Nataline a Year Later: Even More Disturbing News

About this time last year, we reported on the sad case of Nataline Sarkisyan. Our post on December 21, 2007, began:

"The family of a 17-year-old girl who died hours after her health insurer reversed its previous decision and said it would pay for a liver transplant planned to sue CIGNA HealthCare, their attorney said Friday."

And it appears that this is, indeed, coming to pass:

"An insurance company that initially refused to pay for a liver transplant for a 17-year-old Northridge girl who died in a hospital should face criminal charges and pay civil damages, an attorney for the girl's family said Friday."

Lead attorney Mark Geragos went on to rant that Cigna HealthCare "literally, maliciously killed" Nataline Sarkisyan."

Well, to be fair, that's what he's paid to say, even if it lacks actual, you know, truth:

"What is often misunderstood is that most health benefit plans, whether public or private, do not cover unproven and experimental treatment related to transplants or other treatments."

Those who doubt that "public" benefit plans withhhold such vital services need only peruse Bob's post on Sabrina Holloway.

And, in fact, Cigna went out of its way to justify its refusal to cover such an experimental procedure. Unfortunately, they did cave, and agreed to pay for the risky surgery, which ultimately failed to keep poor Nataline alive.

As regular reader Matt H points out, that was really Cigna's biggest mistake:

"Cigna should have stuck to the contract. I bet they will have to pay a settlement now because of their change of mind."

That sounds about right:

Had they simply stuck to their guns in the first place, the outcome wouldn't have changed (Nataline wouldn't have survived), but they also would have a compelling defense. As it stands, by backing down in the name of PR, they face an uphill battle. My guess is that the case will be based on the simple question of timing: if Cigna had agreed to cover the surgery immediately, the argument will go, then Nataline would surely have survived. By "dithering" (i.e. actually following the correct process) Cigna reduced her chances of survival.

We'll never know, obviously, whether that would have been the case, but I think that Cigna erred in succumbing to public pressure. Had they stood their ground, such a lawsuit likely would have had little chance of success. As it stands, I think Cigna will be paying out quite a few more dollars.

If there's any silver lining, it's that perhaps other carriers will learn the correct lesson from this unfortunate event.

[Hat Tip: Reader Matt H]

UPDATE: In the comments, Chad asks a very good question:

"Why is there no condemnation for the doctors and hospital that withheld this supposedly vital, lifesaving treatment for want of payment?"

Indeed.

I made a similar observation in my original post last year:

"(T)he actual choice belonged solely to the parents and the provider."

This is a Toughie

[Welcome Industry Radar readers!]

Perhaps you've heard this:
 

"The family of a 17-year-old girl who died hours after her health insurer reversed its previous decision and said it would pay for a liver transplant planned to sue CIGNA HealthCare, their attorney said Friday."

As the parent of both a 20 year old and a 16 year old, my heart goes out to these parents. Having known others who've lost a child, there are no adequate words of consolation.

But their insurance company didn't kill her.

The harsh reality is that the insurer can only promise to pay for (part of) a procedure. Whether or not a given procedure is actually performed is up to the patient (or, in this case, the parents of the patient) and the health care providers. The insurer has no say in whether or not a transplant (for example) takes place.

Yes, this is hard.

And yes, there will be those who fault "the system:" the health care providers who want to be paid for their efforts (and to cover their malpractice premiums), the "heartless" insurance company that had misgivings about paying for the procedure.

But the actual choice belonged solely to the parents and the provider.

Nataline (the 17 year old at the heart of this tragedy) apparently received a bone marrow transplant from her brother. Did Cigna (the insurer) pay for this? Was it considered experimental? We just don't know.

And we don't know the particulars of the liver transplant issue, either. Many policies now limit such procedures to specific "centers of excellence," for example. Was this the case here? Again, we just don't know.
 

At the last minute, Cigna rethought their decision and made an exception for Nataline. And once again, we don't know why (although we can guess). Insurers make these decisions every day. It's called risk assessment and management, and it goes to the heart of the matter. Absent real data to support a procedure's efficacy, the carrier is bound - by contract - to deny payment. Yes, this is difficult, and yes, it is painful, but it is, in the end, reality.
 

