HIV Survivor Fights for Others

Mark King  0:03  
You know I always say advocacy is driven by those with the most to lose, and we had the most to lose.

Terry Wilcox  0:10  
Today, author Mark King brings us his patient advocacy story that started when he was diagnosed with HIV in the 80s. In his upcoming book, he reflects on the power a community of patients, caregivers and advocates can have. He shares that story with us up next. Welcome to the patients rising podcast. I'm your host, Terry Wilcox, CEO of patients rising. I'm joined by my co host, who is still trying to figure out his Barbie Heimer sketch. He's byBob Goldberg, co founder of the Center for Medicine in the Public Interest. So what's the problem, Bob?

Bob Goldberg  0:46  
Well, you know you to make the transition to a real movie theater, it isn't the bathroom breaks, I can't put anything on pause. And, you know, I like getting those VAT sized, free refill, you know, Diet Cokes. But listen, we have no time for double features here. Because on the patient's rising podcast, we're spending our time talking about the latest health policy news in Washington DC, that impacts millions of Americans who live with chronic illness. On the lineup for today's show, insurance premiums could rise and 2024, putting even more cost burdens on patients. And we'll get into a new story that tries to understand why insurance denied patients so often could be something about AI and why more transparency into this process is desperately needed.

Terry Wilcox  1:37  
You can definitely say that. But first, we're talking to someone who has been advocating for patients for decades. Our guest Mark King tested HIV positive in 1985, and recalls the early years of the diagnosis and just how terrifying it was to live through the HIV and AIDS epidemic.

Mark King  1:56  
It was surreal. It was a scary every day. It's funny because when COVID came around a few years ago, there was a sense of familiarity of there's this thing, and we don't know how bad it's going to get. And having been through a situation where it got worse and worse and worse, to nightmarish levels. You know, that felt familiar to me. And so the way I tried to compare and contrast those two things is it's as if everyone who died of COVID died in your town, they all were right there. It was so surgical in its strike of gay man. Obviously, all sorts of populations were affected. But we certainly bore a bad brunt of it in the earliest years. And you know, what it was like, you know, it's funny, I've processed a lot of this, through my writing, which has been very therapeutic, right?

Bob Goldberg  2:56  
During those difficult times, there were incredible acts of compassion and courage.

Mark King  3:01  
But in many ways, it did reveal so much of our humanity in terms of who was pointing the finger and who was passing out meals, you know, and the beauty and generosity and bravery of so many people who stepped up, including a lot of people who were not gay men, who knew it was a moral imperative for them to do something. And so that's what it was like, it was scary every day. And then there were just these pockets of grace, pockets of beauty. Along the way.

Terry Wilcox  3:36  
Something else Mark is really proud of from those early days is how his community came together.

Mark King  3:41  
You know, I always say advocacy is driven by those with the most to lose, and we had the most to lose, and to watch the strength of that, during a debilitating time, was just beautiful and heroic and so inspirational. And again, it was a different kind of scene that I was involved in. Then I got more politically active a little later on in the 90s. But throughout the 80s, I was consumed with caregiving for my friends, and providing the kind of services that the organization I worked for, was engaged in. 

Terry Wilcox  4:20  
Well, Bob, he really hit the nail on the head, as they say when he talks about communities coming together. I mean, we still see that how much can happen when communities come together, whether it's, you know, small groups of rare disease patients or arthritis patients or cancer patients,

Bob Goldberg  4:39  
Everybody. Yeah, well, yeah. And to a certain extent, to a large extent, actually, the ACT UP aids movement defined and sort of set the stage and allowed for true patient advocacy, from the regulatory decision making, to access to medicines and what amazing is that he says early days Well, the apex of Aids was in early 1989 1990. So really we're talking about 30 years ago, and which is really sort of a blink of an eye when it comes to dealing with a with a crisis, which could have been really long standing. The other part of it, which I discussed with Mark offline is that the biggest contribution that the activism generated, in addition to all the caring that people needed, when there wasn't anything that you could do apart from caring for people with AIDS, until they passed away, was accelerated approval. Yes. And for those people who say, well, accelerated approval is not real approval, tell that to the AIDS activists tell them that they should have waited nine years for a drug that was approved in 18 months? 

