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A conversation with crowdfunder Luis Lang

Luis Lang talks candidly about his medical crisis, why he thinks Obamacare made things worse, and death threats he's received

Luis Lang speaks on Obamacare.

In my last column, I wrote about Luis Lang, a Republican South Carolinian who established a GoFundMe appeal to help with his medical bills and in the process drew the attention of not only potential donors – both  sympathetic and not so sympathetic – but also high-profile bloggers in the political space. Lang was already “trending” when I arranged a phone conversation with him on Wednesday.

Our conversation and a transcript of the conversation follows.

As you may have seen from my last column, Lang is uninsured. He has very low income, and serious eye problems. He’s been the subject of liberal scorn because he failed to sign up for coverage as he was supposed to, and because he mistakenly blames Obamacare for problems such as his own state’s failure to expand Medicaid.

Some aspects of our conversation struck me. Lang votes Republican, but he espouses an economic populism not so different from many single-payer advocates. He wants Medicare to buy diabetes test-strips at a steep discount. He’d like state governments out of the loop of insuring poor people in health reform.

Lang also noted that participating in a health insurance marketplace is a real problem for people like him, who have widely fluctuating income. He was very concerned that he might file his taxes and discover that he owes a ton of money because he guessed wrong about his income. This is especially complicated for him, because South Carolina rejected the Medicaid expansion for people who earn too little for the new marketplaces. This is a real problem.

Lang isn’t an expert on health policy. His views are somewhat contradictory, as most people’s are. In some respects, Lang hates ACA because it goes too far. In other ways, he hates it because it didn’t go far enough. I suspect his views are widely held among many Americans across the ideological spectrum who dislike political wrangling and who also dislike huge and messy incremental reforms.

The transcript:

Just a quick explanation that the “cloak and dagger” reference at the start of the call refers to the fact that Lang is now protecting his privacy by calling from a blocked number.

Lang: The cloak and dagger as far as asking for your number and blocking mine? We’ve already received one death threat.

Pollack: Wow. I’m sorry to hear that. I promise you I’m entirely legit. I’m just taking notes here. Given that it’s cloak and dagger, I should ask you whether it’s okay for me to record this for my notes.

Lang: Yeah. And before you do that, I want to ask you a question …

Pollack: Sure.

Lang: … because I saw that you are a professor, in Chicago … won’t hold that against you …

Pollack: [chuckles] Yeah.

Lang: But because of the fact that everything has been from the left side as far as liberal blogs crucifying me and I don’t know your blog … Is your blog considered liberal or conservative?

Pollack: I am a liberal.

Lang: Liberal. OK. I appreciate it as far as your honesty.

Pollack: Yeah, there’s no … I’m definitely … and if you Google me you would find that out very quickly. Although I like to think that I am courteous to all comers and in fact I should start by saying I’m sorry to hear of your medical difficulties.

Lang: Yes, and yes I do give you permission to record it.

Mounting care-related bills

Pollack: Thank you. I should say first of all, so you’ve raised more than $10,000 now. Sounds like …

Lang: Yes.

Pollack: Is that going to be enough to … What do you need medically?

Lang: They are looking at conservatively anywhere from $15,000 t0 $25,000 … it all depends. You also have to understand that I have not worked since December because of this. Without any help as far as from the government in any point or time. We’ve gone through our savings.

So on top of the medical bills that are going to be coming in, I already have (that’s not included in there) almost $10,000 of a hospital bill and also I have had dear friends that have loaned us money and I have to pay them back because it was, “Okay, what do I pay? Electricity or do I pay gas or do I pay, know …” We’ve been in that situation. Okay, I actually had to take out a title loan as far as when this all started and I missed my last payment where my car got repossessed …

Pollack: Oh, man, I’m sorry to hear that.

Lang: … and my neighbor was kind enough to loan me the money so I can get my truck back … although I can’t drive right but now but it’s frustrating and I’m sorry if I just go off on different things. I know you have certain questions that you want to ask me.

