Cause of death: insurance company wanted to save $2K
February 26, 2019 8:25 AM   Subscribe

 
A teacher, a pastor, and a lawyer, who adopted 4 children with disabilities, and who fought for the rights of people with disabilities. And she died because her insurance company denied her request for an antibiotic.

We need a better health care system.
posted by suelac at 8:30 AM on February 26 [69 favorites]


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posted by Northbysomewhatcrazy at 8:35 AM on February 26


After living a year paying for medications at the same price I would copay in the United States I think it's more realistic to lay this at the feet of the pharmaceutical companies.

It's bullshit that insurance wouldn't cover it, but it's even more bullshit that it cost $2000 in the first place.
posted by Tell Me No Lies at 8:39 AM on February 26 [15 favorites]




Laura Chapin (@LauraChapin): A whole lot of people spend their lives arguing for their own limitations. Carrie Ann Lucas did the opposite. This photo she posted on FB from Great Sand Dunes National Park last year says it all.
posted by jazon at 8:43 AM on February 26 [8 favorites]


I wonder how many thousands of dollars the insurance had to pay for other medicines and "numerous stays in the intensive care unit". I think we can assume far more than $2000. And I'll bet the claims adjuster who denied the initial claim got high ratings from his company.
posted by oneswellfoop at 8:45 AM on February 26 [11 favorites]


United Health Care is an evil company run by horrible people.
posted by Sphinx at 9:07 AM on February 26 [15 favorites]


I was pretty skeptical about this rather vague and overwrought description of her illness:
In January of 2018 she got a cold which turned into a trach and lung infection. Her insurance company UnitedHealthcare, refused to pay for the one specific inhaled antibiotic that she really needed. She had to take a less effective drug and had a bad reaction to that drug. This created a cascade of problems, loss of function (including her speech). United Healthcare’s attempt to save $2,000 cost over $1 million in health care costs over the past year. This includes numerous hospitalizations, always involving the Intensive Care Unit which is par for the course for ventilator users.
But according to a 2017 review article on trachea and lung infections in children and adults, it turns out that in the case of some kinds of "ventilator-associated bacterial tracheobronchitis" (VABT) you do want an antibiotic that's inhaled or injected intravenously: "Two randomized controlled studies highlighted the benefit of an intravenous and/or nebulized antibiotic therapy during VABT in adults to reduce the risk of VABP onset." So it's entirely possible that an alternative treatment could have saved her life.
posted by crazy with stars at 9:09 AM on February 26 [6 favorites]


UHC's CEO was paid $66.13 million in compensation in 2014.
posted by Autumnheart at 9:11 AM on February 26 [23 favorites]


UHC's CEO was paid $66.13 million in compensation in 2014.

And will never, under any circumstances, ever suffer even a moment of discomfort as a consequence of any of this (nor, indeed, any of the likely thousands of similar cases) because, hey, Job Creator Ubermenschen! Yay America!
posted by aramaic at 9:17 AM on February 26 [12 favorites]


Passing over the rage and sadness, because what the fuck even is there to say, this seems like a journalism project we need: profiles of all the people and families who’ve been irreparably harmed by insurance companies. A giant database of them.

An accounting.
posted by schadenfrau at 9:17 AM on February 26 [27 favorites]


UHC's CEO was paid $66.13 million in compensation in 2014.

Note that $2,000 isn't even consequential enough to be included in that very specific number.
posted by Etrigan at 9:19 AM on February 26 [36 favorites]


From the original link, this is the sort of intelligent commentary you get when people with disabilities are doing the writing:

When disability is represented in media, it is mostly through the lenses of pity or inspiration—never through a human rights perspective. Most of the featured stories are about someone overcoming the odds despite having a disability. There is a toxic tendency of the struggles and injustices of people with disabilities being eradicated from the mainstream social justice and civil rights movements.

Carrie Ann Lucas should be remembered and honored because of all the activism and changes she achieved despite societal and systematic discrimination that attempted to impede her every step of the way.