Terry Wilcox  5:53  
Well, yeah. And Mark talked about how the patient community helped lead the charge for this push and accelerated approval, and getting safe and effective drugs to patients faster.

Mark King  6:03  
It was the first time that my generation realized, oh, they don't know. Oh, doctors, they don't know. They don't know anything. They don't know. They don't know any more than we do. We're reading the same papers. They are, you know, and so the the advocacy around how do we change clinical trials? How do we get drugs faster people, we, those of us who were involved in that sort of thing, the felt empowered and entitled to step into that fray and to say, here's a new design, try that, you know, and aside from just the NIH stuff, just kind of the very, on the ground, conversations between patients and doctors changed.

Bob Goldberg  6:42  
It really sort of laid the groundwork for what were called Community trials, there was a push back, say, No, we're not going to stick with randomized controlled trials, people are being actively treated, let's find out how these drugs actually change, not just the trajectory of the disease, but the quality of life. So again, laid the groundwork for the idea of real world evidence, which, again, some people object to is not being a gold standard, but tough, it's there. The other thing was, it wasn't just the patients, doctors basically had to take the lead from the people they were caring for, to find a way to fight this epidemic.

Mark King  7:23  
Suddenly, you're sitting across from a doctor who has no idea how to treat you or keep you from dying. But there are options. There's this clinical trial, what do you think of this drug? Would you like to try this, this is the side effects. And it became a collaboration between patient and doctor in a way that at least my generation had never seen before, doctors were all knowing you just did what they told you to. And that was that. So to have the ability to be involved in your own decision making process, I think that that set a template for all disease categories.

Terry Wilcox  7:59  
And this is something that we see a lot more today. I mean, I've always said that doctors and patients are great allies. And then if you bring in researchers and others, they're really the folks that everyone should be listening to.

Bob Goldberg  8:16  
Patients are leading the way, especially in the rare disease area, where, you know, there's no one size fits all approach to how the disease hits people and their families. So the activism, as well as the experience and approach to disease is something that Mark captures in his book, which is coming out in September called My Fabulous Disease, Chronicles of a Gay Survivor. It's wonderful and the talking to him, Terry, just you know, the guy has been to hell and back in his life a number of occasions. But his outlook, and he gave us a pocket of grace. In writing this book. It's a series of essays he wrote, To cope with his own experience and to help others. And it's a history of how to deal with disease, how to be an activist, how to be a patient advocate. And there are real important kernels of wisdom. And here's a taste of what you can expect from his essays.

Mark King  9:21  
It's funny, life is two things, life is extremely short. And life lasts a long time. Both of those things are true. There's always time to forgive. There's always time to change. There's always time to move directions. There's always time to understand better, and it's over in a blink of an eye. I think I say in that in that particular piece. You know, that enlightenment awaits. All we have to do is blink. It's just the blink of an eye. And you know, you hear it all the time. Oh, I can't believe I'm this age. I look in the mirror you know, oh my god. I felt 25 Well, my back doesn't feel 25. But a lot of the rest of you does. And I feel as if I can't believe I'm sitting here talking to you as this wizard and, you know, aid survivor, because it's so fast, it's so fast. And I want to gobble it all up. I want to gobble up life so much, you know, I, I know how precious it is. I know how quickly it goes, I know that we're gone in an instant. I know all of those things. And so I want to gobble it all up.

Terry Wilcox  10:35  
So now, Bob, you've read the book, what do you think?

Bob Goldberg  10:38  
We've had a lot of people on the show, and his writing and his attitude about life, his open heartedness. And his ability not to take himself too seriously, really shines through. So obviously, there's a lot you can learn from the book if you're a patient or caregiver. But even to understand how a life with disease is of high quality life, and we cannot begin to start again down that road of well, people with AIDS or cancer, you know, poor them, their life isn't worth living. Now, it's just the opposite. The appreciation for life, the desire to hold on the value of hope, which we've talked about, I mean, all of that shines through in this wonderful book. And it's pretty raunchy and funny in some segments, but incredibly moving and inspirational and others so you get a full measure of mark when you read the book, and can't recommend it highly enough.