As the company pointed out, there was little to suggest that the procedure would have helped in any case; we'll obviously never know. What we do know is that, despite the rhetoric and the pain, the insurance company didn't kill Nataline. The folks who refused to treat her or to have her treated, regardless of payment, did.
 

ADDENDUM: In rereading this story, I realized that I had missed some key points. None of them change my conclusion, but they do perhaps explain a little more why Cigna may have balked at paying for the additional procedure (liver transplant).
 

For starters, Nataline suffered from leukemia, a type of blood cancer. In an attempt to treat it, she received a bone marrow transplant from her brother. Unfortunately, she subsequently developed complications from this procedure, resulting in liver failure. Things went downhill from there; in fact, she was in a "vegetative state" since shortly after Thanksgiving. After researching this for quite a while, I couldn't find anything that indicated one way or the other whether folks in this condition are considered good risks for such a procedure.
 

Bob pointed out to me that, if she had had the transplant, the doctors involved admitted that "patients in similar situations who undergo transplants have a six-month survival rate of about 65 percent." That's not particularly good odds; we also don't know whether or not she was physically "up" for such a procedure. Perhaps that information will come to light.
 

Finally, lest those who would argue that the insurer's greed contributed (or caused) Nataline's death, and that a government-run system would have saved her life, I refer you here.
 

MORE: Attorney (and CPCU) Brad Ford has some interesting insights into this tragic situation. Money quote: "I don't believe it was unreasonable to have a 2nd opinion before spending an enormous amount of money on a treatment that may not work."
 

UPDATE: We've received some additional information from Cigna.

It's the Context, Stupid (Nataline's Story, Updated)

In a tragic, though probably unavoidable, turn of events, a young lady died. She was a daughter, a friend, a student. And that's overwhelmingly sad.

Now, lawyers and activists are looking to turn this tragedy to their own ends, motivated by greed and power. And that, too, is overwhelmingly sad:

I received an email yesterday from a group called "Americans United for Change," who claim that "(t)hrough aggressive earned and paid media outreach, grassroots and online organizing ... has challenged the far right conservative voices and ideas that for too long have been mistaken for mainstream American values."

Ahem.

So personal responsibility, the desire to keep more of one's own hard-earned money, and freedom of choice are simply talking points for the right-wing, and not true American values? Okay.

In the event, the email breathlessly quotes an L A Times piece that avers "Cigna employees, looking down into the atrium lobby from a balcony above, began heckling her, she said, with one of them giving her 'the finger.'" What a reprehensible, inexcusable thing to do. Regular readers know from our on-going series on Stupid Carrier Tricks that we hold no truck for shenanigans by any insurer, and this would be at the top of that list.

But:

Something about the wording rang false, and having seen how the press mismanaged the original story, I decided to re-connect with the Cigna folks to see if there wasn't a bit of, well, context missing. And indeed there was.

The first thing to understand is that, if anyone "killed" Nataline, it was her doctors and the hospital that refused to treat her without being paid. Where was their compassion? Surely a few dollars should have been no impediment to saving a young girl's life. Perhaps it was because this was, by their own admission, experimental surgery - one wonders if their malpractice carrier put the kibosh on it. After all, experimental procedures are generally and routinely denied in all health care financing scenarios (including the MVNHS©).

The other problem with that scenario is that, in this case, Cigna had an ASO (Administrative Services Only) contract with Nataline's father's employer. That is, they were contractually bound by the employer to pay for only those items which the employer had agreed (in advance) would be covered. Again, experimental surgeries would have been near the top of the "no" list.

So we can see that Cigna did not, in fact, "kill" Nataline. But did they, or one or more of their employees, "flip the bird" at her grieving mother?

Yes, one employee did.

From the story currently making the rounds, one is left with the impression that this was an unprovoked, heartless and insensitive reaction aimed directly at a mother who'd recently lost her daughter. Perhaps, though, there was a bit more to this story than what we read in the paper?

I spoke this morning with a gentleman at Cigna who was actually in the lobby that morning, and who actually met with the group of people who had come to protest. What the L A Times story conveniently omits is that Mrs Sarkisyan was accompanied by a group of some 35 or so nurses with placards and loud voices, who descended on Cigna's headquarters. Of course, people are entitled to protest what they see as wrong, but this was a place of business, not a public forum, and so security was called in to control the crowd. Curious Cigna employees looked down from the atrium to see what was going on, and were met with shouts taunting "what's it like to work for a company that kills children?"