Lucas started her career as a teacher before earning her master's in divinity to pursue a life as a pastor. Soon after, she faced unsound discrimination based on her disabilities when trying to adopt a child and this motivated her to become a lawyer. She founded Disabled Parents Rights, a nonprofit that’s “dedicated to combating discrimination that impacts parenting for parents with disabilities. [Disability Parents Rights] provides direct representation, advocacy, and technical assistance to disabled parents, as well as their advocates and attorneys.”


From two years ago:

When Denver police came to arrest Carrie Ann Lucas Thursday night, she refused to tell them how to operate her motorized wheelchair. She was not resisting arrest, she said, but she was not cooperating with her own detention either. She suggested officers Google the operating manual if they were stuck.

Fuck yeah.

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posted by mandolin conspiracy at 9:23 AM on February 26 [115 favorites]


I hate the fact that we don't have universal access to affordable healthcare in the United States like every other industrialized western nation. I also hate the fact that the United States effectively outsources industry regulation to plaintiffs. But I hope it's possible for her family to sue the living hell out of United Health Care.
posted by slkinsey at 9:23 AM on February 26 [8 favorites]


I'm an attorney in the disability field. I was never lucky enough to meet or work with Ms. Lucas, but the email went around at my work yesterday and I believe some of my colleagues knew her. This is a huge loss, for her, her family, and for disability advocacy.

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posted by bile and syntax at 9:31 AM on February 26 [19 favorites]



posted by tilde at 9:35 AM on February 26


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posted by ZeusHumms at 9:37 AM on February 26


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posted by GalaxieFiveHundred at 9:37 AM on February 26


We need a better health care system.

Even in a country with a better health care system, disability rights are still orthogonal to health care. In Alberta this week, a woman recovering from cancer surgery was banned from her local grocery store for failing to pack her bags fast enough. When she complained to the head office, they offered her a hundred bucks to keep quiet about it.

Nevertheless, she persisted.
posted by ricochet biscuit at 9:40 AM on February 26 [31 favorites]


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posted by Leeway at 9:52 AM on February 26


I am insured with United Health care. Last year, I had a whole bunch of hospital visits. UHC seemed to be covering pretty much everything, with no problems. Then, late in the year, providers started billing me for balances after UHC paid some of the bill. UHC said (repeatedly) that they had to get their 3rd-party negotiator Ensight, or Invision or some such thing, to talk to the provider again. This is a new thing, and it smells like bullshit. Somebody calculated that a profitable percentage of patients will just pay the extra bill, without calling the insurance company. Like when they used to reject claims routinely.
posted by Kirth Gerson at 9:57 AM on February 26 [14 favorites]


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posted by allthinky at 10:13 AM on February 26


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posted by epj at 10:14 AM on February 26


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posted by camyram at 10:26 AM on February 26


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posted by elizilla at 10:31 AM on February 26


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posted by Dressed to Kill at 10:44 AM on February 26


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posted by asperity at 10:58 AM on February 26


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posted by Foosnark at 11:07 AM on February 26


We flew to the fucking moon and yet we can't get people the drugs they need. I'm reading some sci-fi dystopia stuff and it just seems quaint.

Yeah, an interplanetary dystopia would be a cool thing to have, but we can't even get the correct drugs to sick people in our current planetary dystopia.

We pay taxes to blow up the parents of the next generation of people who want to blow us up (and isn't that fun for the Military Industrial Complex) and a disability rights advocate dies because she couldn't get the drugs she needs.

This is America.

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posted by East14thTaco at 11:10 AM on February 26 [2 favorites]


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I fucking hate this country sometimes.
posted by Two unicycles and some duct tape at 11:36 AM on February 26 [6 favorites]


I was pretty skeptical about this rather vague and overwrought description of her illness:
In January of 2018 she got a cold which turned into a trach and lung infection. Her insurance company UnitedHealthcare, refused to pay for the one specific inhaled antibiotic that she really needed. She had to take a less effective drug and had a bad reaction to that drug. This created a cascade of problems, loss of function (including her speech). United Healthcare’s attempt to save $2,000 cost over $1 million in health care costs over the past year. This includes numerous hospitalizations, always involving the Intensive Care Unit which is par for the course for ventilator users.


