The Cure Chronicles: HIV with Michael Fletcher
Michael is a passionate HIV advocate who has dedicated the last 15 years of his career to raising awareness and education about HIV as a Peer Advocate at “The Horizon Program” in Maine. Michael’s role helps ensure people living with HIV in his rural community receive proper access to HIV treatment to prevent the disease from developing into AIDS. He is also a strong advocate for challenging HIV stigma.
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Jeff Galvin: Michael, thank you so much for joining us on the Cure Chronicles today.
Michael Fletcher: Thank you for having me.
Jeff Galvin: Our pleasure obviously. Look, you're involved in the Horizon Program, we'll get to that a little bit later but that's fascinating to me. But I like to know, you know, what's the backstory here? How did you come into the HIV community and then get involved with the Horizon Program? What motivated you to do that and what was your journey sort of into that space?
Michael Fletcher: Well, originally it was started in 1985, my brother was diagnosed with AIDS and it was really something the family had not heard of. We weren't educated on it at all. There were no medications for him to take. He died less than a year later.
Four years after that, my best friend and his partner were diagnosed with HIV. It was a shock. They got sick very fast, which turned into full-blown AIDS and I quit my job and moved in with them to care for them. There wasn't a lot of care available in those days, so they both died within a year. And I kind of left the HIV world.
I moved to South Florida and lived my life. And one day I got really sick. It was just like that. It was almost overnight. I was a powerhouse at work. One night, I just was so exhausted, I couldn't raise my head off my pillow. And it hit me. That's how it hit me. And I was diagnosed with full-blown AIDS. And the doctor said I had it for at least 10 years, where my numbers were. I wasn't able to even stand on my own at that time.
Jeff Galvin: Well, so it was sort of the mid-80s where your brother and the other two people that you cared for passed away, and so ten years… when was your diagnosis?
Michael Fletcher: My diagnosis was in 2002, so actually while I was taking care of them, I was most likely positive myself.
Jeff Galvin: That's almost 15 years, it sounds like, is that right?
Michael Fletcher: And my numbers were so low, and I mean, they're estimating guesstimating, but yeah, 10 to 15 years was the time.
Jeff Galvin: Yeah. That's amazing because you do hear a lot of different trajectories of HIV. There seems to be either a lot of randomness in there or maybe there's small genetic differences in people where it progresses more quickly or more slowly, but that's remarkable that you were able to live undiagnosed for 10 to 15 years with HIV. That's kind of miraculous in a way.
Michael Fletcher: I thought so.
Jeff Galvin: I've not heard that before. Yeah, I would not recommend that for anybody.
Michael Fletcher: No, absolutely not, get tested.
Jeff Galvin: Get tested. Yeah, we hear that a lot on the Cure Chronicles. Know your status and get the healthcare you need because then you'll be sitting here, you know, having a full life, right? As opposed to potentially dying from AIDS, right, which you've watched in the 80s.
And my understanding is that in the 80s, like you said, there was no cure. So people would show up with the symptoms of AIDS and they'd be gone shortly thereafter.
Michael Fletcher: Yes.
Jeff Galvin: And the earliest kind of treatments that were really effective were kind of mid-90s. You already had HIV at that point, you just didn't know it.
Michael Fletcher: Right.
Jeff Galvin: By 2002, then all the medications that you needed were broadly available, is that right?
Michael Fletcher: Yes.
Jeff Galvin: Did you know about that already, like when you-?
Michael Fletcher: I did not.
Jeff Galvin: When they told you that you had HIV, were you like “Uh oh, that’s it for me”?
Michael Fletcher: Yes. I knew I was going to be dead in a year. I thought my provider - because I never went to doctors, I was never sick a day in my life - was just being nice telling me she was going to patch me all up and I would go home and I would cry thinking, you know, I'm not going to be here long and I need to just get rid of things. And so I spent my nights sorting things for everybody and did give them away. And a few years later when I was really feeling good again, I wanted everything back. So I realized, I'm not going to die.