Pollack: I wanted … Please feel, whatever you want to share … By the way, so you say still … there’s a number of bills that both in terms of your medical care and in terms of just life bills that you have …

Lang: The medical bills as far as that’s the hospital, we’re making arrangements with them … but it’s just been like because I was the sole breadwinner as far as in the family. It’s just me and my wife. We don’t have kids. We have put away some savings every year because of my business is very erratic as far as my income. Doing handyman work during the winter months is the slowest part of the year. So during the year I put money away to carry us through the winter months. It’s almost like a squirrel puts nuts away for the winter time so they have something to eat during the winter.

Pollack: You have … I haven’t looked at, I mean I know there’s been a ton of stuff people have said that you do have a house that might potentially be helpful in paying your bills.

Lang: No, because there’s no equity.

Pollack: Oh.

Lang: And second of all, who’s going to give a loan to a person who doesn’t have an income?

Pollack: Good point.

Lang: Okay.

Pollack: I live in the south side of Chicago. I’m a professor. I have no complaints but the value about my house is down by about a third since the housing bubble burst and all my neighbors …

Lang: Ours did too.

Pollack: And all my neighbors are sort of in that situation. I’m not comparing myself to … I’m very blessed in my teaching job. It seems to me that everything that you’ve … One question, have you looked into … have you talked to somebody who knows about whatever government benefits you might be entitled … to like disability or something like that?

Lang: Yes, and I spent a good four weeks or more on the phone with anybody and everybody. Okay … state, federal, organizations, you name it, I’ve talked to them.

Pollack: And no help?

The story … in Lang’s words

Lang: There’s no help. What happened, and I’ll tell you from the beginning because the blog didn’t really do it justice as far as to my story because even though newspapers are supposed to be neutral but it was neutral but geared to the left. [Lang is referring to an interview with the Charlotte Observer.]

Pollack: In what respect?

Lang: Well because there’s a lot more to the story that wasn’t told.

Pollack: So what was left out?

Lang: The whole story is the following: In the summer of 2013, I had … my right eye went a little bit blurry so I went to a ophthalmologist, Dr. Edwards, the one who’s in the article.

Pollack: Yeah.

Lang: He is known for working with sliding scales. So I went to see him and he diagnosed me with what’s called diabetic retinopathy.

Pollack: Yes, I’m familiar with that.

Lang: Okay, so when he diagnosed me with it, I started as far as the injections of Avastin or Avasta something along those lines.

Pollack: Yeah, got you.

Lang: The generic version of it. What they call off-label.

Pollack: Yeah.

Lang: I was in once a month and when I went to sign in, they’d say okay, the first time it was $120 … paid it. As I was leaving the office it’s another $80 for the injection. Paid it. And every month I would go in for my injection and I would pay my bill.

Pollack: Did it help your eye by the way?

Lang: I went through three treatments. After the third treatment, Dr. Edwards goes “I’m going to have the girls here in the office help you fill out the paperwork because pharmaceutical companies often do … They give medication for people who have a different type of income.” So I filled it out and I was happy when I got approved because Avastin is almost $2,000 an injection.

Pollack: Yeah. Yeah.

Lang: So I filled it out. I got approved. I go for my fourth session and the bill went from $80 … and I was expecting it to go down … went up to over $600.

Pollack: Oh, wow.

Lang: And so I’m like “Okay, I need an explanation of this.” And what they told me at that moment was because the Affordable Healthcare Act going into effect,  he could no longer give me the discounts he was giving me. But I was okay with it because the three injections that I got was enough to clear my eye out.

Lang’s frustration with Obamacare

Pollack: I must say I’m … what is it about the Affordable Care Act that … I must say I’ve heard nothing in your story that is the Affordable Care Act that I know that would explain why ACA is making your situation worse.

Lang: Well, I’m getting to that. So my eyesight got great. Went over a year and a half, didn’t have a problem. My eyesight was perfect. February, I suffered a series of mini strokes. Not blood clot-type strokes. They were my vascular system spasming as far as in my brain.

Pollack: Like a TIA type thing?

