UnitedHealth vs. Patients: NYC Man’s Battle to Get Lifesaving Drug Highlights Broken Health System

AMY GOODMAN: This is Democracy Now!, democracynow.org, The War and Peace Report. I’m Amy Goodman.

Luigi Mangione, the suspect in the shooting death of UnitedHealthcare CEO Brian Thompson, appeared in a federal court here in New York Thursday after being extradited from Pennsylvania, where he was arrested. Prior to the court appearance, Mangione was seen in Lower Manhattan being escorted from a helicopter by the FBI, by the New York Police Department and New York Mayor Eric Adams. He’s been charged with first-degree murder, second-degree murder as an act of terrorism for fatally shooting Thompson on the morning of December 4th as the CEO was walking to UnitedHealth’s annual investor conference.

A newly filed federal complaint has revealed new details about a notebook Mangione had at the time of his arrest. According to authorities, it, quote, “contained several handwritten pages that express hostility toward the health insurance industry and wealthy executives in particular.” In a separate manifesto, Luigi Mangione wrote, quote, “Frankly, these parasites simply had it coming. A reminder: the US has the #1 most expensive healthcare system in the world, yet we rank roughly #42 in life expectancy,” he wrote. According to investigators, Mangione had written the words “deny,” “defend” and “depose” on the bullet casings used in the assassination.

The killing of the UnitedHealthcare CEO has brought renewed attention to the practices of the health insurance industry, and especially UnitedHealth Group, which made $22 billion in profits last year.

We’re joined now by two guests here in New York. Elisabeth Benjamin is with us. She is vice president of health initiatives at the Community Service Society of New York. She’s co-founder of Health Care for All New York campaign. And Kevin Dwyer is with us. He’s a cystic fibrosis patient who’s written about his battle with UnitedHealthcare after he was denied lifesaving medicine.

You have — you’re a family of seven kids?

KEVIN DWYER: Yes, correct.

AMY GOODMAN: Four of you have cystic fibrosis, Kevin?

KEVIN DWYER: Correct, yes.

AMY GOODMAN: So, talk about what happened to you.

KEVIN DWYER: Well, in 2012, there was a new medication that came onto the market called Kalydeco. It was a game-changing medication for cystic fibrosis patients. Instead of just treating the symptoms of the disease, which is previously that’s all we had, it actually started to work at the root cause of cystic fibrosis and the defective gene. It was only for one specific mutation out of thousands of mutations for cystic fibrosis. I started to do research about the medication, about the specific gene, talked to my doctor. My sister then was — went and tried to get the medication.

AMY GOODMAN: And did she get it?

KEVIN DWYER: She got it, yes. I then went ahead with all the same information, because we have the same gene. And I was denied by UnitedHealthcare.

AMY GOODMAN: She also had UnitedHealthcare.

KEVIN DWYER: She had UnitedHealthcare, yes.

AMY GOODMAN: UnitedHealthcare approved her prescription.

KEVIN DWYER: Correct. They denied her at first, and then she had to go through the appeal process. And at the appeal process, she got approved for the medication.

AMY GOODMAN: Well, you’re looking very good now. I don’t know what that means.

KEVIN DWYER: Yes.

AMY GOODMAN: But so, explain what happened, because you were not doing well after you were denied.

KEVIN DWYER: No, I was not. I was at a point in my health where it was starting to decline, and it was declining rapidly. At the time, I was probably about 30% lung capacity. So, I —

AMY GOODMAN: You were put on a lung list?

KEVIN DWYER: Yes.

AMY GOODMAN: To get a new lung?

KEVIN DWYER: Yes, I was just about to be — we started having conversations about getting a lung transplant, a double lung transplant. So, the thought of getting this medication that could stop my decline was everything to me. And it was devastating when I got the denial, because my sister had just received the medication, and I had used all the exact same information that she had used.

AMY GOODMAN: To the same health insurance company.

KEVIN DWYER: To the same health insurance company, yes, UnitedHealthcare.

AMY GOODMAN: And she was doing well?

KEVIN DWYER: She was doing great. Her lung functions went up. She was clearing out the mucus in her lungs much easier, as I was going the opposite direction.

AMY GOODMAN: About to get on the lung transplant list.

KEVIN DWYER: Yes.

AMY GOODMAN: So, what did it take for this to turn around for you?

KEVIN DWYER: In the end — 

AMY GOODMAN: These days in America, you have to go to the doctor and a lawyer when you’re sick?

KEVIN DWYER: Absolutely, yes. It took a lot. I went to representatives. I went to doctors. I went to lawyers. I ended up finally going to health advocacy groups. The lawyer was helping, but in the end, the only thing that really got me the medication was it became a national story, and it was on The Today Show. And UnitedHealthcare just happened to change their tune and then gave me the medication.

AMY GOODMAN: But can you explain what happened? The Today Show called UnitedHealthcare and said, “We’re about to run this story”?

KEVIN DWYER: Correct, yes.

AMY GOODMAN: They had denied you right up until then.

KEVIN DWYER: Absolutely, yeah.

AMY GOODMAN: And when The Today Show called —

KEVIN DWYER: Yes.

AMY GOODMAN: — they then called you and said it’s going to be approved?

KEVIN DWYER: Uh…

AMY GOODMAN: If you don’t go on The Today Show?

KEVIN DWYER: Absolutely, yes. There was a caveat there. There was a — you know, the question that was posed to me was, “Do you want this medication, or do you want your interview to run on The Today Show?” So, I said, “Well, of course, I want the medication, but it can’t be contingent on an interview, because they have my interview. They’re going to do what they want to do.” And so, then there was negotiations, and then they finally came back and said, “OK, you can have it, and you can go on The Today Show.” And, you know, it’s —

AMY GOODMAN: So, this is what it takes, Elisabeth Benjamin? One of your steps was to go to Community Service Society. That’s where you met Elisabeth Benjamin?

KEVIN DWYER: That’s where — yes, yes. And honestly, when I went to her, after she got involved, the conversation started to change a little bit, but it still wasn’t — they still weren’t going to approve the medication. But at least she was able to get to some people that were able to maybe change the way they were looking at my case.

AMY GOODMAN: And, Elisabeth, you, too, are a lawyer. You have several advanced degrees in public health, and you have a law degree. This is what it takes in America today to not get on the lung transplant list?

ELISABETH BENJAMIN: It shouldn’t take this, but unfortunately it does. What we know from the research is — well, first of all, we don’t know very much at all, because there’s been a total abrogation by all government to actually require health insurance companies to report how many denials they issue. Some states do. Some states don’t. At the federal level, they’re required to capture this data, but, again, some states refuse to participate or have not participated, including, unfortunately, our own New York state, because it’s sort of required in the Affordable Care Act to report the number of denials and the reason for the denials, but that’s a law that’s not, basically, being honored in the breach.

So, what we do know, from the states that do participate, in this one sort of subset of, get it, 350 million claims — so that’s a pretty big subset — is that about 17% of all claims are denied. What we also know is the rates of denial are wildly random. In one state, it’s 2%. In another state, it’s 49%. So it’s completely random where you live and what’s going on in terms of the regulation of insurance carriers. And the other last sad thing from that same data set that we know is that less than 0.1% — so, 0.1 of 1% — of people appeal. So, the first thing I would always say to a patient is appeal, appeal, appeal, because, eventually, you will prevail, although poor Kevin had the hardest appeal I’ve ever seen.

AMY GOODMAN: But, eventually, you won’t necessarily win, right?

ELISABETH BENJAMIN: You won’t necessarily.