Jeff Galvin: Well, good. I hope they were understanding about that and happy for you and glad to give you this stuff back.
Michael Fletcher: It's a family joke.
Jeff Galvin: Yeah, that's so funny. Well, I mean, the whole story is a tough, challenging story, but that's quite a happy ending to it. I wonder how many people went through that same experience as you because this is the first time I've heard this on the Cure Chronicles that, you know, when people got diagnosed, they had no idea of how HIV treatment had progressed from the 80s, right?
Michael Fletcher: And I see people today like that. Still today. As a matter of fact, we had a patient come in very sick. They wondered why he was alive with all of his counts, but I told him, "You're not going to die. I'm telling you, you're not going to die." And I followed that guy, I called him to just give him uplifting conversation, and he pulled through. And it's been probably eight or nine months now. He's working. He's well. He looks great. And I told him, "The meds are crazy. They work. They work."
Jeff Galvin: You know what they called it in the mid-90s? The people that have been through the HIV epidemic. I don't know if you've heard this before, but they called it the Lazarus effect. The people that were covered with kaposi sarcoma, they gave them these new drugs and the sarcomas went away. They came back from the dead. So there was this period of time where it switched from a death sentence to a life sentence of taking antiretrovirals. But that was, you know, they could bring you back and yeah, a relatively normal life. And now the drugs have gotten even better, right? The side effects are lower. You take less pills. They used to, you know, back in the mid-90s, it was probably a handful of pills every day. Now it's one pill, you know, and you essentially have probably a similar life expectancy to everybody else.
Michael Fletcher: Everybody else. Funny that you say that because it just really makes me think back of where I started and where I am mentally today.
Jeff Galvin: Tell us about that. I think that's really interesting because you went from, you know, crying and sorting your stuff to, you know, doing something really fulfilling in the Horizon Project. It sounds like this is kind of core to your journey here and I think it's a fascinating aspect of your story.
Michael Fletcher: It is, and when I was first diagnosed and started and got right into care, nobody could know. I mean, back then, especially, even more so when my brother was sick, you could be thrown out of your apartment if you were found to have AIDS.
Jeff Galvin: So you went from that situation to, at least it wasn't you didn't have to hide it quite as much as your brother did, right? Like at least your doctor was like, "Hey, don't worry about it. It's like we got a treatment for it." But you still, you know, you didn't believe it at first, did you? But now you're in a totally different situation where you're telling people that they're gonna live.
Michael Fletcher: And I love that. I love that so much. You know, I have the best job. I can give food, produce, warm socks, gloves, and that we purchased with our 340B money. So it's really back to my story that we were talking about.
So I gradually came out of my shell, but it was just so important that nobody found out. That's usually anyone's, you know, "I don't want everybody to think I'm dirty or", you know, it's that mental issue that I had. I just felt so insecure, you know, with my disease.
So I moved to Maine, I think it was 2006. I'm a Floridian. I did not understand my partner wanting to move where it snowed and you had to shovel, so that was the first thing I said, "I don't shovel." So I came up here and it's so rural. I have never lived in such a rural place in my life. And I just happened to be at a function and met this woman, Nancy, and she talked to me. She worked here at the Horizon Program. She said she was a Peer Advocate. I didn't know what that was, but when she explained it, I thought that is perfect for me, you know, to just give what I didn't have. I wish I would have had a peer advocate, you know?
And it has just led to, I mean, me, I was a server in Orlando. And since I moved to Maine, I traveled to Washington several times, Montreal, Miami as an advocate to conferences where you can network with other people. And it's just, I can't believe this is me today. When I think of where I was sitting in a dark room crying, I think today that, wow.
Jeff Galvin: From hopelessness to sort of inspiration and fulfillment.
Michael Fletcher: Yeah, absolutely yes.
