Clearing the Air: No. 3

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

Lest it appear that my last post was nothing short of a whole-cloth evisceration of all private health insurance companies everywhere, I do have more information to share that may balance the scales a little. Obviously, I did get another evaluation and did get approved for a transplant, or else I would not be sitting here looking out over UPMC at this moment. But more on all that later.

But first, let me say a word about customer service. In dealing with my company’s insurance carrier, UMR, I was almost solely in communication with one person — the transplant case manager. As we all know, the robotically trained peons who answer the phone at any insurance company’s 800 number are, by and large, utterly useless. Case managers, then, are supposed to be more skillfully trained in being able to answer complicated questions, and my particular case was about as complicated as it gets. Even so, the failures were many.

corporate_lobby

Here is what I tried to explain for weeks and months during the previously referenced appeals process: I didn’t know that my insurance company even had a limit on the number of medical evaluations a potential transplant recipient could receive until I had already reached the mark. There is nothing special about a transplant evaluation. All it is, is a weeklong series of tests and meetings with doctors and consultants to ascertain whether a patient can be accepted into the program. As such, I was under the impression that these appointments would, for insurance purposes, be treated like all other appointments. But no. Transplant evaluations are categorized differently because they can get quite costly, usually totaling $50,000 or more. Thus, from an insurance company’s perspective, if a patient is unhealthy enough to “fail” two evaluations, she is unlikely to be approved on the third try, so companies usually set the cap at two. So, while I wasn’t aware of the limit — technically, again from the insurance’s perspective, it was my fault for failing to find the pertinent language, plainly spelled out in black and white, on page 80-something of the voluminous policy — perhaps I could have been afforded a little slack in being solely concerned about getting access to health care rather than having an atomic-level knowledge of every nuanced detail in the document.

Although my insurance case manager knew that I was trying to get approved for a transplant, no one bothered to mention before I set up the second evaluation at Duke that the University of Pittsburgh Medical Center could become an in-network facility in a matter of weeks (see previous post) or that it was even being considered. Surely, this process doesn’t take place overnight. At the time, I was more confident than not that Duke would accept my case, so it’s not like I went there kicking and screaming, but had I known that UPMC was a possibility in the near future or if someone had told me about other in-network options like Cleveland Clinic or John Hopkins — both of which treat high-risk cases like myself — perhaps I would have waited. 1 As I have said, only after I used up the second evaluation did I learn that UPMC had become an in-network facility, which is what I tried to explain multiple times to my case manager who should have had my best interests at heart. I saw little evidence of it.

With the above information, I requested a narrow exemption given the particulars of my case, the severity of my condition and the requisite expediency. During the earlier, verbal part of my appeal, the case manager claimed she would take my case to her superior, but after that failed — who knows whether she actually did or not — I was told to write a letter and send it to some shady post office box address in Wisconsin. That was the second appeal. After that was rejected, I was told to send yet another one, and following the third fruitless endeavor, which included the aforementioned letter from myself and my doctor in New York, I was told I could then petition my secondary insurance for evaluation coverage. During all of their delays, belated return phone calls and long waiting periods between appeal responses, I lost at least five to six months, jerked along all the while, that could have been spent on a waiting list.

… It’s water off my back as long as I maintain the physical and mental ability to excoriate the idiocy and cold intractability of the system, plainly spelled out in black and white, as I am doing now.

The fire drives me on. I’m fairly young and have a strong constitution, and so, although all of this was certainly irritating and makes me think we should rip the insurance industry asunder and start anew, it’s water off my back as long as I maintain the physical and mental ability to excoriate the idiocy and cold intractability of the system, plainly spelled out in black and white, as I am doing now. But imagine the typical transplant patient: weak, infirm, emotionally drained. How much more difficult would it have been for them to go through this labyrinthine process only to get turned away with a few blithe keystrokes? How much more defeating to have gotten that far and have to start over?

Back to the story. Having thus exhausted all options to get coverage for a transplant evaluation with my company’s insurance carrier, I, along with a helpful case manager from my secondary carrier, who had more sympathy in her voice on the first phone call than I got with the other company in six months, began the process by which I am here today. Essentially, the medical director at the second insurance company discussed my case with the transplant director at UPMC and got the necessary approval for me to be seen, assuring the insurance director that the hospital in Pittsburgh had “different techniques” that could be deployed to mitigate my particular set of complications, of which, I will take up next time.

