. And I don’t think that’s a product of making, you know, things fit that don’t fit. I think it’s because they just never thought that it could be the medication. You know? To tear your Achilles heel is a rare thing; that doesn’t happen. But if you had a fluoroquinolone in the past, you know, few years, the likelihood of that happening coupled with you ingesting that drug, they’re probably related. You know, and I just don’t think people know enough. We don’t get enough information on it. We don’t have doctors who are educated. Even in my case, after the black box label was in place, I talked to so many doctors who were unaware. You know? They get this in the mail. They get updates. But you know, there’s just a complete unawareness. Some professions have a lot of responsibility, and you have to take it seriously because it’s people’s lives. So to me there’s no excuse that you don’t have time to read that, or you at least don’t have time if you can’t research it before, after a patient tells you to go and look it up. You know? That’s unacceptable and that’s unacceptable for physicians. I know in my profession I would be in a whole lot of trouble if I did that.
AM: So you mentioned people reaching out to you and saying that they identify with these symptoms and reactions. How do most people know your story, Shea’s story? Is it through television news exposure or the lawsuit that you are pursuing?
HM: I did a couple stories. I think being supported by a community of other people who have either themselves or family members have lived through similar circumstances. You know, I think a lot of times now with the Internet we’re able to connect with other people, mobilizing people. I mean, that is in fact why there is a black box warning because people were able to mobilize to go to the FDA to speak and share their stories.
AM: Were you part of that campaign?
HM: Yes. I was there.
AM: You testified before an FDA committee?
HM: Yeah, yeah, as to what happened to O’Shea. And I was fortunate enough to have a wonderful journalist out of Indianapolis follow the story and actually, you know, footage from the FDA and everything that went into that. Certainly, I was a very, very, very small piece of that. There’s victims who have been working on this for years and it’s quite a triumph what they did, and I was honored that they included me in their group and that they allowed me to tell my story, because it just doesn’t get enough — you know, it doesn’t get publicized enough. I don’t know if it’s — they think they’re going to incite fear. This is knowledge that we should all be entitled to. And I guess, you know, one of my main messages is you better educate yourself, you know, about your health care and about what you’re putting in your body because the chances are no one else is going to be looking out for that except for you. You know? And I just want to tell people, educate yourselves. Make sure you know — make sure you know what you’re taking. There’s so many wonderful websites now. Rxisk.org is a wonderful one where you can go in and put in any medication and there will be a list of the side effects, through the FDA, you know, side effects of the medications. And there will also be, in addition to that, if you want to look at, you know, self-reporting from other people. Again, when someone is suffering from an effect like this, the last thing on their mind is calling the FDA; they’re trying to get better. So, you know, a lot of these symptoms fall through the cracks. So it’s really important that all these advocacy agencies are out there, and I think rxisk.org is probably one of the best for looking up a medication and knowing what effects it can have on your body and your mind and making an educated decision as to whatever you’re suffering if the risk of taking that, you know — does that outweigh, you know, what you’re dealing with, and making a decision for yourself.
AM: And spell that URL.
HM: It’s rxisk.org.
HM: I know I talked about informed consent. That is what’s key here. Are patients being sat down before they’re put on an SSRI, before they’re being put on any type of drug, an antibiotic, an antipsychotic? You know, whatever, whatever – an antianxiety pill that people might think, oh, that’s nothing. You know what I mean? Just a little something to – are they being told the risk and the benefits? You know, we seem to have completely lost touch with informed consent. You know? And are families being involved in that? Because the people we live with and the people who interact with us on a daily basis often are the ones who can see these adverse effects, can see these side effects that the person experiencing them might know something’s wrong but not even be able to grasp it. I mean, are we providing that? Are physicians providing that on a consistent basis with all these drugs? And you know, it was amazing to me in my son’s case, by the time I had secured experts, but in regard to the issue with Levaquin, I had testified at the FDA. There had been black box warnings. There had been the validation of an – it’s called fluoroquinolone-associated disability, through the FDA, as a bona fide disability. I was shocked during my son’s case at how many doctors I called who had no clue that that was the case. “That could never,” “that drug would never do that.” Have you read the label? Have you read the label? Google it. It takes two seconds and it could save someone’s life, instead of saying, no, you know what, you need to go see a psychiatrist or you need – you know what I mean? Like, “it’s something else; it’s some underlying health issue.” And that’s what’s really getting missed in all of this and we’re losing lives because of it. We have a lot of people on a lot of medications. Doctors are practicing medicine, but it’s a two-way relationship, and when a patient has an issue, it needs to be taken into account and seriously.