Jeff Galvin: And you're helping people along that journey to hasten that, right? You're that person that they meet in a lot of cases. It sounds like in rural Maine, maybe it's not as widespread the knowledge that you're imparting to me right now, right? Or that, you know, that I've looked through the Cure Chronicles, but you're actually helping to spread that in rural Maine, is that right? There are cases up there, and people are feeling desperate, and then…
Michael Fletcher: I'm very lucky. I have known most of our patients for 15 years, so we have a great rapport. We have dinners that they come to just to get out and not be isolated, and I have so much fun with every one of them. I mean, we're just, it's like we're in the same place, a piece of us, you know? We are all positive.
Jeff Galvin: Yeah, it's like a band of brothers and sisters, right? Yeah, and it makes a common challenge
Michael Fletcher: It makes a difference when you're comfortable, and we can be comfortable with each other.
Jeff Galvin: Well, that's interesting, so the comfort, right? So, you've created this great environment for all those folks, right? You're getting together and you have like community, you have support, you have faith in your future, you have sort of a positive attitude, another form of good positive, right? That's the point, is that you can be positive and positive, right? Because there is no reason to not go forward and live a great life.
Jeff Galvin: So, you've created all that, but you're also sort of alluding to the fact that there still is stigma out there, right? Because you've made like a bubble, you know, where it's like, "Oh, it's so comfortable." What's outside of that bubble like? You know, I think I see some of both, but what do you see like in rural Maine and what do you see globally in terms of that?
Michael Fletcher: I like how you put that, the bubble, and seriously, it really is, is just so comfortable.
Outside of that, stigma, the stigma has gotten better since the early days, because in the early days when you had, well, it was mostly AIDS then, you could tell. I mean, you knew like, "Wow, that person's really sick."
So, you were isolated, yeah, hardly left your house. You just didn't want people to see you, you didn't want people to know, and that's what you're really thinking about, rather than who cares what they know, you know? This is me.
Jeff Galvin: That's right, you are here. You’re saying, "Yeah, I'm HIV positive. I got diagnosed in 1992." You're fearless about it. I mean, you really are just like, "Okay, you don't like it? All right, we won’t hang out with you then."
Michael Fletcher: Yeah, exactly, because stigma, I avoid it. It's just unhealthy, it's real, not as bad, but especially in rural places that I live in, you know, in Maine, where transportation is our biggest problem. People live in very rural areas here, and that is the reason for our newsletter.
One of our employees, Tammy, she does the newsletter. We all chip in with articles and stuff, and she puts it all together, and it keeps everybody connected. If we're going to have a function, everybody knows about it. And we somehow get them rides to our functions. "Yeah, can you pick up so and so? Can you pick up…" It's like a little family.
Jeff Galvin: It actually reminds me of like rural religious organizations, right? You know that are really about community, right? Because think about how much you get out of that. I mean, isolation just in general, uh, is just not healthy, and it doesn't bring happiness, right? You know, we need connection.
And it sounds like you can, you know, in the early days, you can end up being in self-imposed isolation because you're so scared of the reality, right?
Michael Fletcher: The fear.
Jeff Galvin: And then you sort of came out of that, you know, fortunately, you know, you met a doctor right away who said, "No, it's not your brother's AIDS that you've got. Now we have treatments for this that are going to just put you right back to, you know, kind of a normal life. What do you want to do with the rest of your life?" And then you happen to have found something that you really enjoy, it sounds like.
I mean, I just see it - the smile on your face when you talk about getting together with these folks, helping them, bringing them clothes, food, whatever. I mean, that I get. You know, I think there's, in some ways, humans who have empathy get tremendous reward out of service.
Michael Fletcher: I sleep so good at night.
Jeff Galvin: Yeah, yeah.
Michael Fletcher: I do for that reason.
Jeff Galvin: Right, right. You don't need a Lamborghini to be satisfied, right?
Michael Fletcher: No, you don't.
Jeff Galvin: But connection and meaning to your life, an ability to improve other people's lives can actually be a source of great happiness. And I can just see it on your face, which is remarkable.
Michael Fletcher: This place makes you happy. It really does. We just all have. It's really… if I have to go to work, this is where I want to go to work, you know? I have as much fun here as I do my other activities outside of work, and because everybody here feels that way, it's like we're here to take care of you and make you happy. Which I take that on as a Peer Advocate. You know, you have to laugh, you have to find the good.