[Artwork credit: “Corporate Lobby” by DeviantArt user ianllanas.]

Clearing the Air: No. 2

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

In a perfect society — hell, in any society such as ours claiming to toe the moral high ground — patients who, through no fault of their own, require an organ transplant or any other life-saving procedure should be put on the fast track to receiving swift and affordable access to health care. But not here in the United States of America, where we claim to be the best nation in the world, yet fall wide of the mark on a great many fronts, health care not the least of them.

Credit: "On The Other Hand" by DeviantArt user gilad.

Much like our justice system, when it comes to health care, we don’t put a premium on systems that are efficient, cost-effective and actually serve the best interests of those who need to heal and rehabilitate their lives; health care is a grossly for-profit venture that, even after the implementation of Obamacare, doesn’t go far enough in closing the loophole between those who qualify for Medicaid and disability and low- to middle-class working families who are just one medical disaster away from bankruptcy.

The similarities between our failures in health care and our failures in the criminal justice system deserve to be explored further. Consider the timeless words of Chris Rock on why we have yet to find a cure for HIV/AIDS and other terminal illnesses:

They ain’t curing AIDS because there ain’t no money in the cure; the money’s in the medicine. That’s how you get paid — on the comeback. That’s how a drug dealer makes his money — on the comeback. … You think they’re going to cure AIDS? They’re still mad at all the money they lost on polio. … Curing AIDS, shit that’s like Cadillac making a car that lasts for 50 years. And you know they can do it. … They got metal on the space shuttle that can go around the moon and withstand temperatures of up to 25,000 degrees; you mean to tell me you don’t think they can make an El Dorado where the … bumper don’t fall off? They can, but they won’t, so what they will do with AIDS is the same thing they do with everything else. They will figure out a way for you to live with it. Cause they don’t cure shit. They just patch it up. Get you to the next stop so they can get more of your money.

This is a comedy skit, so obviously it contains some hyperbole, but it also speaks to an important truth. It is true that we have largely eradicated, by way of vaccines, the likes of polio, the measles and chicken pox, but one would have thought in the year 1999 when Rock performed this famous stand-up routine, and certainly in 2016, we would have made more headway on things like childhood leukemia, Alzheimer’s disease, Parkinson’s, Lou Gehrig’s disease, diabetes, sickle cell anemia and many others. I won’t go so far as to entertain any conspiracy theories about researchers actively blocking potential cures for any of these illnesses, but it seems incontrovertible, and not even that controversial, to say that pharmaceutical companies and medical supply companies have more to gain from treatments than cures and that we, as a nation, have propped up a health care system, like criminal justice, that is perfectly content with throwing money at symptoms — and turning profits hand over fist — rather than tackling underlying causes, both medically and those in society at large.

The amount of money Americans pour into the health care industry each year is disturbing when compared with Canada and European nations. The United States spent $2.9 trillion on health care in 2013, which amounts to more than $9,000 per person. Are we getting positive returns on our investment? Hardly. According to the Commonwealth Fund, America was the highest spender on health care among 12 modernized nations, yet ranked last in life expectancy, and while we did well in mortality rates for cancer, we were at the top of the pile in obesity, infant mortality and chronic illness.

David Blumenthal, CF president, was on point here:

Time and again, we see evidence that the amount of money we spend on health care in this country is not gaining us comparable health benefits. We have to look at the root causes of this disconnect and invest our health care dollars in ways that will allow us to live longer while enjoying better health and greater productivity.

That will mean more education, an increased focus on preventative medicine and, of course, more health care reform.

This excerpt from Vox on the same topic is, perhaps, even more sobering:

If the health-care system were to break off from the United States and become its own economy, it would be the fifth-largest in the world. “It would be bigger than the United Kingdom or France and only behind the United States, China, Japan and Germany,” says David Blumenthal, executive director of the non-profit Commonwealth Fund.

Or here’s another way to put it in its (insane) perspective: The US, which has a mostly private health-care system, manages to spend more on its public health-care system than countries where the health-care system is almost entirely public. America’s government spends more, as a percentage of the economy, on public health care than Canada, the United Kingdom, Japan or Australia. And then it spends even more than that on private health care.