Lang: It lasted over 10 days.

Pollack: Is that like a TIA type thing or?

Lang: I think they call it a CVA.

Pollack: Okay.

Lang: Cerebral vascular accident.

Pollack: Mm-hmm (affirmative).

Lang: And again, the only symptom I had was that my head … I had a headache that lasted over 10 days.

Pollack: Yeah.

Lang: So between that, between the stress … because obviously that’s like giving a person a death sentence … that you had strokes, and being told by the way there’s really nothing we can do about it. So between that and the stress it created … it caused you know, your blood pressure to go up because of stress … and anything that goes wacky in your body makes your sugar go crazy. And what had happened is that caused my diabetic retinopathy to come back with a vengeance.

Pollack: Yeah.

Lang: So I spoke to different people and they said you know, “why don’t sign up for the Affordable Healthcare Act?” So I did. It took me over three hours to do the application online because of my eyes. And back then my eyes were a whole hell of a lot better than they are now. So I get the results … denied.

Pollack: I don’t understand how you can be … What do you mean by denied?

Lang: I was denied.

Pollack: Denied what?

Lang: Denied coverage … under the Affordable Healthcare Act.

Pollack: I don’t understand.

Lang: I’m going to explain to you now why.

Pollack: Okay.

Lang: Because I couldn’t understand either. So the next day I spent over an hour and a half on the phone with a representative of it. And they told me that basically I was denied for two reasons: One … which is a first gap in the system … is I was out of enrollment, open enrollment time.

Pollack: Oh I see. You were trying to enroll and you didn’t have a qualifying life event. That’s what they told you.

Lang: I wasn’t during open enrollment.

Pollack: Yeah.

Lang: I did not qualify for their special enrollment program.

Pollack: So the problem was that you didn’t sign up during … you were required to sign up during the enrollment and you didn’t but you got sick during the off time and tried to enroll when you got sick … and that’s not a qualifying event.

Lang: Okay.

Pollack: I’m trying to understand. That’s basically what happened to you.

Lang: Well that’s part of it. The other part, that even if I would have … because open enrollment I was told ended February 15th and my hospital visit oddly enough was February 25th … oddly enough 10 days right after. Right when my headaches started was right when open enrollment ended but … that was part of it. Even if I would have signed up in January for it, I still would have been denied because my expected income this year is zero because of my eyes.

Pollack: But that’s not because of President of Obama, that’s because the state of South Carolina has chosen not to expand Medicaid. That has nothing to do with President Obama. That’s completely your state government.

Lang: Okay, but if you get to the beginning, the only reason my visits went from $80 that I was paying to over $610 that I could no longer afford was because the Affordable Healthcare Act went into place and what happened was …

Pollack: I don’t understand why that …

Lang: I’m going to explain to you that.

Pollack: Okay.

Lang: What happened … because I later on got some more information … was because of that, all the other insurance companies cut back on what they were paying doctors so he could no longer afford to give me discounts because what he would make on other payments that other insurance companies would pay full payment, he would use it help other people who didn’t and basically what he was charging me was the same thing like if I had Medicare. So if I had Medicaid, he would have only gotten paid $80 for the visit and that’s the only thing he was asking me to pay.

Pollack: Yeah, the … okay.

Lang: I can’t blame him. He’s been wonderful, but and again, I’ve done my little bit of research and I’ve heard about this over and over again of doctors that used to work on sliding scales that can no longer work on sliding scales.

Pollack: There’s no … Most of his patients are totally unaffected by the Affordable Care Act.

Lang: I have no idea. I don’t know as far as how many patients are or are not.

Pollack: Wait a minute, I’m sorry. Go ahead.

Lang: I have no idea how many are or are not.

Pollack: I think what’s …

Observations on health reform

Lang: What I’ve been hearing is that this has been happening to a lot of doctors across the country but … and understand something. It’s not that I’m against the Affordable Healthcare Act, my problem is that it wasn’t done properly. The ongoing joke that I always say, I think Microsoft wrote the Affordable Healthcare Act.