Jeff Galvin: That's interesting. Do you think the people that have been through an HIV diagnosis and feared for their lives maybe don't take happiness for granted like the rest of us, right dude?
Michael Fletcher: Me.
Jeff Galvin: Yeah, yeah. Isn't that interesting? It's like you're enjoying your happiness, like your happiness making you happy, like literally. You know, you come from this dark place and you haven't forgotten that dark place, and you know you're still benefiting, like the act of gratitude for whatever, right?
You said something to me before we started talking about, you know, God didn't give you HIV, but he gave you all these opportunities after that, right?
Michael Fletcher: He did.
Jeff Galvin: Yeah, and led you there, which I think is a really fascinating way to look at it. I'm not really religious, but I like that perspective of the idea that you think something for the good parts of your life, and you end up inventorying them. It's a psychologically beneficial thing, right? And so whether it was God did it or just fate, the point is, is that there's all these good things in your life that you don't take for granted that started, you know, on this journey from, uh, you know, the feeling like, "Okay, I got months…"
Michael Fletcher: My last leg.
Jeff Galvin: Yeah, now you're planning your retirement, you have to, right? Like, I don't say you're going to retire soon, but the point is, is like, you have to think about it like the rest of us now. You're like, "I'm out of the game, I'm giving away all my stuff," and then you're like, "Hey, I'm back in the game, give me back my stuff!"
Michael Fletcher: First of all, yes, it. This is a very happy place, it's a healthy place. I can't imagine retiring. I'm beyond retirement age, but I'm still, I just, I love it here, I do. Yeah, and the people I work with.
Jeff Galvin: I totally get it, and I think it boils down to, you know, sort of what we just talked about, the idea of service, right? You know, if you can make a positive contribution in the world, then you, in some ways, you realize, "Okay, I'm not just taking, taking, taking, taking, taking, right? Your life starts to have meaning that you're actually sort of like building things, you're benefiting others, you're creating, you know, that's a very positive thing. And I think seeing smiles on people's faces, for me at least, because I, you know, have the empathy gene, when you see a smile on somebody's face, it lifts your day, right?
You know, sometimes I just, you know, if somebody looks grumpy, you know, like they might be mad at me, I'll try to smile at them and see if I can get a smile out of them, and it's amazing how often you can, because it has something we can pass that good feeling, right?
Michael Fletcher: We have something in common. I do the same thing, I love to make a little old lady or man smile in the grocery store, you know, it just, what goes around comes around, it works for the good too, you know? Everybody always kind of uses it, "what goes around comes around", but know the goodness too. You give it out, it does come back.
Jeff Galvin: That's interesting, that's a really interesting point. I mean, it doesn't sound like it's that related to HIV, it's related to everything, right? And that is, you know, we're putting out stuff, right? We're putting out feelings, and the people around us react to those feelings and reflect them back. And so we do have the ability to have a great influence on our immediate environment just by our attitudes, right?
You know, so you have this stellar attitude, right? And you exude that, and you know, maybe not everybody's going to turn around and smile at you, but a high percentage do, right?
Michael Fletcher: Well, they'll think about it, at least.
Jeff Galvin: So, the Horizon program does everybody in Maine already know about it? Is this Horizon Program something national that you're involved in? You know, put a little bit more color on that because it sounds like a great organization and I bet you people would like to know more and know how to get in touch with it.
Michael Fletcher: Well, the Horizon Program was pretty much under the radar for many years, and we got a new manager, Jillian LaPlante. She is a person that has changed this clinic, has brought it to the best it can be, even though we want to be better, you know. Peer Advocate - my job - she made sense of it, where I really am a peer advocate now.
Before, I was doing just things that weren't as important as now. She made sure that I see every single patient every single day. It is just great. We have massage, acupuncture here available to our clients, you know, and as I said, all the food items that we can give. I mean, we really, really take care of our patients.
Jeff Galvin: So your patients, are they all HIV positive or do you have other patients?