...Dang, I'm a critical reader, but when I hit the part about the multiple ICU admissions, I'd probably accept that the lady was extremely ill.

I'm not saying this to pick on you (I see you changed your mind after your own research) but to illustrate how we are trained to regard the chronically ill, particularly chronically ill women, as "overwrought" about the conditions of their own bodies.
posted by praemunire at 11:40 AM on February 26 [32 favorites]


United Healthcarenwould not let me go as a part D patient. I was too flummoxed to do anything. Now, it is open enrollment in my county, so, they are toast. See, I use no meds. They get money for nothing from me. Yeah, alright for a change I got a flu shot this year, and a giant premvar pneumovax last year. Done.
posted by Oyéah at 11:47 AM on February 26 [1 favorite]


Colorado's Lieutenant Governor, Dianne Primavera, who is a multiple times survivor of cancer and campaigned with Jared Polis on reforming health insurance problems and rising costs , signed a proclamation which declared that the 25th of February will now be known in Colorado as Carrie Ann Lucas day. (Sorry for the FB link, I couldn't find any others.)
posted by danielleh at 11:57 AM on February 26 [17 favorites]


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posted by Anonymous Function at 12:06 PM on February 26


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posted by carrioncomfort at 12:29 PM on February 26


When my insurance was UHC, I had to decide every month which of my medications I would refill that month, just because the copays were so high. I had to rank them from "will die horribly without" to "will feel rotten and completely incapable for 30 days without." And I knew I was damn lucky to get it, because my only other choice had a sky-high deductible and might-as-well-be-none coverage for DME.

Even now that I have insurance with affordable copays, I've never been able to convince myself that yes, I really can have all the pills. (Until they decide It's Just Not Covered You Prole And We Can Play Phone Tag Longer Than You Can So Neener.)
posted by The Underpants Monster at 12:59 PM on February 26 [4 favorites]


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posted by hydropsyche at 1:18 PM on February 26


[One deleted. Digging in on being skeptical, or on ways her grieving family might have been wrong, is a weird and unproductive tack in here; please drop it.]
posted by LobsterMitten (staff) at 1:32 PM on February 26 [16 favorites]


This is wretched, and why health care is pretty much my number one voting priority right now. It’s specifically what I am going to be asking about for 2020. It’s what keeps me up at night worrying.

(Also, there’s nothing like hearing this stuff about the insurance company your employer switched over to this January ! And hey, it’s not like my husband and I have chronic illnesses or anything!

Brb going to make an Ask about how to properly track health care spending.)
posted by PussKillian at 2:02 PM on February 26 [1 favorite]


We flew to the fucking moon and yet we can't get people the drugs they need.

That was when we believed in the power of government to achieve ambitious shared goals for the public good. These days that kind of thing is left to Elon Musk.
posted by Ralston McTodd at 2:50 PM on February 26 [7 favorites]


I'm really fucking sick of realizing just how famous people I know are when I see their obits here, its so weird now seeing her facebook profile now being used to organize the community around her. I am part of the first generation of children raised by parents in the global online community of disabled parents who came together and got organized on the internet, which is what I knew her through. There is a lot about her life that was just so fucking badass that isn't in this way too short obit. Like how she went through law school as a power chair user before becoming increasing deaf, and then increasingly blind, and then sued her law school for accommodations representing herself Pro se so effectively that not only won but got the active support of the deans in her career. Or just her entire incredibly badass law practice. Or how she was running for State Legislature in Colorado before all of this derailed her campaign.
But according to a 2017 review article on trachea and lung infections in children and adults, it turns out that in the case of some kinds of "ventilator-associated bacterial tracheobronchitis" (VABT) you do want an antibiotic that's inhaled or injected intravenously: "Two randomized controlled studies highlighted the benefit of an intravenous and/or nebulized antibiotic therapy during VABT in adults to reduce the risk of VABP onset." So it's entirely possible that an alternative treatment could have saved her life.
Armchair internet diagnostics like this will only ever be at best hilariously inept under the simplest of circumstances, but Carrie's incredibly complex care was made significantly more complicated by her allergies to a dizzying array of antibiotics in ways that you are clearly unaware of. There really was unambiguously only one formulation of one antibiotic that was appropriate to her circumstances, and it was denied.
posted by Blasdelb at 2:56 PM on February 26 [36 favorites]