Apparently, a few minutes of this was more than enough for one employee, who (unprofessionally but understandably) invoked the obscene gesture. Did Mrs Sarkisyan see it? Probably. Was it directed at her"? Who knows, but she was not, in fact, an innocent bystander. So why is she suing Cigna for this singular event, and why, one year later, is it suddenly "news?"

Because her original case was tossed out, and the only bone which the judge could throw her was this claim of emotional distress. It's a win-win for the lawyers and activists: regardless of whether she prevails, this has rekindled the controversy and gotten Mr Geragos and the "Americans for Change" folks free publicity. Lost in the hubbub is the fact that Cigna had no financial stake in the original claim denial, and the providers who skimped on Nataline's care are held unaccountable.

Truly a sad coda to a tragic story.

[Thanks to Cigna's Chris Curran for his time and cooperation]

CIGNA & Nataline: A Broader Perspective

The Industry Radar has compiled an impressive round-up of posts and perspectives from around the blogoshere.

It's a well-balanced, comprehensive look at a no-win situation.

Recommended.

UPDATE/BREAKING: My contact at Cigna just emailed me about a new statement, just posted, from Dr. Jeffrey Kang (their CMO).

In it, Dr Kang seeks to clarify three issues about the case:

■ Cigna's role. This is crucial to the whole discussion. It appears that the group plan under which Nataline and her family were insured was a self-funded (ERISA) plan. As Bob has pointed out to me "(t)he plan sponsor cannot in any way obligate the reinsurance carrier to fund a claim. It would appear that Cigna's role in this matter was more of a consulting role than one as a front line carrier. Cigna could have authorized payment of the claim and the plan sponsor could have still refused to cover the transplant. Or, the plan sponsor could have authorized the benefit and Cigna refused to cover it under their reinsurance policy.

In other words, Cigna is pretty much removed from the decision on paying the claim as far as Nataline's family is concerned. Cigna is not their carrier, they are the reinsurer for the employer loss fund."

■ How these decisions are made. We've already touched on this issue, including the use of outside sources. What's new in this release is that it appears that Cigna consulted with three such experts (not two, as originally reported).

■ Why they offered to pay anyway. This is also key: Nataline's doctors still had the final say (which puts the lie to those that claim the carrier withheld treatment; that's always been specious), and Cigna was willing to pay if the providers decided (against overwhelming medical evidence) to go ahead.

I'm still not convinced that this was wise, but I also understand the humanity involved in the decision.

By all means, please read it yourself (available in .doc form here).

Update on Other Disturbing News?

[Welcome Industry Radar readers!]

Hank’s recent article about the Caitlin Jackson case mentioned Nataline Sarkisyan. Which raises a question: whatever happened to the lawsuit that celebrity attorney Mark Geragos vowed to file against CIGNA in the Nataline Sarkisyan case? I have been unable to find any current news of it on the internet, either under “Nataline Sarkisyan” or at Geragos’ own website. The news articles seem to have stopped in January 2008. Why? Anyone know?

Geragos’ website is here

The only reference to Nataline Sarkisyan (scroll down) is a copy of a newspaper article dated December 21, 2007. No updates on the Sarkisyan case have been posted to Geragos’ website since that time.

And here is a link to an editorial published January 11 in the Wall Street Journal that contains a summary of the case as it was only then beginning to be understood.

But even this editorial is now almost 7 months old. Does anyone know whether the threatened lawsuit against CIGNA is, or will be, proceeding?

More on Nataline...

[Welcome CraigsList and California Medicine Man readers!]

If you're just tuning in, a teenager in California died recently, and there is quite a controversy surrounding the circumstances. The biggest problem so far is the lack of adequate information; while the parents are free to cast whatever accusations they want, the insurer (Cigna) is constrained by HIPAA (as well as the pending litigation).

The issue is whether Cigna "killed" Nataline.

Bloggers and commenters on both sides have weighed in, but with only one side's take on the matter, it's difficult to really understand what happened. In an effort to clarify some of the issues, I contacted Cigna. I introduced myself, explained what we were doing, and asked some questions to help get a better picture. Although I knew that I was most likely to get a "Thanks, but we can't comment on pending litigation," I figured it was worth the effort. And sure enough, my first response basically echoed that demurral. I was disappointed, but not surprised.