Terry Wilcox  11:43  
Well, for all of our listeners who want to learn more about Mark's story, we'll have a link to his book in the show notes, which comes out on September 1.

Terry Wilcox  11:56  
This episode of the patient's rising podcast is brought to you by the patient rising helpline, the free service is a great way to get your questions answered about medical transportation, health insurance, even caregiving. All of these topics and more can be covered in a phone call or in an email to our helpline. Our navigators have handled issue after issue for patients and caregivers just like you. If you or someone you know has a health care question, challenge or issue, we are standing by ready to help to get in touch, leave us a voicemail or send us an email using the link in the show notes.

Terry Wilcox  12:32  
Before we go today, we wanted to talk about a recent article from Pro Publica titled, How often do health insurers say no to patients? No one knows. Well, from our conversations with patients, it seems like insurers say no, a lot. Now we'll put a link to the article in the show notes. But the big takeaway is without transparency, and we all know this, which is why that's one of our key words. We don't really know how often insurers are denying care. And there's little policy movement to bring this information to light. So what do you have if you don't have transparency? And I always get a little, you know, skeptical when people say, Oh, we don't need transparency. We don't you know, there's secrets or what? Well, patients need transparency. Like people need to know what they're paying for. You don't have to give trade secrets or contract secrets to have transparency on payment. You just don't.

Bob Goldberg  13:31  
I think there's a lot of denials, it varies by insurance company. I think Medicare inpatient claims and outpatient claims, they have the lowest percentage denial. I mean, there are some outliers that deny 80% of the claims. It's just

Terry Wilcox  13:46  
My favorite is when they retro actively deny a claim, like it's kind of been approved, and then it's not approved. We've had patients that that happens with has happened.

Bob Goldberg  13:58  
And here's the other thing, Terry, is that there was a study done, I think by change healthcare that found that 86% of denials are potentially avoidable. And what happens is that if there's a denial 65% of providers don't resubmit. This is a big issue.

Terry Wilcox  14:18  
Well, now Wendell Potter, who was a past podcast guest and very well known insurance whistleblower, he was quoted in the article and he said that denying care is a big part of an insurers business model, which we've known for years, especially since they know that less than 1% of denials will end up being appealed by patients less than 1%.

Bob Goldberg  14:38  
Yes, I know. I mean, look, a lot of the denials are a function of, you know, missing claims eligibility. People don't do pre certs, services isn't covered, but you see, you can find an excuse not to deny in that sweet spot of pre cert and service not covered. The other thing is that I would say, oh, only six to 7% of claims of medical necessity are denied. But the vast majority of those claims are generated by a very small percentage of the patients who are chronically ill. So, to Mr. Potter's point, you know, you know where the money is. And that's where you see the denials often kick in?

Terry Wilcox  15:21  
Well, in keeping in the theme of health insurance, more bad news is on the way for patients unfortunately. So as we look ahead to 2024 experts at Kaiser Family Foundation predicts that we could see a median premium increase of 6%. Now, insurers say it's due to price increases for medical care and prescription drugs. This is why prescription drugs are always on the I'm like, Look, if I keep going to the pharmacy counter, and getting, you know, quadruple markups. It's not because of prescription drugs, because you're charging too much for them.

Bob Goldberg  15:59  
Yeah, Terry, we've said it before. I'm gonna say it again. You know, we can use the tools of AI, real world evidence, patient experience, transparency, as our health plan heroes have done to actually provide people with cutting edge treatment that reduces the total cost of care without raising deductibles or premiums. We need to get creative, and we need to make sure that these tools are scalable, because they can bring huge cost savings to patients.

Terry Wilcox  16:39  
Now we have a link to both of these news articles in the show notes. Thank you for listening to today's episode of the patients rising podcast.

Bob Goldberg  16:46  
Yes, and we have more episodes on the way but we want to give you a quick heads up that we will be taking an August recess of our own here on the podcast. Don't worry, we'll be back in September. Catch up on the other podcasts that you haven't heard or replay your favorites. And in the meantime, always make sure to follow the podcast on your favorite podcast app. And we'll let you know when we return.

Terry Wilcox  17:11  
Until then, for Bob and everyone at patients rising. I'm Terry Wilcox, stay healthy.