Vote with your heart everybody.
PS, has Nancy Pelosi seen this?
posted by Conrad-Casserole at 5:37 PM on February 26


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posted by honey badger at 7:55 PM on February 26


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posted by Kattullus at 12:47 AM on February 27 [1 favorite]



And will never, under any circumstances, ever suffer even a moment of discomfort as a consequence of any of this


We don't have to believe this.
posted by AnhydrousLove at 4:08 AM on February 27


After living a year paying for medications at the same price I would copay in the United States I think it's more realistic to lay this at the feet of the pharmaceutical companies.

It's bullshit that insurance wouldn't cover it, but it's even more bullshit that it cost $2000 in the first place.
If we want to keep having antimicrobial therapies that keep working in the face of mounting resistance, we're going to need to pay for developing them. Given the extraordinary value that antimicrobials actually work bring, in this case not just Carrie's amazing life but also the 7 figures of medical costs associated with denying her the antibiotic she needed, it is easy to see how they are worth it.

We are still used to an economic model for cheap but mass marketed antibiotics that hasn't been functional for almost 40 years now if it ever was. However, it is difficult to generate a return on investment for new formulations of old antibiotics given the narrow patient populations that need them, hilariously difficult to make developing new permutations of existing antibiotic families or new resistance inhibitors work economically, and essentially impossible to develop fundamentally new families. The couple of Big Pharma companies that haven't laid off their antimicrobial development divisions, like all the others, are only still in this space out of a shockingly genuine sense of civic duty as well as a hope that governments and health care providers will eventually be forced to remove their heads from their asses and find ways to pay for sustainable solutions.

$2000 is a very reasonable price for the share of the formulary development and manufacturing that she represented. UHC just needed to pay for it like they were obligated to do, they didn't, and now she is dead.
posted by Blasdelb at 5:56 AM on February 27 [5 favorites]


You know, they don't specify the drug involved here, but I'm going to go out on a limb and guess that the company that sells it made billions of dollars last year and paid everyone in the C-suite more than a million dollars in total comp, the CEO probably in the double-digit millions.
posted by praemunire at 8:17 AM on February 27 [2 favorites]


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posted by one teak forest at 2:05 PM on February 27


I used to be a utilization reviewer on the hospital/facility side (behavioral health). My colleagues and I spent as much time as we could to scrape a few more days for people who were clearly not ready to move to the next level, but the insurance companies use metrics that push people out the door. It's a dirty business and I'm glad I'm out of it.
posted by catlet at 3:50 PM on February 28 [2 favorites]


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posted by introp at 9:02 PM on March 3


The Disability Visibility Project recently posted these two blog posts on Lucas.

Creating a Disabled Family: The Life of Carrie Ann Lucas:

You may have seen the tributes for Carrie Ann Lucas. They talk about her commitment to parents with disabilities and her political activism.

They inevitably veer into her family life: her adoption of four children with significant disabilities, how she battled personal health issues. Other tributes might mention the decision by United HealthCare that directly resulted in her death – along the way losing the ability to speak or type.

These tributes nearly always miss the essential facts of Carrie’s life: how she turned her home into a disability-enriched sanctuary for her family; how she provided free advice to all who asked; how she lived firmly by her principles no matter the cost; how she learned Morse Code in a few days as a new way to type into her computer after the medical denial caused the loss of use of her hands.


Carrie Ann Lucas Was a BAMF:

How is a health insurance company an abuser? Well if you’re a person with a disability or a significant chronic illness, this is all too easy. For nondisabled folks unfamiliar with this, health insurance is the largest non-negotiable in our lives and it has the power to dictate decisions that extend beyond the perimeter of an exam room. It can regulate where you live, who you live with, if you have a job, how much money you are allowed to save up, how much money you can earn.
posted by mandolin conspiracy at 1:53 PM on March 10 [3 favorites]


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