The result has been a health care system that has little accountability. Buoyed by free enterprise and in the absence of firm regulations on costs, pharmaceutical companies can literally charge whatever they want for medicine in America. For instance, Nexium was, at one time, $215 for a single prescription in the U.S., compared with $60 in Switzerland and $42 in England. Likewise, doctors offices and hospitals by and large have to pass along exorbitant fees to patients because they know, and they are quite right, that they may or may not get fully reimbursed by private insurance companies or the government, so they up their charges in hopes of getting back a certain percentage of the total. Many hospitals, of course, have to take all comers, including indigent patients, so fees increase over time to offset losses. Add to this unnecessary treatments, services and misdiagnoses, bloated administrative costs, fraud and other inefficiencies, and the unwieldy and broken nature of our health care system becomes self-evident.

To briefly turn now to the American justice system, whereas we should, again, be going after the underlying causes of crime, dereliction and drug abuse and working to keep more people out of jail, silly, nonviolent simple possession laws, a lack of robust addiction therapy options and the proliferation of for-profit “corrections” companies has created another failed system.

Here is what The New Yorker called a “chilling” memo from an ironically-named privatized prison outfit called Corrections Corporation of America:

Our growth is generally dependent upon our ability to obtain new contracts to develop and manage new correctional and detention facilities. … The demand for our facilities and services could be adversely affected by the relaxation of enforcement efforts, leniency in conviction and sentencing practices or through the decriminalization of certain activities that are currently proscribed by our criminal laws. For instance, any changes with respect to drugs and controlled substances or illegal immigration could affect the number of persons arrested, convicted, and sentenced, thereby potentially reducing demand for correctional facilities to house them.

Using the prisons as a profiteering venture is, to state the obvious, antithetical to the idea of “corrections” in the first place. Prisons and jails are supposed to be about the business of helping troubled people rehabilitate their lives; not turning their misery into monetary gain. Although private corrections companies might be the most high-profile example of this cynical and deleterious business, local police department and sheriff’s office certainly don’t get off scot-free and also stand to benefit financially from locking up and processing as many petty, nonviolent offenders as possible to get court fees to help bolster local budgets.

Using the prisons as a profiteering venture is, to state the obvious, antithetical to the idea of “corrections” in the first place.

The common thread in all of this is that individuals, whether in health care or the criminal justice system, tend to get lost somewhere in the monolith, and our health insurance system suffers from acute intractability when it comes to assessing the needs, not of “customers” who are identified only by their policy numbers, but patients as people.

After learning in the summer of 2012 that I needed a lung transplant, my local doctor, who said I should have begun the process “yesterday,” as he put it, referred me to Vanderbilt, and after getting turned down there, I attempted to get a transplant evaluation at the University of Pittsburgh Medical Center on the advice of my long-time physician in New York. But since the hospital was not in-network with UMR, my insurance company at the time, I was forced to get checked out at Duke, which, as I have already said, turned me down. This resulted in using up the second of my two evaluations allowed under my insurance plan.

So, if it’s not clear what happened here, I could have been where I am now two or three years ago — in other words, where I should have been all along — were it not for health care’s in-network and out-of-network provider system. It works in many cases, but in some instances, like mine, patients are not always matched with the right providers in a timely fashion. Weeks after Duke turned me down for a transplant, I learned that UPMC had finally become an in-network provider for my insurance carrier, but of course, it was too late at that point, as I had already used up my two evaluations.

Convinced that I needed to be seen at UPMC, I began an appeal process with my insurance company asking for an exemption to their policy to try to get a third evaluation. Or else, I would have to quit my job and got on disability.

Insurance companies and their representatives are professionals, if nothing else, at using any number of stall tactics and delays in hopes of patients either forgetting about their appeals, losing interest or just dying out, whichever comes first.

As such, I filed the first appeal sometime in the late summer of 2015, and weeks then turned into months as the year dissolved into the waning winter. In my last request, I even attached a lengthy, impassioned plea from my doctor in New York asking that I receive access to health care based on my case’s importance to medical history (as outlined in previous links).

After five or six months of calls, voice mails and letters, the blithe, dismissive, one sentence reply letter I received from UMR was, to put it mildly, an insulting affront to myself as a long-time “customer” and to humanity. Something is seriously wrong in a system that is so intractable and beholden to policy that there is no room for case-by-case exemptions — in other words, exemptions based on the individual needs of actual people.

We are, to them, it seems reasonable to conclude, little more than numbers lost in the monolith.

Next up: The ready and easy way?[Note]http://oll.libertyfund.org/titles/milton-the-ready-and-easy-way-to-establish-a-free-commonwealth[/note]

[Credit: “On The Other Hand” by DeviantArt user gilad.]