Michael Fletcher: Yeah, you have to be HIV positive to come to our clinic.
Jeff Galvin: Okay. And so do you also dispense the medications as well? Can you be diagnosed by a doctor there and get on your meds, or you come here after your diagnosing on your meds and then this is a more support and well-being?
Michael Fletcher: No, we are working clinic. We have two providers, Megan Evans and Maia Pinksy. They are great, I mean, they are so caring. So they see patients every day, you know, and order their labs, prescribe, they are the brains, you know.
Jeff Galvin: Everybody needs some medical attention, right? You know how the body works and can diagnose things, and diagnose problems, right? The first problem being getting you on the right meds so that you can have a full lifespan, and then you're going to benefit from all of this other attention at the clinic as well in terms of well-being. It sounds like this is really holistic medicine for people who are HIV positive.
Michael Fletcher: We follow them; it's not like you're here, you're gone. It's like they're part of and they get along, they love it too. They know they have good care, our patients, I should say, not me.
Jeff Galvin: This sounds so good that it might attract people into the area. If you find out that Horizons exists and this community exists, you might go there as a place that is simpatico with your needs, your attitudes, and your desire for that type of environment and connection. Do you see any people that actually move into the area when they hear about your story and other people's stories, or is it more just coincidental that there are people in that area that need you?
Michael Fletcher: I think a little bit of both. When I moved here, I was just moving to Maine, to the capital.
Jeff Galvin: The capital of Maine?
Michael Fletcher: Yeah, that's another joke. It turned out to be very rural.
Jeff Galvin: They say if you ride through town and you blink, you might miss it, right?
Michael Fletcher: Augusta's a big city. It's just quiet, and I've learned to love it. I've always lived in big cities until I moved here, and I've really gotten used to it. I like it. You have more time with people than you do in a city because you're much busier in a city, you know, everybody's running all the time.
Jeff Galvin: Everything's trade-offs in life, finding sort of a balance point for you, and you're like, "No, I don't need the hustle bustle of the city, I don't need the materialism, I don't need that stuff. This has all the different things I need", and it's at the level of them that is consistent with your personality, and you're enjoying it. Even the small town feel of what is the biggest town in Maine turns out to be something that is right for you.
Michael Fletcher: One of the best places I've ever lived, really funny to me.
Jeff Galvin: Hopefully, we haven't insulted too many people in New York City. I'm just kidding. That might be right for other people, right?
Michael Fletcher: I love New York too. I love it for a weekend.
Jeff Galvin: That's true.
Michael Fletcher: I notice sometimes I like to step back and just look around me, just to see what's going on. Sometimes I'll be in the waiting room, and I just noticed our new PSR, the person that greets, schedules, Aniela, and right away you see people light up when they walk to her window. You know, and then it just keeps going from there.
But in my job, we have a room that we go into to talk where they can talk about anything or ask anything that they want to. So, of course, there's plenty of privacy, and it's not all laughing all day. You know, it's very serious, and sometimes people really do have issues that we busy ourselves taking care of, you know, housing is just a lot, homelessness, which is heartbreaking. I hate to see anybody homeless.
Jeff Galvin: Especially in Maine, you know?
Michael Fletcher: Yes.
Jeff Galvin: It's very difficult to survive a winter up there homeless. So, I guess you have to connect them with some sort of shelter, right?
Michael Fletcher: Yes. Make sure they eat.
Jeff Galvin: Make sure they eat, of course. Get other medicines, right? The thing is not just antiretrovirals. Every human being occasionally needs medicine, you know, cough syrup for a cold or whatever.
Michael Fletcher: Isn't that true?
Jeff Galvin: Isn't it true? Yeah, but you're doing all those little things and you know they're getting some opportunity to just talk openly with somebody that understands and cares about what they're going through…
Michael Fletcher: The good and the bad, yes.
Jeff Galvin: …who has been on the roller coaster, right? You know, the low lows and now at a really positive place and able to share that with others.
Michael Fletcher: Yes.