Pollack: Let me ask you … I’m sorry, go ahead.

Lang: Every time they launch a new Windows, it takes them six months to a year to fix all the bugs. It should have never been launched until it was properly thought out and shoved down our throats.

Pollack: Let me say a few things about that and get your reaction if I might.

Lang: Okay.

Pollack: First of all, you’re certainly right, I mean, that the launch of HealthCare.gov was obviously fucked up tremendously. Everyone across the spectrum.

Lang: And yes, you can use that language because it does not affect me whatsoever.

Pollack: Yes. I figured that you’ve heard it before.

I mean I wouldn’t deny that for a second and nobody else would either. I can tell you as someone who was very involved in the law and very proud of it, I was … you can imagine how humiliating it was for me and many other people that it was so screwed up in that.

However, almost everything that you’ve said so far really either has nothing to do with the law or it reflects the fact the word hasn’t gotten out about what you have to do as citizen to comply with the new law because you were …

Lang: Okay, to answer that …

Pollack: Hold on, hold on. You were required to have gotten health insurance coverage during the open enrollment period which you didn’t do … and by the way, you’re not alone in that. Many many people haven’t done that.

Lang: Oh I know that.

Pollack: Hold on. Hold on. You know, you cannot have a health insurance … that’s one thing. You cannot have a health insurance system where people sign up … you know … when they get sick.

Lang: I agree, 100 percent.

Pollack: The second thing is that your state … If you lived in a liberal state right now you would just be on Medicaid and they would be paying for your treatment right now. That’s just a fact about the red states have just … in South Carolina … 90 percent of the adults who are shut out of Medicaid live in the South.

Lang: Right.

Pollack: Every place else in the country, if you have an income of zero … almost every place else in the country … every place else in terms of where the people live … you know there are small states that haven’t done it. But certainly, here in Illinois … if you came to my office right now and explained your story we would solve your problem because we would sign you up for Medicaid and you’d get it … and people would sort of give you a little bit of a “Tsk Tsk” that you didn’t sign up during the enrollment period but we’d be able to help you through Medicaid.

Your state has decided not to do that. That has nothing to do with President Obama. It has nothing to do with anything about Obamacare. That is your governor and your state legislature that have done that.

Problems due to fluctuating income

Lang: Okay but there’s, okay. A couple of points. It’s not that I’m only blaming the federal government. I blame both the state and federal as far as … for certain things. But again as far as one of the gaps that I was talking about with the Affordable Healthcare Act. You … to sign up … you have to put down what you expect to make, correct?

Pollack: Mm-hmm (affirmative). Yeah.

Lang: If you’re off, you either have to pay money or fines at the end of the year, correct?

Pollack: Yeah, that’s right on April 15th. On April 15th you could either owe money or get a check back based on how different your prediction was from your earnings … that’s right.

Lang: Okay, now for a person like you who has a structured job you pretty much know what you’re going to make yearly, correct?

Pollack: Yep.

Lang: Okay, but a person like myself that I do handyman work and I was doing work for the banks and for HUD on their foreclosures … my income varies week by week, month by month. I could make, for example, I could make $2,000 one month and the following month make $200. So because my income fluctuates …

Pollack: Hold on one second. I just to see if someone’s at my door. Hold on.

Lang: Okay.

[Conversation off microphone]

Pollack: Sorry.

Lang: That’s okay. That’s okay. So because a  person like me whose income fluctuates, again it’s not set up properly. So we chose that okay, I’m not going to go and all of the sudden at the end of the year I’ve got this enormous amount that I have to pay … I’m not going to go through all that.

Second of all, if I were to get insurance on my own, as being self employed, the rates are so outrageous. The odd part about this was by next year, we were going to be actually moving and my job was going to be a little bit more structured where I had a little bit more control over it. So we WERE going to sign up for it because we said I’m 49. My wife is 55. We’ve always been very healthy. Whenever we have gone to the doctor we paid it out of pocket but …

Pollack: You say you’ve always been very healthy, you’ve also had … You have, you’re not so healthy in terms of some of your risk factors.