What did surprise me was a follow-up email sent a few hours later, which included an email that the President and CMO of Cigna had sent to employees. It explained a few facts that had not been available before. Rather than post the whole thing (it's pretty long), I'll excerpt the relevant pieces for comment. The full text is here. Here are the relevant passages:

"Transplants are an enormously complex and emotional societal issue, in particular because of the scarcity of organs and the experimental and unproven nature of some of the treatments involved. In all circumstances, a completely independent national organization controls the allocation of organs for transplant based on a number of important considerations independent of any decision involving insurance coverage.

What is often misunderstood is that most health benefit plans, whether public or private, do not cover unproven and experimental treatment related to transplants or other treatments...At CIGNA, we facilitate payment for more than 90% of all requested transplants and specifically more than 90% of the liver transplant requests made to us.“

In other words, it’s not the “greedy corporate culture” that others might have one believe, but a rigorous and medically-sound process designed to maximize the potential for a successful operation.

“In this case, rather than going through our standard method of appeal, we went directly to not one, but two, independent experts in the field who agreed that the procedure in question, given the patient’s particular circumstances, would not have been an effective or appropriate treatment.“

This tracks with what we already know from the physicians involved on Nataline’s end, and actually goes above and beyond the SOP. There was apparently no reluctance to authorize based on “bean counting” mentality.

“Based on the unique circumstances of this situation, and although it was outside the scope of the plan’s coverage and despite the lack of medical evidence regarding the effectiveness of such treatment, CIGNA decided to make an exception.“

One may argue under what rationale that exception was made (I’m personally sure that public scrutiny probably paid a part), the fact is that companies do make these kinds of exceptions when warranted. In fact, I can speak from personal experience in that regard.

The bottom line here is that, absent more facts than have thus far made it into the public discourse, folks decrying the “heinous attitude” of carriers exhibit much wind and fury, but precious little insight. All we really know for sure is that two parents are grieving, and our hearts and prayers are with them.

More on Baby Charlie? Yes. Much more. And you need to know it.

I think Charlie Martin's linked report here is the best of many I've seen on this terrible situation - because Martin provides specific facts and steers away from emotionalism found in previous reports.

I've also been thinking about similarities between baby Charlie and the Nataline Sarkisyan case of a few years ago.

The unfortunate Nataline was on life support; heroic medical treatment had already been tried; and independent doctors who reviewed her situation unanimously recommended against an organ transplant as too risky. In short, there was no assurance that further treatment would make any difference. Martin’s article provides details that show baby Charlie's condition is somewhat similar to Nataline's: on life support; physicians advise that further treatment is futile; following further appeals, the NHS hospital denies further treatment and recommends baby Charlie be allowed to die with dignity.

So . . . is that the end of the story for, and about, baby Charlie Gard? No.  I don't think so.

Apart from the human tragedy here I think the central outrage in baby Charlie's short life remains that NHS and the power of the bureaucratic state brushed the family aside and is making all the decisions - in the process, keeping the child and his parents virtual prisoners of NHS.  Martin's linked article reports that

"His parents then asked to be able to take Charlie home, so he can at least die at home. That was refused too. I haven't seen any reasoning for that; it's hard not to think they're suspicious his parents wouldn't let Charlie just die as directed, but would, immediately upon regaining control of their son, flee the country."

Probably true. They have the money. And as for Great Ormond Hospital's suggestion to let the baby die with dignity - if keeping an infant prisoner in a hospital is the Hospital’s idea of dignity, it can bite my shiny metal #ss.

Note: nearly the same thing happened in my own town, to neighbors of our in-laws whose daughter was also diagnosed with mitochondrial disease. And then the hospital and bureaucrats in the State of Massachusetts took over and tortured the whole family for years.  

Do not overlook that in these cases, private insurance and government insurance behaved in the same ways. People who say nothing like this can happen here are seriously misinformed. It has already happened here. People who say nothing like this can happen with a nationalized insurance scheme are living in a dream world. These situations will surely arise again in the U.S. even if we end up with some kind of government single-payer medical welfare scheme.

