Clearing the Air: No. 2

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

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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.]

Clearing the Air: No. 1

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

***

Now that I have taken a medical leave from my newspaper job in the Knoxville area and relocated to Pittsburgh, in hopes of getting a lung transplant at some point in the future, I thought this would be an interesting opportunity — or, if nothing else, a way to kill time — to record some of my unfiltered thoughts and observations as I go through this process in a way that might not have been possible in print. If you are reading about me here for the first time, you can get most of the background on what I am about to say from this newspaper column and from this post.

Credit: "Breathe" by DeviantArt user mesme8

Credit: “Breathe” by DeviantArt user mesme8

While the immediate aim of this blog series is to write down my ruminations in the days, weeks and months leading up to the transplant — and probably thereafter, if there is a thereafter — I will also roll back time a bit and reflect on what it has been like to deal with this illness through my teens, 20s and 30s — in other words, what should have been, and perhaps in an alternate universe, what would have been, the prime years of my life. But this is not, and I will not allow it to be, a sob story of loss and regret because believe you me, given the limitations, I have squeezed a hell of a lot of life out of 39 years.

To make a long story short for the benefit of those who already know the basic details, I was born with severe combined immunodeficiency and spent 3 1/2 years in a sterile hospital room in New York City, eventually undergoing an experimental mismatched bone marrow transplant in the early 1980s, which gave me a functional, if somewhat irregular, immune system. I developed COPD in subsequent years, and although doctors have some theories as to what might have damaged my lungs, no one seems to have any concrete answers.

When I was young, doctors simply thought I had asthma and would have to write me a “pass” so I would not be forced to run as much as other children during physical education classes. I was conclusively diagnosed with COPD in high school, and as such, I more or less knew that a lung transplant was coming at some point down the road, but I did not know the time or the place. Now, as I write this seven stories up at Family House University Place in the medical district near the University of Pittsburgh Medical Center, those two questions have been narrowed considerably.

I began breathing medicines shortly after the diagnosis, so even as I was getting ready to embark on new life trajectories after high school and again after college, my lung capacity was half or less than that of healthy human beings, so while the degeneration has been a glacial process over these two decades since graduating from high school, it has nonetheless been inevitable. Ironically enough, I began a career in sports writing in 2005, covering football, baseball, track and field and other activities that I could not have participated in myself. 1

After a short time in sports, I moved over to the news department and worked as a news editor for about nine years at publications in Northeast Georgia and East Tennessee and one year as a night editor in Upstate, South Carolina. Not until about five months into my most recent tenure at the newspaper in Tennessee, when a doctor said I needed to go on oxygen at night all the time, did I realize that the disease was starting to catch up with me.

In previous years while covering football and basketball games and other events, I would certainly have to take it slow at times walking up hills and climbing bleachers, etc., but other than the usual maintenance medications, I didn’t have any oxygen requirements until the summer of 2012 when I learned, through what is known as a sleep study, that my O2 saturation levels, unbeknownst to me, had been dropping into the low 80s at night. Any level below 88 percent can, over time, damage the heart and eventually lead to heart failure. Who knows how long before 2012 my nighttime O2 saturation level was dipping below this mark?

In any case, even though I wasn’t ordered to wear oxygen around the clock at this time, strapping on the tube before going to bed that hot summer night for the first time was, pardon the pun, deflating, and was the first step in the long and winding road that led me to the doors of UPMC.

Coming up in post No. 2: The insurance industry as an evil empire.