Lang: My diabetes I used to control. I used to take my sugar, insulin, you could buy over the counter. Again, we’ve always paid for everything.

Pollack: If there were no ACA and you tried to buy health insurance on the individual market given your personal characteristics, you would be really be in the pre … before 2010, you would have really gotten hammered based on the smoking and the diabetes and the related stuff. That’s just a fact about the way that health insurers do their thing.

Lang: Well and see the thing is, that has nothing to do with the Affordable Healthcare Act or the ACA.

Pollack: Well, the ACA basically outlawed charging people higher premiums based on their … or terminating people based on pre-existing conditions and risk factors. So the only thing that can ask you about is smoking and age.

Lang: [inaudible]

Pollack: What’s that?

Lang: Again, you’re part of the social security administration.

Pollack: No, no, I’m not part of the social security administration.

Lang: No, no, no. I’m not saying you work for them.

Pollack: No, I have nothing to do with … I’m sorry, I’ll let you finish your sentence.

Lang’s take on improving the system

Lang: Okay. If the government really wanted to get their heads out of their asses, and stop dealing, and stop going to the lobbyists and actually do what they’re elected to do … because quite honest with you, all politicians … whether it’s Republicans or Democrats … none of them do what they’re elected to do.

Pollack: What is that you would …

Lang: They all do what they want to … They’re like weathermen. They all tell you what you want to hear, but they never tell you the truth.

Pollack: What is it that you would do if you were … What would you want to see if it were up to you?

Lang: I’m going to tell you that. What they should be doing is reining in on all the bullshit spending that is done. For example, as far as if you’re on Medicare and you’re diabetic you get your testing supplies for free. Now you have all these companies that you see on TV. “Oh we’ll mail you out your testing supplies for free” and all this type of BS … But the little bit of research that I’ve been able to do … and this has been over the last several years but I never really got into it whole heartedly … but they’re billing Medicare for the maximum allotted.

Because I know there’s a range that they can bill. So they’re billing Medicare for the maximum allotted for a product that you can go down to Walmart and pay $9 for … which is a test strip. They’re billing Medicare for $70, $80, $90, $100 for the same little bottle and the idiots in Medicare are paying for it because they’re being lobbied and being given money by lobbyists from these companies.

Pollack: So there’s wasteful … so we should curb the wasteful spending. What would you do about …

Lang: Yes, and this is Democrat or Republican. It has nothing to do with politic … with parties.

Pollack: What would you do about helping people such as yourself?

Lang: Well, you know something … If they got rid of all the wasteful spending, there would be more than enough money as far as if they wanted to do a healthcare system and not have it be politically driven. They would have something that would work because quite honest with you the only reason that this was passed, it was because it was a political agenda. Not because it was well thought out.

Pollack: Let me ask you about your GoFundMe thing for a minute and then I’ve got a student that I’m going to have to go although maybe we can talk again. It is sort of … so you’ve gotten quite a combination of things where you’ve gotten blasted by a lot of people on that site …

Lang: [laughs]

Pollack: … and you’ve also had a lot of liberal people giving you money.

Lang: Yes, but if you notice most of them that do give $5 or $10 but then they crucify me in their comments.

Pollack: Well, you know … let me ask you, have you thought about some of the things that they’re saying?

Lang: I’m sorry, what was that?

Lang explains his crowdfunding effort

Pollack: Have you … is any of the things that they’re saying to you struck you as leading you to rethink your perspective at all?

Lang: No, actually what it shows me as far as that people have turned this into a political fight versus what I intended. And understand something, when I …. and I’ve been criticized for taking this public … but my reason for going public with this … The main reason was to call awareness to the gap or as the media calls, the Affordable Healthcare Act doughnut hole.

That was one of my goals as far as for taking this public was to call attention to it. Not politically based. Get the call attention so that maybe it starts a movement to correct the gap so that somebody else doesn’t have to go through what I went through.