Nataline, The Lawyer, and *The Other* Lawyer

Regular readers may recall a series of posts we did a decade or so ago about the tragic death of young Nataline Sarkisyan (folks interested in the backstory can find it here). Eventually, her distraught family hired a prominent legal beagle who sued the insurer (tangentially) involved.

Eventually, the story faded from public view, but co-blogger Mike just reminded me that we have a connection to the recent Avenatti/Nike case: (alleged) unindicted co-conspirator Mark Geragos.

It was Mr G whom Nataline's parents hired to sue Cigna for "emotional distress:"

"It's a win-win for the lawyers and activists: regardless of whether she prevails, this has rekindled the controversy and gotten Mr Geragos and the "Americans for Change" folks free publicity."

Interesting coincidence.

Nataline: A Physician's Perspective

[Welcome Industry Radar readers!]

Once again, Dr John Ford proves his indispensibility in bringing order out of chaos. This time, he brings his experience and insight to bear on the Nataline Sarkisyan story, offering some much needed calm and perspective.

He asks what is, IMHO, the most important question: "The facts of this case are unquestionably grim but can those advocating the public hangings at least imagine the possibility that some technologies may in fact be futile or at best experimental?"

Nataline Redux

In which I play the bad guy:

Regular readers may recall the sad case of  Nataline Sarkisyan, "a 17-year-old girl who died hours after her health insurer reversed its previous decision and said it would pay for a liver transplant planned."

There was a lot of finger-pointing, and plenty of blame to go around, but there were also some key issues that prompted much circumspection:

The insurance carrier (Cigna) had initially refused a liver transplant, the fact that experimental treatments are (at best) problematic, and whether PR should override best practices.

Regardless, Ms Sarkisyan ultimately passed from her condition.

Now, fast forward almost a dozen years, and we learn of a young mother who, having undergone "major surgery to remove thyroid cancer ... has never truly recovered." She was fortunate to find a "world-renowned expert in dysautonomia and autonomic neuropathies," and began treatment.

Unfortunately, these appear to have been largely ineffectual, and she's now at a very dark place indeed:

"The only treatment that is anticipated to help her is expensive, costing $6000-7,000 per infusion, and the doctor has prescribed 6 infusions to enable her body to reconstitute itself and get her on the road to recovery."

To that end, her family has set up a GoFundMe campaign [full disclosure: I have donated to it] hoping to raise enough money to cover most (if not all) of the expected costs.

Okay, a worthy cause, but why isn't her insurance company covering it (or at least most) of it)?

Well, that's because the carrier, Aetna, "has refused to pay for the treatments, calling the drug "experimental" and providing no recourse for her worsening condition."

Seems familiar, no?

[ed: for the purposes of this post, we'll table discussion of an insurer's putative responsibility to offer alternative treatment suggestions]

As noted in the GFM, there have been appeals and advocates, apparently to no avail.

As a parent and husband myself, I can certainly sympathize with the family's plight, but I have some questions.

So I've reached out to both Sarah's family and her insurance company, and would like to share what I've learned:

Her father, who was very nice and forthcoming, had no direct knowledge of the plan's details. He in turn put me in touch with his son-in-law (whose employer's coverage is the insurance at issue). Unfortunately, he has yet to respond (I'll update the post if/when he does).

In the meantime, I also reached out to Aetna:

"Good morning!

We're working on a post about [the GoFundMe], and would like to have Aetna's side, as well. We understand that you can't comment about this case specifically, but would be interested in speaking/emailing with a claims person who can address the dynamic between experimental vs medically necessary treatments.

Looking forward to hearing from you."

About which co-blogger Bob gently prodded me:

"Still tilting at windmills?

Carriers RARELY set their own standards for medical necessity, experimental, provisional. Much easier to follow CMS guidelines as in  "it's not my fault, this is how Medicare handles it."

Doubt you will get very far with this, even without factoring PHI complexities."

I knew that he was right, but "in for a penny...."

In the event, I did, in fact, hear back from them:

"Hi Henry:

My name is Ethan Slavin and I work in the Communications department at Aetna. While we can’t comment on this specific situation (as you noted), we can provide you with our general overview on how we make coverage decisions.

You are welcome to use information from this page for your post, as you see fit.