Jeff Galvin: That's terrific. Yeah, I think... Please, if you have something to add to that, I would love to hear. I'm thinking that's quite a nice story
Michael Fletcher: And I think that's why every day is just so nice because I mean, how can you not want to help people? If you help people, it makes you feel good, is what I'm trying to say, I guess. That's why I said, "I sleep good" because you just, you know, you give everything you can give to make somebody happy and that'll make you very happy too, you know?
It does me. I am pretty known for my smile around here. It's kind of plastered on there most of the time, but it's because I just love being here with the people that I've been around for so many years. You know, part of the family.
Jeff Galvin: Having met you, my thought is next time I'm depressed, I'm giving you a call. That'll probably brighten me right up. Like, you know, it's like everybody goes through that, right?
Michael Fletcher: Everybody, yes. Everybody does.
Jeff Galvin: Everybody has to meet a positive person who, you know, you don't have to have HIV to have ups and downs in your life, be depressed for that matter.
Jeff Galvin: It's really wonderful what your organization is doing for the HIV community to make sure that they're getting all the attention they need up there and that you're also, it sounds like you're going out to other places and being an advocate as well, going to conferences in Montreal and DC, you were mentioning. So, you know, you're spreading some of that experience and the philosophies and strategies, tactics, successes, whatever it sounds like. And do people like you trade in information when you get out to those conferences?
Michael Fletcher: A lot of networking. That's the best. That's the most fun of it, you know? It's networking with other peer advocates from around the country. Yeah, I just, I love that and you learn. I mean, where you really learn the most is at conferences.
Jeff Galvin: Well, fantastic. I mean, it's an uplifting story from hopelessness to joy, you know? It's a story you hear surprisingly often in the HIV diagnosed community. But I think that you cannot tell that arc enough so that people don't lose hope and also that they understand that people are living with HIV with very little consequences. You're here after thinking, you know, you can't tell anybody. My brother would have lost his apartment if he'd mentioned it, right? And you're here like, you know, on the internet and we found you, so obviously you've been open about it before, right? So, that's, yeah, that's right.
And if the whole world could be that way, right, and what's the only thing they need to understand is that you're just like anybody else, right? And your HIV is not contagious whatsoever because you're controlled on antiretrovirals. So, you're no danger to anybody else…
Michael Fletcher: Nope, you equals you.
Jeff Galvin: …and any type of job, and nobody has to worry about that. And the more they accept you as just another person, the more they can benefit from that smile.
Michael Fletcher: Well, you know, this is the first time actually I'm not really all out there. This is the first time I've ever done anything like this. I asked permission to print a story, an article for our newsletter that was in the Chronicle. I emailed her and I told her a little bit of my story which I just don't know why, I just felt like it, and I was explaining to her how important it was, and that's how it started.
She was like, "Would you be interested in doing a..." I was like, "Wow, I never did that." "Yeah, yeah."
So yeah, I'm not really all out there, but here we go.
Jeff Galvin: Wow. I gotta say, we're honored to be at your national coming out party. Long overdue, and you know from all the Cure Chronicles that I've seen, you know, for the people that don't accept that, hey, all right, who cares?
And for the people that have empathy, for the people that are even sharing that challenge of being diagnosed, this is a really valuable thing to connect, you know, as human beings to one another, and I love it. I love the story. Thank you so much for doing this.
Michael Fletcher: Thank you. Yeah, I'm so happy I got to do this. I really am.
Jeff Galvin: Oh, well, that's really nice of you. I'm glad it was a good experience for you, and it was certainly informative for me. You know, I learned some things, yeah, some additional things, and I got a chance to talk about a lot of things that I care about. This whole idea of just human to human connection, empathy, spreading joy, receiving joy, having gratitude for the good things in our life, I mean, I just think that just applies to everybody, and it's amazing.
Michael Fletcher: I do too. Thanks.
Jeff Galvin: Yeah, it's amazing how often that whole theme comes up in conversations with people just like you. So yeah.
Michael Fletcher: Thank you. Thank you.