Now the part that she [the reporter from the Charlotte Observer] put down, I’m a Republican. And again, I say that because I believe in full disclosure. I told her I said I’m Republican but I’m not party line. I’ll go for whatever is best. So I didn’t look at as far as this is, oh, I’m attacking a Democratic thing. That was not the case whatsoever. It was turned into that after the blog. It went viral.

The second thing I was hoping to accomplish is to find an organization or an ophthalmologist out there that would reach out and say “You know something, Mr. Lang … we want to help you.”

Pollack: Any luck with that?

Lang: I have. Again, it’s not …

Pollack: It’s in the works?

Lang: Some places have called but , you know, there’s still a lot of details to work out and everything.

Pollack: I hope …

Story is a viral sensation

Lang: As far as … the last resort was the GoFundMe and in fact, I set it up 23 days before I publicized it for the first time. So the article, and in fact, this thing has blown up to the point where the Charlotte Observer yesterday when I called her to let her know that I’ve had a death threat … I’ve already had a death threat on me …

Pollack: Jeez.

Lang: … where we’ve had the Lancaster Sheriff’s Department out here yesterday filing a report. We have the person’s phone number and name … because they called my house and threatened my life. So when I called her to let her know, she told me that the history of the newspaper they’ve never had a blog explode like this. That they’ve considered putting it in printed media.

Pollack: It’s the craziness of the …

Lang: They ran it last night. It was in this morning’s newspaper.

Pollack: I’ve got to go because I have this student. It does, from my point of view, I will tell you what hits … I’ll tell you one reason why what you wrote got such a blow back. So in fact I spend a lot of my time trying to help people in situations not so different from yours but with some similarities. We’ve been in this knife fight to get people covered for years and years and years and years and years.

Lang: And I understand that.

Pollack: And a lot of … And we thought, by the way, we got a lot of folks like you covered until the Supreme Court yanked away … essentially yanked away your Medicaid by giving your state government the opportunity to reject it. The new law, we never anticipated that people wouldn’t get access to Medicaid and that if you had an income … a really low income … and you were in a really conservative state, you’d get nothing. That was …

Lang: I believe it should have been either all or nothing. So again, if they would … I know you have a student waiting … if you want to do a call back, I’ll call back … but what I think should have been done is the Affordable Healthcare and Medicaid should have been combined in one. So that way, the states … take it out of the state’s hand. The money would not go to the states. It would all be in one fund so that conservative or liberal states could not play games and that way it would be mandatory and it would be fair for everybody. Because again, I blame state and federal governments for their own stupidity, their own big headedness.

Pollack: We would have actually loved to have done that. That was …

Lang: But when neither side wants to budge it doesn’t work.

Pollack: I should go but maybe we can talk again. I appreciate your openness in talking with me.

Lang: You have my email. I would love to look at your blog now that you’re quoting me on it. So when you send me an email later as far as when you want to talk some more, send me a link to your blog.

Pollack: Yeah, if you actually Google my name in quotes, and as you said … as given this conversation you won’t be surprised that you will find that I’m a liberal guy.

Lang: One last little thing.

Pollack: Okay.

Lang: One last thing. The only conservative media that has reached out to me … which is a very disappointing … is a local radio station. They’re putting me live tomorrow at 11:00. Everybody else I’m actually disappointed with my side. Okay. Email me when you want to talk some more and I’ll be more than glad to.

Pollack: By the way, whatever else happens bless you sir. I hope that your health problems that you’re able to deal with them effectively and I like, there were a bunch of people who gave you to in a spirit of generosity whatever their politics was and that was I admired most about the people who were in your GoFundMe thing. Anyway, it was great to talk to you.

Lang: My pleasure talking to you.

Harold Pollack is the Helen Ross Professor at the School of Social Service Administration. He is also Co-Director of The University of Chicago Crime Lab. He has published widely at the interface between poverty policy and public health. Pollack serves as a Fellow at the MacLean Center for Clinical Ethics at the University of Chicago, and as an Adjunct Fellow at the Century Foundation.


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