Please let me know if you have any questions."

Which was not unexpected, and actually helpful.

I would still like to know whether or not the plan in question is self-funded (because that could make a difference), but the reality is that Bob's correct, and while sad, this is pretty standard, and not subject to online petitions and the like.

Again, I'd ask why the venom is being directed at Aetna and not the folks with the high-priced meds, or the providers who would administer them.

But that's just me.

No good answers

Ms Shecantbeserious finds herself once again in the hot seat:

"House Republicans on Tuesday pressed the country’s top health official to cut through the government red tape in order to let a dying child have a chance at getting a lung transplant"

Here's the thing, though: there are no "right" answers here. As much as we like to bust Ms Kathy's chops, I find myself siding with her in this particular instance.

Are you kidding, Henry?

No, and please hear me out.

As we saw in the Nataline Sarkisyan case, sometimes the legacy media is quick to pounce on what appears to be a case of process over life. But is this really the case here?

From the media coverage, it's impossible to know for sure. But the rules have (apparently) been in place since 2005, so it's not exactly news that they exist. And here's the thing: while each life (and especially a child's) is precious, if an exemption is made in this case, how do you tell the next set of parents "no?"

Maybe you don't, but obviously the rule was implemented for a reason. Perhaps we should pause to consider Mr Chesterton's observations on fences.

Disturbing News: Update

[Welcome Industry Radar and Insurance Forums readers!]

Regular readers know that we're nobody's shill; we regularly skewer carriers, providers, even fellow agents. But we also know that the "regular" media often fail to report (or even try to determine) "the other side." We saw it last year, with the sad story of Nataline Sarkisyan and CIGNA. And we're seeing it again now, with the equally sorry tale of Caitlin Jackson.

As it turns out, there's quite a bit of misleading information in the original news account. How do I know this? Because I spent a great deal of time on the phone late yesterday afternoon, working my way through Aetna corporate communications in order to give our readers a more precise understanding of the issues.

As it happens, I connected with a very helpful young lady, who remembered our earlier posts on Aetna's transparency program, and our interview with Dr Campinha-Bacote. This helped to establish our bona fides (literally: Fido's bones), and we learned a bit more about this unfolding drama.

Full disclosure: due to HIPAA privacy regulations, there were quite a few questions I asked for which the spokeperson could provide no answers. This may change as the case develops, and we'll keep you posted.

In the original story, it was reported that the surgery was initally approved by Aetna "15 minutes too late." While this makes compelling reading, and certainly casts the carrier in an unfavorable light, it was simply untrue, and the reporter knew it.

Let me repeat that: The reporter knew for a fact that there was no such process, and yet reported it as true anyway. According to Aetna, "under the plan, Aetna does not require pre-authorization for surgery so we neither would have pre-authorized or denied the surgery as portrayed in the Tampa TV news story." [ed: from email] Not only that, but Aetna "explained to the Tampa reporter that the scenario she was portraying of us "approving" surgery is not accurate because we don't pre-auth [pre-authorize], but she ran it anyway."

I also learned that "(m)edical necessity is not relevant to this conversation;" that is, there was no issue regarding the appropriateness of the treatment. As an aside, I think that's a mistake: as we've discussed before, "medical necessity" is a key component of health insurance, and would be relevant in ascertaining whether the surgery was even called for. Nevertheless, it wasn't in this case, and one supposes that Aetna is entitled to its own procedures.

There are apparently "other inaccuracies in the story as well," but my contact declined to identity them. Hopefully, that will change.

One final point: if we're going to have a meaningful discussion about the merits and shortfalls of our current health care financing system (and I think we should), then it's in everyone's best interest to do so in an honest, fact-based manner.

Well, maybe not everyone's.

UPDATE (7/18/08): Just received this email from my contact at Aetna:

"While I cannot share details, I thought you would want to know we have resolved this matter together with the hospital. We advised the member yesterday."

Good news!

CowPatty Alert: This is just self-serving; there is zero indication (or likelihood) that Ms Brooks' "efforts" resulted in anything other than sensationalism:

"After an extensive investigation this week by Tampa Bay’s 10 News, Aetna is now changing its tune and partnering with Tampa General Hospital to cover one hundred percent of the costs."

I need to take a shower after that.